Please help SAVE MY LIFE!

August 31, 2013


It is Friday and the end of the week!  Some might say TGIF but for me I can’t really say that because one day is just the same as the next.  I can’t wait for the day that I get back my life and I am back to normal.  I am only hoping and praying that through the support, encouragement, prayers, and donations of all of you that a cure will be reached soon and I will be able to receive the very lifesaving treatment that I need to live the life that I was robbed.  I really want to make a difference in the world and make a everlasting mark.  I really want to be able to have a husband, kids, and become a doctor so that I can cure other people and they don’t have to suffer the same type of fate I have had to endure.

But in the meantime I have only been suffering and getting worse.  I am rapidly deteriorating, and I desperately need help. I am so thankful for all that have been supporting me, encouraging me, sending me their prayers, and giving me donations.  Without the help of all of you… I would definitely not have made it this far.  The road… especially lately has been filled with many obstacles and has been extremely difficult to travel.  But it has been because of all of you that have gotten me over humps in the road and kept me going.  Even when I think that there really is no light at the end of the tunnel, I think of all of you that are behind me, and it really makes a huge difference. I can’t tell you how much it means to me to know that I have your backing!!!

In the meantime, I really wanted to update you on all that has been happening.  I am really excited that my video has made over 1000 views.  I really never thought that would happen.  Even though I didn’t receive as many donations as I would have liked and needed for treatments, it was really nice to know that so many people have viewed my video.  Even if I can’t get ‘well’ … I at least want others to know what I am going through.  I want others to become aware of an illness that so little is known about.  I hope that this video brought some awareness to all that I am going through so that others that are suffering similar situations don’t have to suffer the same fate as me.  I really need help and unfortunately I am only one person in a huge world.  The more people that know about my illness and can spread the video, the more awareness that can be brought about and the more attention it can get.  I am hoping that perhaps the media can receive the video and post it so that it can definitely receive a lot of attention.  Not only am I hoping to raise donations so that I can receive the very lifesaving treatment that I need to live, but I want others to know how in an instant the very things that you take for granted can be taken away from you.  I want to show you that ‘health is wealth’ and that as long as you have your ‘health’ you have everything.  I also want to show others that even though things look really bad… you NEVER give up.  As Jesse Jackson once said, “If you fall behind, run faster. Never give up, never surrender, and rise up against the odds.”  Never let your head hang down. Never give up and sit down and grieve. Find another way.

I am so desperate to get well.  I really want to get well because there is so many things that I dream to do.  I was robbed of so much and been forced to give up everything because of my illness.  I lost my friends, the ability to walk, the ability to eat, the ability to go out, the ability to have fun, etc.  I was always a fun person who did everything and anything.  I loved to go outdoors and go to waterparks, figure skate, play the violin, hang out with friends, go to school, etc. and I can’t wait to do all that again.   I have such a huge bucket list to do when I get well and it keeps getting longer and longer.  There is no way that I am not going to accomplish all the stuff on that list before I go!

But the truth is that I am rapidly deteriorating and getting worse.  I have been in so much pain lately… much more than usual lately.  I honestly don’t know how much more I can take, but I keep pushing on even though the pain is unrelenting.  I keep asking my parents to “please do something” even though I know that they would if they could.  The truth of the matter is though I have been doing some cleaning up of my room because just in case something should happen… I don’t want my parents to be left with doing everything.  I am not giving up by any means, but I know that something is happening and I know that I am getting worse.  I know that unless something radical isn’t done or a miracle doesn’t happen soon, I know that I am really running out of time.  I feel like a time bomb just waiting to go off.  But like I said… I am still ticking away and defying medical odds.  After all, doctors never even thought that I would have made it this long.  They even are shocked that I am still alive because by medical standards and the numbers that I am… I really shouldn’t be alive.  But I tell them all the time that I am going to be here FOREVER!!

The past couple of days have been really disastrous.  I have been in such severe pain and been so hypersensitive that I haven’t even been able to tolerate the slightest amount of clothing on my body, especially from the waist down.  I had a blood patch transfusion performed on Wednesday and I don’t know if my body is reacting to it, but everything is just so much worse.

1239656_10100881635083210_1917197036_nIt is very possible on top of everything else that my body is reacting to the blood patch transfusion because it was very ‘traumatic’ to my body and my body really gets stirred up whenever anything ‘traumatic’ happens to my body.  For those that don’t know what a Blood Patch Transfusion is, a ‘blood patch’ is when you have blood taken from you and then given a transfusion except it isn’t in your arm. Instead, the transfusion goes directly into the epidural space of the spinal cord in order to close the hole that is occurring in the dura mater of the spinal cord. There’s cerebral spinal fluid leaking out and as a result, the brain drops instead of being suspended in all that fluid. It’s kinda like when a tire goes flat. Not only is it extremely painful to have this hole and the cerebral spinal fluid leaking, but also it is extremely painful to have this blood patch transfusion performed. You definitely don’t want it done. Even though they kinda knock you out when they do it… It’s mad painful especially upon awakening. Never do I want it again. I get shivers just thinking about it. Hope this info helps as to what a ‘blood patch’ is. Let me know if more questions.

Like I said though, it was so incredibly painful.  It hurt so badly.  They think it hurt me even worse because my nerve endings are so much more “on edge” and so much more “hypersensitive” than the normal person.  However, I have had some really bad complications and reactions towards this transfusion, as I have a headache still, I keep having hot flashes, and I am extremely weak.  My autonomic dysfunction is acting up so much lately especially since the transfusion and I keep getting ‘hot flashes’.  However, due to my disease and autonomic dysfunction, I cannot sweat because I lost that ability and therefore it only makes things worse.  In addition, I also ended up getting a fever of 101 from the transfusion.

The doctor was really worried about all that was happening with me.  We spent the last two days back and forth on the phone with the doctor.  You know the doctor is really nervous when he gives you his private cell number and texts you constantly during the day and night… even up to midnight to see what is going on.  He really is an amazing and caring doctor and I am so thankful for all that he has done. He was really concerned about what was happening and fearful that I could be getting Meningitis because I was definitely at risk with all that I have been through and was scared that I was getting it with all the symptoms that I was having.

I had to go back to the doctor today because they were going to redo the blood patch transfusion because they didn’t think it ‘took’ the way it should.  I was really going crazy because I knew how painful the first one was. I was so scared to get it done again and really didn’t want it done.  However, when we went to the doctor, the doctor decided to place me into a ketamine coma and give me a very high infusion of ketamine to see if he could ‘quiet’ down my body.  He was also hoping that perhaps he could ‘reboot’ my body with the ketamine like a computer gets rebooted.  Ketamine is a special drug because it has the ability to ‘reboot’ the body and start it up from scratch again.  It really is amazing.  That is one of the reason why I need to go out-of-the country to have that really intensive ketamine coma.  Since my disease is so bad, I really need a high dose of ketamine that is not FDA approved in the United States to reboot my entire body.  They are thinking and hoping that by giving me this really high dose, it will start my entire body from scratch and I will be ‘cured’ and put into remission. It is of course very risky, as they literally put you completely on life-support.  They literally have to shut down your entire body and put you completely on machines, which includes heart and lung.  You are fully intubated this whole entire time because your body is basically ‘shut down.’  But hopefully after the extremely high dose of ketamine, the body is cured of the disease when it is rebooted and taken off the machines.  I really hope that I can have this coma, but it is just so incredibly expensive.  It would cost over $100,000 and it is definitely not covered by insurance.

The doctor put me into the ketamine coma in a way of hoping it would help all that was occurring in me because I was not only suffering from the cerebral spinal fluid leaking, but I was in enormous pain from the leakage as well as overall pain from the way my body was reacting toe everything that was occurring.  He said that we would try the ketamine coma and then do the “blood patch” afterwards, if needed. The doctor was also hesitant to do the blood patch because of the fever I was having.  He really didn’t want to go back into my spine when I was having a fever because he didn’t want to do more damage.  So like I said… he was hoping that it might be able to be avoided by having the ketamine coma. However, I was in so much more pain than normal that they even had to give me extra ketamine in order to put me out.  That showed that my body was all wound up.

Unfortunately even though the ketamine coma did help while I was “under”, it didn’t last.  All the symptoms are back and I am in so much pain.  My body is really killing me and I am literally climbing the walls.  The doctor thinks that besides the cerebral spinal fluid leaking, he thinks that I am also having a reaction to the actual surgery that I had last week, which was when I went for the trial for the pump.  He thinks that I am having a severe irritation to the duramorph injection that I was given on top of everything else.

Since I am really suffering, the doctor is going to call in another drug to help with the pain.  I really am climbing the walls and have maxed out on all my drugs.  After speaking to the doctor tonight, he is going to give me Vicodin on top of all the other drugs that I am already taking.  How many drugs is he going to put me on?  After all, I already take Methadone, Morphine, Dilaudid, Nucynta, Ketamine, etc. everyday. I feel like a little ‘druggie!’  You know how easily I would fail a drug test if I was tested?

In the meantime, I also had my bloods taken today and they aren’t good either.  My bloods are really bad, which is not anything new.  Actually I was hoping that they would have been better than they were because of all the IVs I have been given and the vitamins that were in the IVs too.  But I guess even with all that I was given, it still wasn’t enough.  My heart bloods are still way down and I can easily suffer from an arrhythmia and cardiac arrest.

I also found out that my the “mean corpuscular hemoglobin concentration” is very low. The “Mean Corpuscular Hemoglobin Concentration” is a measure of the concentration of hemoglobin in a given volume of packed red blood cells.  A low count in this occurs in iron deficiency anemia because hypochromic red cells are produced as a result of the lack of iron to support hemoglobin synthesis.  So this could be the reason why I am weaker than usual.

I have also found out that my APPT is extremely elevated.  This means that I am having an extremely difficult time clotting.  Therefore, this could be the reason why I am leaking cerebral spinal fluid because I can’t form a clot in the dura mater to close the hole.  This could also be the reason why the first transfusion didn’t take because like I said, I am having a hard time ‘clotting.’  So… this is just another problem to add to all my others.

So… things have not really been good.  The doctors really want me to go for another Hyperbaric Oxygen Chamber Treatment but unfortunately we cannot afford it.  Even though we did start to see some improvements with the treatments, it is too expensive and therefore we cannot afford to continue it.  It is really a shame because it really did help.  Not only did it make my body turn normal coloration (so it meant that oxygen was getting to all my parts and it could try to avoid amputation because it was getting to all the dying tissues), but also it was helping my GI tract because I was getting hungry and everything from it.  It was also helping the bloating to a point as well. It was also giving me more energy.  It was helping my immune system.  To think… it was only the beginning and of course it could have been so much more helpful because they said that I would need at least 40 treatments.  However, like I said before… it is a shame that I can’t continue them because of how expensive they are.  It stinks that insurance just doesn’t cover it.

Well… I guess that appears to be it.  I will keep you posted on what is going to happen.  I am supposed to be seeing the neurosurgeon on Wednesday to further discuss the brain surgery that he wants to do.  They are proposing putting a machine in my brain, but I will tell you more when I know the exact details on Wednesday.

1280453_10100881633486410_631247499_nLike I said before, things are really bad and the doctors are thinking about doing another blood patch transfusion.  They are hoping that I would be able to hold off until Tuesday because of the holiday and everything.  But I will keep you posted.

Oh yeah… I forgot to tell you that I got the call from Georgetown Hospital to go for the testing for the multivisceral transplant surgery.  I need a new stomach, small and large intestine, pancreas and liver.  So we are headed down there September 16th for some testing.  It is only going to be a brief visit, but they want to do some more testing.

In the meantime, I have been trying to keep myself busy with some reading.  I have been reading James Patterson’s new book called “Second Honeymoon!” I am trying to keep as many brain cells alive as possible!!  I have also been watching a great series on Netflix called “Orange is the New Black.”  It really is a great series.  After all, there isn’t really anything on TV lately because it is the end of the summer.  Just got to hang in there a few more weeks because by the end of September all the Fall shows should be premiering again. You know things are bad when even the TALK shows are repeats.

Well… thanks again for all your support, prayers, and encouragement.  I am still in desperate need of plenty of donations because I need to receive treatment to save my life.  If you have any suggestions on how to receive some donations, I would really appreciate it.  Please continue to spread my video at http://youtu.be/tRyEp1V6IGs because the more people that knows about it the more chances I have of receiving donations!!  Remember… “When life gets you down, you know what you got to do? Just keep swimming!”



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August 28, 2013


Just wanted to update you on all that is happening since so much has been happening.  I am honestly really upset and have been doing a lot of crying because everything comes down to the green dollar.  My life seems to depend on that stupid paper, and it appears that money is more important than saving a person’s life.  I have had a particular hard day today because we have been hitting one roadblock after another after another today.  It has been horrible.

First off though, I want to thank everyone for his or her prayers and encouragement.  It has been a long and difficult journey, and I definitely would not have made it this far if it wasn’t for you.  You really have made a huge difference.  I am like the “Energizer Battery” and I keep going and going, but it is you that keep recharging my batteries.  Even though I am continuing to suffer and the pain is horrible, I am continuing to push forward… hoping for a day where I will be able to regain my life.  I am only able to do this because I have the support of you.

I can’t tell you how thankful I am for everyone’s support.  The people that have spread awareness of my website and video are amazing.  I can’t tell you how much I appreciate it.  I desperately need help and it appears that the only way that this is going to happen is if attention is brought to my condition… and what better way is there than word of mouth.  I am so thankful for a dear friend that made this amazing video on YouTube and who has really come to the plate to bat for me. She really is amazing.  I really can’t tell her how thankful I am and how much she really has made a huge difference in my life.  Even if I can’t necessarily make a difference in my own life, perhaps I can at least gain awareness for this illness since there isn’t much known about it and people in the future won’t have to suffer as much.  I can only hope that no one will suffer the same torture that I have been suffering.  It is Hell!

1186070_10100878906042230_69363887_nAnyway… like I said before… I desperately need help.  I am rapidly deteriorating and it appears that I am only hitting one roadblock after another.  These few days have really been hectic and I really feel like I am being constantly knocked down.  It is getting harder and harder to get back up, but knowing I have you behind me is really the reason why I am still trying to get back up. Let me tell you all that has been happening.  I don’t know how coherent this all will be or how mumbo jumbo it might because I am on a lot of meds, in a lot of pain, and have a lot to say.  However, I don’t really have a lot of time to write because I am not feeling well… so I am going to try to keep this as brief and concise as possible.

First of all, I think I should let you know that I am going for surgery tomorrow morning.  Well actually it will be later today considering it is after midnight.  Due to the complications that have occurred because of the last surgery when I had the “trial,” I now have to have a surgery tomorrow that will entail getting a blood patch surgery and a transfusion.  I have been suffering from the worst headaches and I have cerebral spinal fluid leaking out of my spine from the past surgery.  The doctors were hoping that it might heal on its own, but unfortunately it has not.  In fact, it has only gotten worse.  The doctors have put me on potent medications like Fiorcet and had me on bed rest so that I lay flat, but despite it all… nothing has worked.  I am continuing to leak cerebral spinal fluid and suffer from a massive headache every time I raise my head.  Therefore, I need to have that blood patch surgery and transfusion in the morning. It also forced the second part of the surgery, which is was the major surgery that entailed implanting the permanent pumps, to be canceled because they can’t do surgery to do this when I am leaking cerebral spinal fluid like I am.

527086_10100878906251810_1212196972_nSo I am headed to have the blood patch transfusion surgery tomorrow morning. I really hope that it works because I really have been suffering. Despite all the meds, bed rest, hyperbaric oxygen treatments, etc. nothing has really stopped the cerebral spinal fluid from stopping.  So I will have this surgery because it is needed to close the hole that is occurring in the spinal cord as a result of the previous surgery that I had for the trial for the pumps.  The doctor will take my blood and actually inject it into my epidural space of my spine.  Hopefully, it will form a ‘patch’ and it will stop the cerebral spinal fluid from leaking.  The resulting clot then ‘patches’ the meningeal leak.  I really hope that this works because I can’t take the pain anymore.  I can’t sit up or anything because of the huge headache.  I can’t even go to the bathroom because it is also causing my spine to go into spasms and every time I go to the bathroom, I am suffering from intense spasms and pain in my lower spine.

Since I will be undergoing this blood patch transfusion surgery, I will also have a ketamine coma tomorrow as well.  They are going to have to put me out in order to do it, so they are going to give me ketamine as well too.  Ketamine is definitely needed during the procedure because it is the only drug that prevents the disease from spreading. The disease is already spreading like a wildflower and since it spreads through trauma and surgery, we can’t afford for it to spread again during this surgery.  So we are hoping that the ketamine will keep it at “bay”, if you know what I mean. At least since I am getting put into the ketamine coma, I will have one day of relief because that is the only time I get a vacation from my pain.

I also want to let you know that unfortunately we had to stop the hyperbaric oxygen treatments.  Even though the doctors really want me to go for them because it has been shown to have benefits, it is extremely costly and unfortunately, we cannot afford them.  I have gone for a couple of treatments and have seen firsthand that the hyperbaric oxygen does have the ability to help in certain aspects. It might not cure anything, but it certainly does help.  The doctors definitely want me to go for it because it has been shown to help me heal better after surgery, prepare me better for surgery, and has shown other benefits as well.  The doctors are also worried about me losing my limbs and such because I am turning colors as a result of no oxygen getting to my limbs and organs (and therefore amputation is a possibility down the line), and they were hoping that the hyperbaric oxygen could restore some of the oxygen and revive the tissue that was considered ‘dead’!  They were also hoping to have it help with my GI issues because I have severe gastroparesis and a lot of nerves throughout my entire body are paralyzed and ‘dead’.  It has been shown that hyperbaric oxygen can actually have the potential to rejuvenate nerves and possibly help me.

1175704_10100878906436440_190149975_nI must say that I definitely have seen a difference when I am under a ‘dive’ in hyperbaric oxygen.  When I am in the dive and in 100% oxygen, the coloration of my limbs comes somewhat to normal coloration. That is really good because it means that oxygen is going into the tissue that normally would not get oxygen otherwise.  It really is saving my tissues and organs.  I have also noticed that my stomach has also felt a little bit better and I am not distended as much.  One of the effects of the hyperbaric oxygen is being hungry because it stimulates metabolism and such.  I can honestly say that even though I only had a few treatments, I have really had positive effects because I could feel a difference in that area as well. All in all… I really think that the hyperbaric oxygen could have a positive effect on my health and be really beneficial on me.  However, I just found out that it is going to have to stop, which is something that really tears at me heart.

I am really upset because I learned today that I am going to have to stop the hyperbaric oxygen treatments.  Even though I have only had a few treatments, I have noticed a few subtle differences already.  However, they say that in order to really notice differences, I will need at least 40 treatments.  In fact, some people even go into the chambers every day… even twice a day.  However, I cannot afford these treatments anymore and even though I was given these treatments as a “gift,” I will have to stop them.  They gave me 5 treatments to see if it made a difference and what would happen, but now that I am seeing differences, it really stinks that I am going to have to stop it because I don’t have the money to keep on going. It would literally cost me about $1000 a week, which is something that I don’t have.  I feel like everything else that it was just a ‘tease.’  I hate when there is something that I see that can potentially help me and then it is pulled out from under my feet. I should have never gone for it to begin with.  It really hurts more than ever to know that there is something out there that can help you, but you can’t get it because you can’t afford it.  Not many things actually help my illness and the stuff that does is so not affordable because they are so incredibly expensive and insurance of course doesn’t cover it.  So of course that leaves me without it and continuing to suffer and deteriorate.  This is my life on the line and I am really running out of time!

1238828_10100878906850610_1993751243_nIn addition, we have been having problems for the implant for the permanent pumps. Even though I went for the trial this past week and had endured all those complications, we are having a hard time putting the permanent pumps into me because we need someone to ‘fill’ the pumps.  I really need these pumps because they think that it will benefit me in various ways.  They think that it will allow me to better absorb the medicine since I can’t absorb medication or food because of the extreme gastroparesis and such (the pump will allow the medication to be deposited directly into the intrathecal space in the spinal cord which is much more effective and don’t have to first wait for it to be first absorbed through the digestive system and into the bloodstream), the pump will allow the meds to be more potent because they are being deposited directly into the intrathecal space of the spinal cord, and they are hoping that I will be able to get additional drugs that are not available in pill form that could possibly benefit me.  Since I am having an extremely hard time swallowing because of my illness and take over 50 pills daily, they are hoping that this pump would make a huge difference too because it would cut down on the amount of medication that I would have to swallow.  I literally eat pills for breakfast, lunch, dinner, etc. and unfortunately they don’t absorb the way they should.  I can literally take the pills and when I vomit over 12 hours later, I can throw them back up and they are not dissolved.  So what good are they doing me?  So hopefully the pumps would have helped all of that.

However, the pumps are not the easiest of answers.  It took awhile to find a surgeon that would be able to implant the pumps into me because I am so thin.  The pumps are really big and I am so small because I am only weighing in the 60s.  The doctors are so worried that I am not only going to suffer a complication from the actual surgery, but they are worried about the complication of the skin being eroded because there is no padding or anything.  Therefore, when we finally found a surgeon to do the pump, there was going to be a plastic surgeon in the room as well so that he could possibly help build a pocket in my abdomen and better position the pump so that the pumps can be better placed in me.  You know?

I thought that everything was taken care of now that we had the surgeon and plastic surgeon to put the implant in.  However, they are really worried about the doctor who will fill the pump afterwards.  Not many doctors are willing to fill the pumps afterwards and those that do fill pumps will only fill the pumps that they put in.  I do currently have a doctor that will fill the pump, but I am really worrying what will happen when this doctor retires or something because I will have no one to fill it then. There was an oversight today and we had to find someone besides my regular doctor to fill the pump and when I made additional phone calls to fill the pump, I found that it was extremely difficult to find someone to fill it.  I called private doctors as well as hospitals and the truth is that most doctors won’t fill it or if they will… they will only fill the pumps that they put in themselves and therefore, they won’t be willing to fill mine because I would be having my pump put into me by my current neurosurgeon.  So after talking to all these doctors and everything, I was really wondering if it really was a good idea to get these pumps after all because even if it might help by making me more comfortable and allowing me to have additional pain meds and such, it might cause more trouble than anything because of the complications that it will cause since I have no ‘padding’ as well as the complications of getting it filled because after my regular doctor retires, I will have no one really to fill it.  You know?

1011637_10100878906955400_1224864225_nTherefore, we are thinking about just proceeding straight into the brain surgery. Originally we were going to go through with the pumps and then proceed with the brain surgery afterwards.  However, after careful thinking about the pumps and how they might be more of a problem than anything else, we are thinking of just going directly into the brain surgery.  I am not going to go into all the details until we have it all planned, but to put it shortly… they are literally going to put a machine and electrodes in my brain to help try to buy me time.  Of course it is very risky and dangerous.  We will know more from the surgeon tomorrow, so I will of course let you know then what the plan is.

I am really upset because I really feel like everything that could possibly help me is so unobtainable because we don’t have the money.  It is like being teased with something and there is nothing worse than knowing that there is something out there that can help you and you can’t have it and as a result, you are going to suffer and die.  You can’t imagine that feeling.  I just wish that there were something that can be done.  I hate being a burden to my family because they have given up so much because of me.  My family has literally gone into the poorhouse because of me and to be honest with you, they have literally given up their lives because of me.  We have stacks and stacks of bills and even the mortgage is getting harder and harder to pay.  I am really scared that we are going to lose our house and if we ever do… I would never forgive myself because all the money is going towards me.

My parents would do anything to get me well, but it is so unfair that they had to give up their lives for me.  They should be at the point in their lives that they should be resting and having the time of their lives.  However, they are working harder than ever and not even enjoying themselves.  They just turned 60 and they are no youngsters.  I am so worried that something is going to happen to them because they work basically every day.  My dad works basically 7 days a week and is up at 3 AM, out of the house by 4 AM and not home until 7 PM.  It isn’t like he has a desk job either, but his job is all physical work and driving.  I look at pictures that have been taken just in the past 6 months and I can see how much they have aged.  It really scares me because I really don’t want anything to happen to them.  They aren’t so young and they can’t be working so hard.  If anything ever happened to them, I would never forgive myself.

Yet… they work so hard and give up so much so that they could try to provide as much as they can for me, which in comparison to the amount of treatment that I need is like basically nothing.  They don’t go out to eat, they don’t buy themselves anything anymore, we haven’t been on a family vacation in like over 8 years, and we don’t even do anything for fun anymore.  It is really horrible!  I need far more than they can ever give me because my treatment is so expensive and that is why I need the help of others.  Without the help of others, I will no way be able to receive the lifesaving treatment I desperately need.  I hate to sound like a beggar and a crier because I was never like that.  However, I am only 31 years old and I don’t want to die.  I have so much to live for and I really want my life back.

So… this is where we stand now!  I am now waiting to hear what the next step is.  Dad is freaking out because dad is extremely nervous about the next step because the next step has never been so dangerous.  We have exhausted all the treatments that have not been as dangerous as the ones we are now attempting and dad always hoped it would never get to this point. Dad is so scared that I am not going to make it through the brain surgery or that very intensive ketamine coma that I really need that is given outside the country or that multivisceral organ transplant.  Yet, it has come down to the point that I really need them because they are my only chances. My dad would do anything to get me well, but he is really skeptical about having me go for these procedures because of how risky they are.  He is soooo afraid that something is going to happen to me in the process.  I can’t blame him.  But I told him that it comes to a point that we have to take a huge risk like this because it scares me more to continue to live like this.

So tomorrow will be a big day.  Like I said before, I have the blood patch transfusion and ketamine, and I will hopefully know more about where I am heading… whether it is for the pump surgery or the brain surgery.  Of course I will keep you posted.  I really hope that it can be done as soon as possible because I am really suffering.  But with all the holidays coming up such as Labor Day and the Jewish Holidays… I hope that it will all work out.

I am also waiting to hear from GEORGETOWN because I will be heading there shortly for some more testing for the multivisceral organ transplant, as I need a new stomach, small and large intestine, liver and pancreas.  It is really dangerous and we are really nervous about it because the survival rate isn’t too good.  However, this honestly is the only real chance of overcoming my GI problems.  It is basically getting a new system!  I am getting everything under the hood replaced except the “engine”!! LOL.  Everything is in the final stages to be matched for a transplant.

tumblr_lw97emxnjI1r7g9k0o1_400Like I said before, there is a new video up on YouTube about me.  It is at http://youtu.be/tRyEp1V6IGs Please continue to share it because it already has over 700 views. I am hoping to get at least 1000 views.  That would really be awesome if that would occur.  I really need as much help as I can get.  I need as much support, donations, and prayers and I can receive.  Even if I can’t be helped… at least let me bring awareness to all that is happening so that people in the future don’t have to suffer the same fate that I am.  I really want to make an everlasting mark in the world and if this is the way that I have to do it… to let others know about this illness and let others realize that something as horrendous as this disease can exist, then so be it.  I also want people to learn from reading my story that when you have your ‘health’… you have everything and also that you should appreciate everything that you have because in a heartbeat it could be taken away.  Never did I think that my life was going to end up like this.  I also want to show people that even when life is hard and the oceans look impossible to travel, you just gotta keep swimming!!

Well… thanks again for all your support!


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August 24, 2013


I know this is probably going to be a bit incoherent and a bit probably discombobulated, but I just wanted to write an update on all that has been happening because so much has been happening and I wanted to keep you all in the loop.  I am not doing too well and just came home from the hospital. In fact, I am on so much medication and things are so bad that we might be headed back at any moment, so please bare with me if things are a little fuzzy or repetitive because I am under a lot of meds, stress, pain, etc. but I wanted to make sure that I kept you abreast on everything that has been happening.

Like I said… I just came home from the hospital and it looks like I am probably might be headed back there.  I had the first surgery out of two surgeries two days ago, which was the trial for the pumps to be put into me.  They want to put the pumps into me for various reasons. I am really deteriorating and they think it is time that they put the pumps in me because first of all, I can’t really swallow anymore.  I take like over 50 pills daily and unfortunately, I can’t really swallow.  The disease has really interfered with the ability to swallow and it is getting to be extremely difficult to get anything into me especially me medication, which I take over 50 pills.  I also do not absorb anything because of my extreme paralysis of my GI system. I can literally take medication and then when I vomit over 12 hours later, I can actually bring the pills down to my dad in a cup because they are full and not dissolved.  So they really aren’t doing me any justice really either. Therefore, the pump will eliminate that problem because instead of first having to dissolve and being absorbed in my GI system and going through my bloodstream and such, the medication will be delivered right into my intrathecal space in my spinal cord, which will go directly to my brain.  That being said, it will be so much stronger as well.  So that is another reason why the doctors want to do the pumps as well.  Since I am suffering in pain and deteriorating so rapidly, the medication that I am on now is not cutting it anymore. Therefore, I need to have more powerful medication and by having the pump deliver it directly to the intrathecal space and having it go directly to my brain, it will be so much potent.  The pump will also allow me to get medication that I cannot necessarily take by mouth because it doesn’t come orally.  There is this one medication for example of “snail venom” that is considered still experimental but it has been shown to be effective, but can only be given through the pump.  So hopefully with all the added bonuses that the pump can give me, it will be a blessing in disguise even though it will be a major operation that will extremely risky and it will certainly be amazing to see how they are going to get it implanted in me considering how tiny I am.  In fact, that is one of the reasons that a plastic surgeon will be scrubbing in and performing the operation right beside the neurosurgeon.

Anyway, in order to have that permanent implant of the pump placed in me, which the actual implantation will be supposed to take place on Tuesday, August 27th, I had to go for a trial to make sure that I can withstand the pump’s morphine at the very least because it isn’t the same as when I take it orally as well as other things.  When you get morphine put into the intrathecal space, it becomes so much more potent that it can really actually kill you and you can have such severe side effects.  So… I had to have a trial in the hospital to make sure I could tolerate not only the medication but some of the lines as well.  I was then placed in the ICU to recover.

In terms of the actual operation, it went ok.  It was pretty much standing room only in the operating room, which I am kinda used to because they had to have specialists in the room for everything and to monitor every aspect of me because I am so very complicated.  For example, I even had to have 2 anesthesiologists because they had to work together to make sure that I came through the surgery.  It was a longer and more complicated surgery than the typical patient and thankfully I made it through the actual surgery.  However, I ended up having lots of complications afterwards.

1185949_10100873420076150_1575937904_nAll throughout the night they tried to keep me as sedated as possible, but my blood pressure constantly fell and gave them problems.  The highest my blood pressure would read would be in the 80/50 and then it would fall into the 50/30 and have a pulse that ranged from 50 down all the way to the 30s.  It really was all touch and go.  They kept trying to give me fluids to try to build up the pressure and such but it was extremely difficult because the IV lines were burning up my veins and flaring up my neurological disease and autonomic dysfunction.  The IV and the fluid running through it were really escalating my pain and all my diseases because I am so hypersensitive and the littlest thing is such a major thing to me.  I can literally feel anything and everything, which includes the liquid running through my veins.  So since they really had a hard time running the IVs because of the escalation of my illness, they were really having a hard time managing me.  The nurses in the ICU all said that I needed to be in a hospital out-of-state that was better situated for this.  That is only more reason why I need to travel to top hospitals like HOPKINS in Maryland or STANFORD in California.  But the truth is that sometimes I just need to go to a hospital in the area, but unfortunately they aren’t totally equipped to handle me.

I was taken the next day to hyperbaric oxygen in hopes that it would help me heal.  What an experience.  I never had something like that done before.  They placed me in a tube and I went in a ‘dive’ to hopefully try to help me.  I didn’t go to the necessary depth that they are going to end up putting me at because I have to build up to it and it was my first dive, but I went to a nice depth.  It took about 10 minutes to get to the depth that was needed and then I spent quite some time at that level.  The people were really amazing there and they went really slow to make sure that I understood everything thoroughly and I wasn’t scared.  My dad even stayed right by my side throughout the entire process.

946355_10100873420455390_882776764_nThe hyperbaric chamber was definitely an experience.  I could have watched TV while I was under, but I was so uncomfortable from the surgery and all the complications that I honestly really didn’t care to do anything. Maybe in a future appointment though I will want to do watch, but this time I was just too weak to do any of it.  The people there took such great care of me because they made it so that I was so comfortable.  Even though it was a bit painful when I first went into the dive because I got an extreme ‘rush’ of sensitivity and heat throughout my entire body and such, we definitely saw a difference when I came out of the chamber.

When you are in the chamber, you are pressurized and give 100% oxygen.  We really aren’t sure what is going to be happening in the chamber with me because it is considered ‘experimental,’ but we are hoping that it will help because it has proven to be effective in helping so many other conditions.  Hyperbaric oxygen therapy involves breathing pure oxygen in a pressurized room.  In a hyperbaric oxygen therapy room, the air pressure is raised up to three times higher than normal air pressure. Under these conditions, your lungs can gather up to three times more oxygen than would be possible breathing pure oxygen at normal air pressure. Your blood carries this oxygen throughout your body, stimulating the release of substances called growth factors and stem cells, which promote healing.  We really did see a difference already because I have severe discoloration in my limbs, especially my left leg.  In fact, the doctors are really scared that I am going to end up losing my limbs (especially the left leg) because it is so deprived of oxygen and turns black. When I was in the hyperbaric chamber, the leg actually resumed somewhat normal coloration because I was getting oxygen to the leg since I was undergoing 100% oxygen consumption.  It was really amazing to see.  If only that would last, but of course when I came out it went back to being black and such.  But perhaps after more treatments, the leg might be able to be ‘saved’ because the oxygen can possibly heal and rejuvenate the dying tissue.  Perhaps this can save my legs after all.

Anyway… I underwent this hyperbaric oxygen treatment to try to help my disease, as well as to try to combat the complications that I had during surgery.  However, I am still continuing to suffer from the complications of the surgery and we spoke to the doctor tonight and he said that I can easily end up back in the hospital because of a stroke.  I am suffering from intense headaches, I am unable to really see straight, my spine keeps having spasms, I cannot go to the bathroom, and I keep getting pain in my lower spine when I do try to go to the bathroom.  It is horrible.  I am getting all that on top of all the other pains and spasms that I am already experiencing.  The doctors thought that maybe if I drank some caffeine that it might have helped with this problem.

1236961_10100873419951400_307099440_nDue to my diseases and how thin I am, they think that even though they used the tiniest of instruments, they think that they possibly punctured the Dura mater, which is one of the meninges surrounding the spinal cord.  As a result, cerebrospinal fluid has leaked out into my epidural space.  It is extremely painful especially when I sit upright or anything.  I cannot tolerate any noise and my head is ready to explode.  I am extremely nauseous too. My body keeps going into spasms and the doctor said that it is all related.  He said this problem is causing spasms in my spine, as well as pain.  Therefore, every time I go to the bathroom, I get intense pressure, spasms, and pain in my lower spine.

The doctors are extremely worried that something severe is going to happen to me because I am so complicated and I am not a ‘typical’ patient.  They are very nervous because I am not in the best condition to withstand anything as it is and to have this complication is not good at all either… especially with the neurological disease an autonomic dysfunction.  Any trauma to my body or stress such as this can cause my body to go completely haywire and really cause it to fail.  They are really worried that a serious complication such as a stroke is going to happen because of all that is happening and especially since I have this autonomic dysfunction, which means that there really is no control of my system as it is.

To try to help with this problem, the doctors have me on bedrest and want me laying as flat as possible.  However, the problem with this is that I suffer aspirations and therefore, laying flat is definitely not food for that.  Whenever I lay flat, I end up choking.

In addition, the most important thing that needs to be done to help me is to make sure that I stay hydrated and to drink a lot.  However, that is really impossible with me because I have the severe gastroparesis and I don’t absorb anything.  Every time I drink, I end up not absorbing and end up vomiting it up.  I am so very thirsty, which they think is a result of the complication of this surgery and also of my disease in general, but since I cannot tolerate fluids, it really makes it even harder to combat this complication because I really do need fluids to get better.  So the doctors said that if I can’t keep fluids down, I might really need to get to the hospital.  Also, the more that I drink, the worse the aspirations are.

Everything the doctors have told me to do to try to help me are not working.  Like I said before, I can’t tolerate the fluids that I have to drink.  They also want me to drink stuff with caffeine and when I do, it only makes things worse.  I am just suffering so much and the doctors are scared of what is happening.  The doctors are having me lay flat and I can’t be left alone.  They are hoping that between everything, it will improve.

If things continue to worsen or remain the same, the doctor wants me brought immediately to the hospital.  They are really worried that I am going to worsen or even have a stroke or something, which is a real possibility.  They are talking about having me go for another BIG procedure on Monday entailing going for a blood patch.  During this time I will get a blood transfusion.  I will then get blood taken out of me and put into my spine to hopefully form a patch where all the cerebral spinal fluid is leaking out of me.  Hopefully that will help.

With everything going on, they don’t know if the second surgery is going to be a ‘go’ on Tuesday.  There are too many things going on now especially with these complications from this past surgery.  We really can’t afford to have more complications in addition to all of these.  You know?  We really don’t even know if my body is going to be able to tolerate another surgery right now especially in my spine because it isn’t even recovering from the last one yet.  They are putting me into another hyperbaric oxygen chamber on Monday in hopes that it will help the disease, the complications from the past surgery, as well as prepare me for the upcoming surgery… so I guess we will have to see where that takes us.  As of now… who knows?

So… I guess that is where we stand.  I am laying here in bed and in so much pain. They are trying to keep me as hydrated as possible.  They are also trying to give me as much of my medicated ice-pops as possible because my bloods are really low in the counts as well, so they are hoping that not only will the ice-pops help maybe ‘perk’ me up, but they are hoping that it will hydrate me and build up my bloods.  Even though it is so difficult to get things down, we are hoping that the icepops are the best because of all the meds it has in it and plus it is all frozen and such… so it goes down even slower than a regular drink.  You know?

I am a real mess!  I am trying to keep a positive attitude, but I am honestly really scared.  I don’t know what is going to happen or to expect.  I don’t know if I am going to end up in the hospital at any minute because of the complications of this past surgery and as of now it looks like a blood patch is going to be needed on Monday.  I don’t even know what is going to happen to the second part of the operation.  Like usual… my life is chaotic.  But did you honestly expect anything differently?  My life is always a big mess! I think if my life ever went smoothly… I’d worry!!

In the meantime, I did receive a package Federal Express from Georgetown.  I couldn’t imagine what could be so important that it was sent Federal Express and marked URGENT, but when I opened it was a folder that had all the necessary transplant material that I needed.  It was two booklets of all the information that I needed for the transplant and such.  I guess it’s a ‘go’ so far and I am on the list.  When I spoke to the transplant team today and asked them how it looked for me, they said, “they are very interested in my case and I am on the list so far!”  Of course there is a few more tests that can take me off of it though.  The thing is with the transplant, it is so dangerous and such that they said “it’s a fine line.  You have to be sick enough to warrant this transplant, but not sick enough that you will die and not make it through the operation.”  They know that the operation will be by no means ‘easy’ and it will be extremely life-threatening even for the normal individual, but they want there to be ‘some’ chance that I will make it through the operation.  You know? They just don’t want to waste organs.  After all, I need a new stomach, small and large intestine, pancreas, and liver.  I basically need a whole new system.

I just wish I was normal! I can’t wait for the day to say that I am ALL BETTER!! I can’t wait to say that I am back to a normal life. I was robbed of my life by this disease and I dream of the day that I will get to be able to have my life back.  I have such a huge bucket list to do.  I can’t wait to be that doctor that I so wanted to be since a young girl because I really want to make an everlasting mark in the world and help people.  I don’t want others to suffer like I have done.  I can’t wait to be able to get married and move on with my life.  I can’t wait for the day where the most innocuous touch or even the hug from my parents won’t be painful.  I can’t wait for the day when I can eat normally and when I can go to a restaurant to eat.  There are so many dreams that I have and I only hope that one day these dreams become reality.

praying-animated-animation-praying-smiley-emoticon-000338-largeOn that note… I guess I am going to get going.  I am not feeling well, but like I said… I wanted to write and let you know all that has happened.  Everything is “touch and go” right now and what is next… who knows?  I will keep you posted though.  We will see what happens because I do know how much they want to put the pump in me and they want to do the brain surgery afterwards.  However, with this past surgery and complications that have occurred with it… who knows what is going to happen.  I just hope I don’t end up having something really serious happen to me like a stroke or that I don’t end back up in the hospital or that I don’t have to go for another huge procedure and having to go for the blood patch and transfusion.  Why is it everything that I do never goes smoothly?  I guess they should just change the wording of MURPHY’S LAW to MIRSKY’S LAW because whatever can go wrong does go wrong.   But like always… I am going to push away all that negative energy and remain positive because positivity goes a long way.

Thanks again for all your encouragement and support.  I definitely wouldn’t have been able to make it this far without you.  Please continue to pray for me because I need all the support and prayers that I can get.



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August 22, 2013


Just wanted to give you the latest update since things are happening!  Plus, I am in so much pain tonight and suffering so much that I can’t sleep (which is no different than any other night).  I am weakening so much that I basically spend all my time on the couch.  I barely ever get off the couch nowadays as I basically just “lay” the day away… I would say “sleep the day away” but I am in way too much pain to do that!!


I just wanted to let you know that tomorrow… well actually it is today since it is after midnight when I am writing this that I will be undergoing surgery and being hospitalized.  I know I spoke briefly about it in the past, but it has been decided to happen today and it is an emergency, so that is why I am writing to let you know all the new upcoming news.  Oh… before I begin… I also want you to know that August happens to be Gastroparesis Awareness Month as well, so just wanted to point that out as well.    Maybe by bringing awareness to my situation, I can be helped more because more people will know about it.  After all, “power” is in numbers and the more people who is knowledgeable about all that is happening and about this illness, the more we can raise awareness and fight it.  Even if I can’t necessarily be helped, I hope that I can make an everlasting mark in the world and bring awareness and attention to this illness because no one really knows about this illness.  I hope that other people don’t have to suffer the way that I am.  Treatment and a cure need to be found and the more people that know about it… the more it can be sought!

Since I am really deteriorating, the doctors feel that they have to move as fast as possible.  Therefore, they have decided to proceed with surgery.  As I discussed previously, I need to have a pump implanted because of how bad things have gotten. I can no longer swallow medication because it is getting too difficult and I am not absorbing it should be either.  I can literally take the pills in the morning and then when I vomit over 12 hours later, I vomit them back up and I can literally bring them back down to my dad in a cup because they are not dissolved whatsoever. Therefore, it is not really doing me any good because they are not really being absorbed and I am not getting the medication like I should be.  You know?

In addition, I am deteriorating so much that the medication that I am currently on is no longer holding me.  By getting the pump, I will not only have to take it orally anymore as it will continually dispense it, but it is supposed to be so much more powerful.  Instead the medication going into the digestive system and into the bloodstream like it does when you swallow pills, the pump puts the medication right into your spine, which really makes it more powerful.  So they are hoping that by having the pump, it will not only be beneficial because it will avoid me having to take the medications orally since I am having difficulty swallowing and such, but it will also help me more with the pain and such because it will be so much more potent.

However… the pump is an extremely high-risk operation especially for someone in my situation because I am not in any condition to be operated on.  I have no ‘reserves’ either to recover with because I am less than 70 lbs. and I have so many issues going on. Not only do I have the usual risks of having the actual surgery in itself, but I also have the risks of having an external device in me because I am having hardware being implanted in me.  Especially since I have autonomic dysfunction, we have no idea how my body is going to react because my body literally rejects everything and anything. My body can literally shut down and go into total organ failure because of this pump because it will ‘reject’ this foreign hardware. With my illness, my body hates when I mess with it and believe me… I am sure that it is going to make me pay the price because I am going to be ‘messing’ with it.  You know?

Not only do I have the regular risks of surgery, but I have the additional risks of having a severe infection or complication afterwards because the machine can easily erode through the skin as well.  I am extremely thin and as a result, there is no padding really to go over it and cushion the machine. The doctors have a real fear that the skin is going to erode and the machine is going to come through the skin because of how thin I am.  They are also really scared because they don’t know honestly how they are going to fit the pump into me because I am so tiny.  After all, I don’t weigh a lot and the pump is so big.

Even though I am only getting the pediatric size, it is still considered extremely large especially in consideration to my body.  I am way too tiny to have this pump put into me, as I only weigh in the 60 plus pound range.  There really is no room for it.  The doctors told me that it is going to be extremely visible on me, but it is at the point that I don’t care as long as it helps.  It isn’t like I wear a bathing suit anyway.  You know?

SmileyFace_doctorTo help with the implant, the neurosurgeon is going to have a plastic surgeon help him implant the pump into me.  He is hoping that with the plastic surgeon’s help that he will better be able to place it and that the plastic surgeon can possibly ‘build’ something so that it can be placed more comfortably. He is hoping also that it will also be beneficial because it will lead to less chance of it becoming eroded because it is a real possibility especially in the condition and state that I am in.

With that being said, the first part of the operation I found out is going to be tomorrow, which is actually today because it is after midnight.  I am extremely nervous because I know how dangerous it is.  However, this first part needs to be done because the second part, which is much more serious, is supposedly being performed on this coming Tuesday, August 27th.

The first part of the surgery, which is today, is going to be performed at St. Joseph’s hospital. Even though it isn’t as great as hospital as they would have liked for me to be at, it is the only hospital that they could get in such a short amount of time and with everything that is needed.  After all, I need to have scheduled immediate surgery, as well as an ICU room, surgery that entails not just having one doctor in the room but many, etc.  If it was more simple surgery or I was going to be placed onto a ‘normal’ floor… perhaps things could have been different.  However, I need to be put in the ICU because of how dangerous the surgery is and how they are going to have to watch me so carefully afterwards.  In addition, this is not a “one show doc” surgery because with all my medical complications, they need to have multiple doctors in the room in case something should happen.  Plus, there is a lot going on for this surgery and a lot of components.  Each doctor is basically doing his or her own thing.  So to accommodate everything and schedule everything in such short notice because there are so many sick people in this world and such, we had really no other choice but to have it scheduled at this hospital.  I will be having the second part of the surgery, which is scheduled for Tuesday and so much more risky and more intense, at Winthrop.  I am so much happier for that because I know how much better Winthrop is as a hospital, so at least I feel better knowing that I will be there for the more riskier and dangerous operation even though I know this one will not be such a walk in the park.

Messages Image(1246695629)Even though I will be at this current hospital that I really don’t want to be at this time and would rather be at Winthrop, the doctors assured me that I will be OK at this hospital and they will make sure that everything will go according to plan.  They said that especially since I will be in the ICU that I will have nothing to worry about because I am basically on 1 to 1 service and the nurses are very good.  I am really hoping that this is the case because my life is in their hands.  My dad will also be staying with me the entire time, so that is good.  At least that makes me feel a little better.

It is going to be one huge day tomorrow.  During the first part of the surgery, they have to make sure that I am going to be able to tolerate the pump in the sense that I will be able to handle all the medications that the pump will delivered because it will be so much more powerful since it will be delivered right into the spine.  It is considered a law to have this ‘trial’ beforehand because you can’t have any real side effects if you are to have the pump implanted. At the very least, you are to have to be able to handle Morphine even though they are going to be putting in lots of other medications into the pump.  We are hoping to put in snail venom called Ziconitide, which has been proven to helpful, but unfortunately it can only be given through a pump.  So… we will go for the trial tomorrow but since it will be very risky and traumatic (and my disease spreads like a wildflower whenever there is anything traumatic), the doctors have to take the appropriate precautions so that the disease will not spread.  As a result, they are going to be giving me ketamine during the surgery and putting me into a ketamine coma in hopes that the disease will not progress.  Ketamine is a special drug because it is a NMDA receptor and it is supposed to stop the disease from spreading and can even reverse the disease in a high enough dose (of course that dose though that would really reverse my disease is way too high and only attainable out of the country, which is extremely expensive).

I will also be in lots of pain because I am not only in such severe pain all the time and never get a moment break from it, but this surgery is definitely going to exacerbate the pain I am already in and will escalate it.  Therefore, they want to keep me as comfortable as possible and hopefully in order to keep it from spreading they will not only give me ketamine during the operation, but they are going to continue with it after the operation.  Therefore, they are going to keep me sedated in a coma with ketamine and other ‘good’ stuff for the entire time I am going to be there in the ICU.  After all, I can’t even tolerate an IV because it burns up my veins and especially with this trial, I will have to have IV access all the time I am there because it is very dangerous and it can easily cause my body to go into cardiac arrest and give out at any moment.  After all, my body is weak enough on its own… having all this done on top of it will only complicate things more and cause my body to give out more.

I am extremely nervous and scared, but at least I know that my dad will be with me throughout this entire surgery.  Upon leaving the hospital, they are going to be sending me straight to hyperbaric oxygen in hopes that not only will it help me ‘heal’ from this surgery and prepare me for the next, but they are hoping that it will help my overall disease as well.  It is considered ‘experimental’ so all bets are off what is going to happen, but there has been some real promise in that area.  So I am really hoping that it will benefit me as well.  I will be put down into dive that is close to 3 atmospheres and given 100% oxygen.

Hyperbaric Oxygen Therapy (HBOT) benefits your body by helping to increase your body’s ability to absorb oxygen. Oxygen is vital for health; it is the single most important element your body needs. Oxygen is our primary source of energy. Not only does oxygen fuel the body, it supports the immune system by destroying toxic substances. Anaerobic bacteria, fungi and viruses all have a common intolerance for oxygen; they cannot survive in an oxygen-rich environment.  Therefore, they are not only hoping that it will help my overall disease, but they are also hoping that if I did pick up any infection or any bug whatsoever from the hospital (we all know how that is the biggest place to catch something and how many things loom there), I will be able to fight it because the smallest infection is something major to me.  In addition, the body’s vital functions are enhanced by increased availability of oxygen. Increased pressure also stimulates blood flow and decreases inflammation, and has a calming effect. Sleep is enhanced, absorption of nutrients and digestion are improved. At the cellular level, oxygen is required for proper function.

At the very least, my tissues are being deprived from oxygen and as a result, I always end up changing colors.  In fact, doctors are scared that it is even going to end up resulting in amputation.  They are hoping that the hyperbaric will not only promote the wound healing that I need from the surgery, but it will help bring back some dying tissue and nerves.  After all, I also have the severe gastroparesis, which is where my entire GI (stomach, small and large intestines, esophagus, etc.) don’t work.  They are hoping that even though they are extremely paralyzed and most parts are dying… they are hoping that the hyperbaric can stop it and perhaps rejuvenate the nerves and cells.  In short, the hyperbaric oxygen therapy is known to stimulate progenitor cells, effecting repair and regeneration of both hard and soft tissues. Infections in deep tissues and bone benefit from hyperbaric oxygen therapy through direct antibiotic action, or synergistically with other standard treatments. Inflammatory factors are suppressed with oxygen treatments aiding in the healing processes.

So all that is going on for the next few days.  In the meantime, I had to go yesterday for medical clearance from the pulmonary doc to have the hyperbaric oxygen chamber and to have clearance for surgery as well.  When I met with the pulmonary doctor, I was told that she was shocked that I was still alive and going the way that I am.  Doctors are fascinated how I am defying medicine because in the state that I am in and the numbers that I am bringing in, I really shouldn’t be alive.  I am like 60 plus pounds and have an extremely low BMI that is basically unheard of.  Yet… I am continuing to push onward because I am not ready to give up yet.  Doctors are so amazed in how that I am still going and they even say that I must be doing something ‘right’ even though we don’t know what that is.  I am just the “energizer bunny!” I keep going and going and going.

In the meantime, the pulmonary doctor did end up switching my medication though for my breathing because I have been having a lot of breathing issues.  They switched me from my Spiriva to a new medication called Tudorza.  So hopefully it will help better.  The doctor also said that she noticed how ‘noisy’ I am when she listened to me.  I have been aspirating quite a lot and it is so very dangerous. It really worries her because aspirating can cause a whole host of problems.  Not only does it cause difficulty breathing, but also it can lead to severe pneumonia.

The doctor thinks that I am aspirating because of the paralysis of my entire GI system and the extreme Gastroparesis.  Since the gastroparesis has gotten so bad, of course the aspirating has worsened as well.  There usually is a piece of tissue called the epiglottis that normally prevents food from entering your lungs by covering your trachea, or windpipe, as you’re swallowing.  However, due to my gastroparesis, it doesn’t really function the way it should and as a result, the food and liquids keep spilling into my trachea.  Inhaling food, known as aspiration, can cause serious complications, especially if you have a condition that makes you aspirate food or fluids on a regular basis.  Like I said before, the doctors are extremely worried because food or fluids in air passages may trigger an inflammatory response as the lungs react to the foreign substance. Fluid may accumulate in the lungs if a passage is blocked. If an infection occurs, I can easily develop bacterial pneumonia.

The problem is also that I am extremely thirsty because my digestive system doesn’t work, I can’t absorb anything, and I end up vomiting all the time.  Therefore, I am always trying to drink and nothing quenches my thirst no matter how hard I try. It is a no win situation because the more that I drink, the more I aspirate.  Therefore, by the end of the day the aspirations are so much worse because of all the extra fluid I tried to consume in order to quench my thirst.  It really is a nightmare to endure on top of everything else.  My pulmonary doctor told me that something really is in need to be done because of all the aspirations that is occurring.  Ideally, she said that I shouldn’t be taking anything by mouth and should be on tubes.  That is what they were trying to do in the past at Stanford and such, but they couldn’t find a viable portion as of yet in my GI system (in my intestines) to have the tubes put in. That is another reason why I need to have a multivisceral transplant ASAP.

The pulmonary doctor wants me to take care of the GI problems as soon as possible because they are continuing to worsen and they are really causing so many other problems within my body.  They are really causing my other organs to fail among other things.  Therefore, she has referred me to a team of GI at Yale and I am waiting to hear from them.  When I spoke to them, the head doctor had no appointments until December at the earliest, but she said that she would ‘fit’ me in because she saw how URGENT I needed to be seen because it is basically life or death.

In the meantime, I am also waiting to hear from Georgetown in Washington DC, as that is where I am hopefully going for the multivisceral transplant, which incorporates getting a new stomach, small and large intestine, pancreas, and liver.  It is an extremely radical procedure and not many hospitals do it. But it is basically my only chance.  So they are working on getting everything organized to see me.  Never a dull moment.

I just got a phone call though from FEDEX to let me know that there is a package from Georgetown Transplant that is coming Express.  It was supposed to be delivered today, but they had the wrong address for some reason and therefore, they are not delivering it tomorrow.  I am really wondering what it can be because it was marked URGENT and IMPORTANT.

Tomorrow (well actually later today because it is after midnight) is definitely going to be one BIG day.  I have to go for pre-surgical testing at the hospital in the morning before the surgery.  Since my dad has been taking a lot of time off from work and we really can’t afford for him to miss so much work, I was really fortunate to have a friend offer to take me to the hospital in the morning to have the pre-surgical testing work up.  I really wasn’t expecting it, but I am so grateful that he offered.  It really made a HUGE difference because my dad is now able to at least work in the morning before we leave for the hospital, so he is able to get some of his work out and make ‘some’ money.

So my friend will be taking me to Winthrop in the morning for the pre-surgical testing and then my dad and him will switch for the actual surgery.  I am really nervous about the actual surgery, but I guess I have to take one thing at a time.  I can’t believe that my surgery is at noon though and the hospital wanted me to stop eating and drinking by 8 O’clock the night before, which is over 12 hours away from surgery.  I don’t know how on earth I am going to last without dying of thirst.  After all, I am always soooo thirsty.

934071_580181832015418_1966883633_n-2I did realize one thing that is the truth.  I found a quote that describes my life perfectly.  It said, “You know you’re chronically ill when the trash goes out more than you do!”  That is definitely the case with me because I never go out anymore.  I would love to have my life back.  This disease has robbed so much from me and it is soooo unfair.  I can’t wait to have my life back.  You just learn never to take anything for granted because in a heartbeat… it can be taken away.  I have also learned that health is wealth and when you have your health… you have everything!!  People don’t realize it, but as long as you have you have your health… you have everything!!  One day I will be able to have my life back.  One day I will be out of pain.  One day I will be able to have that husband and family that I desire.  One day I will be able to be that doctor that I so want to be.  But what kills me is that all this is contingent on treatment and without the help of others, I won’t be able to receive the needed treatment that is necessary because it is far too expensive for my family to pay for it alone anymore.  I desperately need to help from others.  I only hope one day that I will be able to get my life back because I have such a long bucket list to still do!

Well… talk to you again!!



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August 17, 2013


Well… Just as promised… I told you that I would update as soon as I had news.  However, before I update you on all that has happened today, I want to let you know that I am thinking about taking a new approach to my blogs and Facebook account.  Instead of just writing about the “happenings” and all the “bad” stuff that might be occurring, I am going to change my website into showing more of my entire life and show how hilarious it actually is.  I am going to show you how it is more DYSFUNKTIONAL then ever and hopefully show you videos of doing some things as well.

I really want to make a mark in the world and have been thinking of various ways of doing so.  I also want to bring awareness to my illness because not only could it possibly bring attention so that I can possibly be helped, but maybe I can help others because not much is known about this illness and I can show others as well what it is like to live with a horrendous life-threatening disease and life like this.  I can show people that even though you are dealt a bad deck of cards and your life is totally DYSFUNKTIONAL, it really is still your life and it still is never ‘over’ until the fat lady has sang and there is still so much that you can still do even when the road look soooo gloomy.  I want to show people that even though you may be dealt a bunch of lemons, you don’t have to be sour over everything. Instead, you can just pick yourself up, stop feeling sorry for yourself, and move on!  There is always something that can be done, as you can always make lemonade out of lemons instead of letting them sit there and sour!

So… as I sit here tonight, I was thinking about all the hardships and difficulties that I am going through and decided that I am going to change my blog Facebook page not to just share what is happening in my life, but as a way to give people a ‘laugh’ of all that is happening as well. After all… ‘laughter’ is the best medicine out there. I have so much to deal with and I know that seeing all these posts can sometimes be annoying and I have gotten harsh remarks from people because they don’t realize the life I am facing or the hardships I am enduring. No one really knows what it is truly like to suffer like I am doing until they actually walk in my shoes (and hopefully they never will have to actually experience it).

That being said… let me tell you that having so much to deal with only has made me a better person, and I don’t give a rats ass what ANYBODY thinks about me posting or writing about on my blog page. I know what living is like in MY body every single day… and I really don’t have to answer or explain myself to ANYONE!!  Nobody has the right to judge you in any way, shape, or form… tell you WHAT you should be feeling… or anything else. I know what I AM feeling… and I don’t have time for people who won’t take time to listen, understand, and educate themselves! I need to keep swimming and keep going because this is my life! When push comes to shove, the only person that matters at the end of the day is ME!!

crazy-smileySitting here tonight, I have realized how DYSFUNKTIONAL my life really is.  Not only am I living with a lot of chronic illnesses, as I have a severe life-threatening neurological disease known as Reflex Sympathetic Dystrophy, severe autoimmune autonomic neuropathy – severe Gastroparesis (my stomach is paralyzed and they want to do multivisceral transplant on me), severe Autonomic Dysfunction, Osteonecrosis, Pituitary Brain Tumor and lots more… but my Autonomic Nervous System is in a constant state of chaos, as it fires signals constantly and everywhere. I have little control l the signals and messages sent from my brain and therefore…All the signals and messages sent from my brain do whatever they feel like it! So in a nutshell I have little or no control over my body!

I am in severe and excruciating pain 24/7, I vomit constantly and can’t keep any food or drinks down, I collapse daily, I use crutches to get around, my blood pressure is extremely low, I have severe bradycardia, I have abnormal blood values so that the doctors are worried about my heart stopping and of me having cardiac arrest, I am extremely hypersensitive as the most innocuous touch is extremely painful to me and I can feel absolutely everything and anything (even the breeze from a door closing or the heat from someone putting their hands around me and not even touching me), I can’t sleep, I spend most my life in and out of the hospital, my calendar is filled more of doctor appointments/procedures than of fun social events, I have a headache nonstop every day, I take over 50 pills daily (including methadone, morphine, dilaudid, nucynta, etc. — and I am on more meds than can kill a horse), I go into ketamine comas/infusions, and well the rest you’ll just have to pick up if you get to know me 🙂

imagesBut what does this all mean? It means that my life is basically totally ‘dysfunktional’ and unless something is done to cure me… I am rapidly deteriorating until I will eventually leave my body and body and move on to hopefully a body that I can control. But don’t worry… I don’t let this get me down, as I want to make a difference in the world and do as much as possible… even if it means making people aware of my illness and laughing because ‘laughing is the best medicine out there!’  So I decided to change the way things are going as a way of not only bringing awareness to my condition and showing all that I am experiencing, but also as a way of letting you experience an unbelievable journey… a journey that I am sure will give you a few laughs along the way!   I don’t care what anyone thinks of me…I know how I am feeling in MY body and I am doing my best to survive on a daily basis. If people can’t accept that, well they move on to the next page.

Anyway… I guess I will now tell you all that has happened today.  It is officially confirmed that HOPKINS is canceled for Sunday. I am kind of disappointed, but it is probably for the best.  It is canceled because I am going to be going for mega surgeries soon and I am going to have to be seen at another hospital known as Georgetown in Washington D.C.  Let me explain.

First of all… let me tell you that surgery has been scheduled for Tuesday, August 27th at Winthrop.  It is 99.9% certain that it is a ‘go’ but of course it is all contingent that I get all and pass all of the pre-surgical testing.  I also have to go for a trial surgery this upcoming week and providing that we have no real complications and the medication doesn’t prove to cause too many problems, it will further determine if surgery is a “go” for the 27th.

SmileyFace_doctorI saw the neurosurgeon today and it appears that he will be implanting the pump in me on August 27th at Winthrop Hospital.  I can’t believe that I am at least going to be able to have this surgery in New York.  I am so glad because this way I am close to home and I will be able to have the comfort of my entire family being there.  Usually I only have my dad with me because my dad is the one who travels with me across the country.  However, now that I am close to home, I will be able to have as many visitors as I want and I will especially get to see my family, which is very important to me. It gets so lonely and scary in the hospital, so to be able to have visitors (especially my family able to visit), it really is a plus.  Usually I am so far away that the only visitor that can come is my dad.

I will be having a pump placed in me, which is an automated piece of equipment that is programmed to deliver medication into the spinal fluid through a catheter.  Unlike medications that circulate throughout your body in your bloodstream, drug delivery therapy releases medication directly into the fluid surrounding your spinal cord, which may lead to fewer or more tolerable drug side effects.  The pump releases prescribed amounts of pain medication through the catheter directly to the fluid around the spinal cord, in an area called the intrathecal space. The pain medication approved for use in the pump includes morphine sulphate and ziconotide.

Since I am deteriorating so much, they think that I desperately need this pump because it is at the point that I am having too much trouble swallowing my medication.  In this way, I won’t have to swallow the medication, as it will be delivered directly into my spinal fluid.  It will also be more powerful and potent than taking pills, which is something that I desperately need.  The illnesses have become way too painful and it is at the point that nothing is helping to alleviate the pain even a little.  I am literally climbing the walls.  Therefore, they are hoping that by getting the pump, it will give me better pain relief.  The doctors are also hoping that the medications will be able to possibly work better because I will not have to absorb the medication through my digestive tract first, which is paralyzed and then go into the bloodstream.  I can literally swallow my bills and when I vomit over 12 hours later, I can still see my pills that are not dissolved.  By having this pump, it will bypass the digestive tract and I won’t have to worry about pills having to dissolve.  Finally, it will also cut down hopefully on the amount of medications that I need.  I take over 50 pills daily and I am on high doses of meds, which also cause further problems.  After all, nothing ‘good’ comes without paying a price and of course all medications come with side effects. Unlike oral medications, drug delivery therapy releases medication directly into the fluid surrounding your spinal cord rather than traveling throughout your body in your bloodstream. This may lead to fewer side effects, such as nausea and constipation

The surgery is very dangerous in itself, but it is even more dangerous for me because I am not like the typical patient.  I am medically unstable, I only weigh in the 60s, I am malnourished, and I have this illness that worsens and spreads like a wildflower if any trauma occurs.  I also have severe autonomic dysfunction and as a result, it can cause many complications during the surgery especially changes in my blood pressure, heart rate, etc. at any time that can easily throw me into cardiac arrest and stop it.  I am already in extreme pain 24/7 and going through surgery will only make things worse.  Not only will the surgery in itself be dangerous, but so will the recuperation and recovery because I don’t have the ‘reserves’ such as the nutrition and ‘fat’ to recover.  I can easily catch an infection and if I do suffer any complication whatsoever, it can easily become life threatening because anything minor is something major in me because everything is scaled upward in me due to my illnesses.  I also risk getting inflammatory masses at the tip of the catheter, which may lead to complications, including paralysis.

Not only is the actual surgery dangerous, but I will also be having a hardware being placed in me.  That means that there will be a foreign object being placed in me.  Not only do I run the risk of my body rejecting it because my illnesses do not tolerate foreign objects (it doesn’t even tolerate IV lines), but I also run the risk of infection not just from the actual surgery itself, but from the device afterwards as well.  Since I am so thin, I don’t really have any cushioning or padding for it and as a result, it can easily erode through the skin.  That being said, it can easily become infected or cause additional complications.

The doctors are extremely fearful that I am going to have many complications of having the pump implanted because I am so thin such as the catheter or pump moving within the body or wearing through the skin. The catheter could even leak, tear, kink, or become disconnected.  That being said, the neurosurgeon has arranged for a plastic surgeon to be in the room as well during the operation because he is going to try to help fit the pump in me since I don’t really have the space necessary for it.  The Plastic Surgeon is going to try to build me up an area that will have more cushioning and padding and hopefully be able to fit the pump better in me.

I can’t believe that I am going to have a Plastic Surgeon in the room on top of everyone else.  It is going to be like standing room only in the room because there are going to be so many doctors in the room due to my complex condition.  They will need a separate doctor to monitor each aspect of me and they will even have a backup in some of the specialties that are in the room just in case they run into a problem. For example, there is going to be more than 1 anesthesiologist in the room because if there is a complication there will be someone there to help the other anesthesiologist out.

I just never thought that I would ever be having Plastic Surgery.  I made a joke when I heard that I was having Plastic Surgery and I said that I was making a list of all the things that I wanted to have done when I was under.  I told the Plastic Surgeon that I wanted to have my nose redone, breasts implanted, a face-lift, etc.  He thought it was really funny.  Even though this pump is going to be extremely prominent in me, I really hope that it works.

So I will be having the surgery on the 27th and it will be a long day.  I will then be put into the ICU because of how hard the surgery will be on me.  I will also be given ketamine during the operation and afterwards to try to keep me comfortable and as a way to try to not spread the disease, as any bit of trauma can potentially spread my disease and surgery is extremely traumatic and basically a ‘guarantee’ to spread it.  So hopefully by taking all the precautions with the ketamine (by having it during and after), we will be able to control the illness and have it not spread.

Of course this surgery on the 27th is contingent on being able to tolerate the trial.  I have to go into the hospital for two days this upcoming week so that I can be given a ‘trial’ of morphine because it is the law to be able to tolerate morphine intrathecally if a person is to get a pump placed in them.  Even though I will be getting additional medications placed into my pump, I have to at the very least be able to tolerate the morphine if the doctor is going to be able to implant the pump.  So I have to go for this trial and be monitored because a lot of complications can arise from getting morphine intrathecally, as it is extremely dangerous.  A person can easily stop breathing or have severe side effects or have their heart stop from it. However, since I cannot really tolerate an IV line because of how hypersensitive I am, the doctors said that they will keep me as ‘drugged’ up as possible and give me plenty of valium and other goodies while I am in the hospital so that I am not bothered by the IV lines or the other stuff that is occurring while I am there for the trial. But if all goes well, then the surgery appears to be all set for the 27th.  I will let you know when the trial is set for when I get the date.  I probably will get the date on Monday!

I am kind of really excited to get the pump, but also really nervous.  Besides the actual operation, which I am extremely nervous about, I am really nervous about how it is going to feel inside of me.  I am so scared it is going to hurt me every time I move because I have to padding or cushioning and I it is basically going to be rubbing on my skin constantly and touching my organs.  I am only hoping that I don’t develop any further complications such as erosions or anything because of all this ‘rubbing’ because I am so thin and everything.  But hopefully that with the help of the Plastic Surgeon… all this can be taken care of.

images-1Even though I know that this pump is going to be extremely visible because I am so thin, I am still wanting it because I am so desperate for something to help me since I am suffering so much.  I really can’t stand swallowing my medications anymore and this way I will be able to avoid it.  The only thing that stinks is that I will have to have the pump filled every month by the doctor, which entails getting stuck with a needle and having it filled that way.  I just hope though that they will be able to hide the pump as much as possible because even though I don’t care how it looks, I don’t want it to look like a third boob because I am so small on top and so thin that it probably will look like I have three boobs except one is below the other two.

In addition, the neurosurgeon proposed to do brain surgery on me.  It just never ends.  It appears that after this surgery that I am more than likely going to need brain surgery.  It is considered experimental, but when you are at bottom of bucket and desperate for something to work, you really have no other options.  The doctor said that I have been struck with one of the worst diseases that can ever exist and I am also the worst case of that disease that exists too.  He said that there really is no quick and easy fix and unfortunately… there are only these really radical and high-risk operations.  So… the doctor will be most likely putting a machine in my brain in a way to help control the neurological disease and autonomic dysfunction after the pump.  When I asked the doctor how soon after this operation of implanting the pump will the brain surgery be, he said that it “won’t be long after!”  So he is not going to have me wait long, which was a big fear of mine because I really don’t have the time to wait.

Hopefully between the pump and hyperbaric oxygen, I will be able to be helped in terms of the neurological disease and autonomic dysfunction.  I am really hoping.  I am also hoping that it will do something for the severe Gastroparesis too, as it had something to do with it as well.  But since this is really all considered ‘experimental,’ we really don’t know how this is all going to end up.  I am really hoping I won’t need the brain surgery, but in realistic terms, I know that it is a real possibility.  I just hope that I made the right decision by postponing HOPKINS.  The doctors really wanted to get the pumps in me and everything, and they said that they really didn’t want to do it with the tubes too.  So that means that it would have to occur before I went to HOPKINS or any other hospital that wanted to put tubes in me to feed me.

In addition, my gastroparesis is getting extremely worse.  I only weigh in the 60s and I am having more difficulty in swallowing as time goes on.  I am also becoming more bloated and distended and something really needs to be done.  My BMI is basically off the chart and unheard of, as it is a miracle that I am still alive because it only is 10.8.  Even the doctors have stated that they don’t know how I am still ‘alive’ with those numbers, but I just keep telling them that I must be doing something right.  The doctors say that I really must be and that it is because of the great support I get from others.  Of course if I didn’t have the support that I had, I would never be able to come this far.  It is really from the support and encouragement of others that has gotten me over the big bumps in the road and has gotten me to be able to push forward.  It is the support and encouragement that rejuvenates my batteries to continue fighting.

Well, since my gastroparesis is worsening and I also have the obstruction/twist in the colon, I really need something to be done in that area as well.  Therefore, my doctors in California have contacted Georgetown and are awaiting to hear from them for an appointment.  Ideally, California would be the best place to go to, but unfortunately, my head doctor is no longer there and as a result, they have stopped doing the transplants.  Therefore, all they can do is the tubes and remove the obstruction.  However, the doctors feel I am beyond that and the only real cure and answer is to receive a radical and risky multivisceral transplant that entails getting a new stomach, small and large intestine, pancreas, and liver.  So since California no longer does it and Hopkins doesn’t do it… I am being sent to Georgetown because not only will I be able to get the tubes that they all can do, but Georgetown is also one of the six hospitals in the country that do this transplant.

After speaking to Georgetown, they want to get me into seeing them as soon as possible.  There is a whole team of doctors to see and originally they wanted me to come September 3rd to see one doctor and then a later date to see other doctors on the transplant team.  However, if I am having the surgery first on the 27th of August, I am no way going to be up to traveling (especially on a plane) by the 3rd.  We don’t even know how long I will be in the hospital because everything is magnified for me.  I will be in the ICU and in the hospital for at least a couple of days.  In addition, the pain from the surgery will be much more magnified for me than for the average patient having this surgery because of the nature of my illness.

In addition, we really wanted to try to arrange all the appointments at the same time because we really don’t have the expenses to keep traveling back and forth.  It is also extremely hard on me to travel as well.  So, since we have to go all the way to Washington DC to go to this hospital, it would be better to have all the appointments set up at one time so that we will only have to make one trip down to see them.  You know? So we are awaiting to hear from the transplant team when they can see me and we will work it out with them.  As it is, it appears that it will be occurring in the latter part of September and early part of October. I just hope that I can make it that long because of everything that is occurring.  I am really losing weight, my stomach is killing me, I am more bloated than ever, and my mucous smells like rotten eggs when it is expelled (the doctors says it is because I am fermenting). To think… this will be the first time ever that my dad is in Washington DC.

ddb529b99a3e3d010d1dfd104b44483eWell… I also just wanted to let you know that the month of August is known as Gastroparesis Awareness Month.  According to the National Institutes of Health and the National Institute of Diabetes and Digestive and Kidney Diseases, gastroparesis is a disorder in which the stomach takes too long to empty its contents. Specifically, gastroparesis is the result of damage to the vagus nerve, which controls the movement of food through the digestive system. For persons afflicted with gastroparesis, food remains in the stomach instead of continuing through the digestive tract normally.

Gastric motility disorders have a huge impact on ones life in many aspects. The two motility disorders, which I have are Gastroparesis and chronic intestinal pseudo-obstruction. These conditions are not just inconveniences. They are disabling, and in some instances, can even be fatal. There are few treatment options available, and even those have complications and limited effectiveness. Little attention has been given to these illnesses for research due to lack of awareness of the need.  Some people suffer only from gastroparesis, while others battle the intestinal pseudo-obstruction. However, it is not uncommon for people to develop both conditions in which case the entire GI tract does not function, making the already complicated conditions even harder to treat, which is the case with me. The impact that these conditions have on ones life can be profound depending on severity and response to treatment.  Malnutrition and dehydration are common leading to the need for feeding tubes or IV nutrition in severe cases. The effects of chronic malnutrition create problems on other parts of ones body resulting in additional complications. Hospitalization is often frequent in order to enhance nutritional status or treat symptoms.

So I just wanted to bring awareness to these illnesses because this month is known for awareness for these illnesses.  One of the most frustrating aspects of dealing with Digestive Tract Paralysis is the unpredictability of the condition(s). Each day may be filled with ups and downs and this makes it hard to plan or manage life. Although following a specific diet or treatment protocol can better control symptoms, often there is no explanation for a drastic change in symptoms from one moment to the next. They are poorly understood and often not believed by those not suffering. They are considered to be “silent illnesses,” a term which refers to the fact that it is not always apparent on the outside how sick one actually is. This may lead to comments from others stating “but you don’t look sick!” It is not uncommon for one to be accused of making them up or suffering from eating disorders.

Often patients are misdiagnosed for years and do not receive the proper treatment.  In addition, lack of awareness inhibits the ability to seek funding for better research. Digestive Tract Paralysis is under-recognized, so therefore ignored by many medical companies, pharmaceutical companies, and the FDA. Drug approvals are slow, at best, and many drugs which have been effective are so easily pulled from the market due to unsubstantiated side effects in only a handful of people.  That is why there aren’t really a lot of great options in helping me and why the options that are available are so expensive.

Well… I just wanted to share the latest news.  I hope I didn’t bore you too much with all the info.  I will let you know all the latest updates and such with all the upcoming surgeries and such, as well as the start of the hyperbaric oxygen because we are going to be hopefully starting that too.  Hopefully with all of this stuff, I will be able to get some help and some relief.

Like I said also in the beginning of this blog, I am going to try to revamp my website and Facebook page to make it more ‘laughing’ and showing more of my ‘DYSFUNKTIONAL’ life and such because like I said before… laughter is the best medicine and with all that I am going through and such… we all can use it! Besides trying to raise funds for my treatments, which I desperately need in order to survive because we cannot afford them on our own, I am also trying to make a mark in the world.   I am hoping through my website and Facebook page that people will learn that they can still move on with their lives even though they were given a huge setback and obstacle to go around.  As Richard Nixon once said, “Never let your head hang down. Never give up and sit down and grieve. Find another way. And don’t pray when it rains if you don’t pray when the sun shines.”



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August 16, 2013


I know I haven’t written in awhile, but to be honest… everything is really in a whirlwind and I am not doing too well.  I haven’t really been feeling well and even tonight I am really bad night. As we speak right now, dad is contemplating whether to bring me to the ER because I am not doing too well and rapidly deteriorating.  Everything lately has been ‘touch and go,’ but unfortunately there is no easy answer.  Even though I am not doing too well though, I really wanted to write tonight to you and let you know a bit of all that has been going on and happening because a lot has happened.  I just don’t know how ‘coherent’ and understandable all this will be considering everything that is happening tonight.

SmileyShocked_thumb[1]I am not doing well and we are supposed to be leaving for HOPKINS on Sunday.  However, we don’t know honestly if that is going to happen because not only are the finances not there (which really makes it a hardship to go), but a lot of unexpected complications have occurred and there have been a lot of unexpected twists and turns… not just with me but also with the HOPKINS healthcare system that has played a huge role in the care that I will receive.

First of all, I have had a really bad accident about a week ago that really caused an exacerbation of my illness.  I ended up dropping a soup can on my foot and unfortunately, it really caused my disease to flare up because any bit of trauma to my body is really MAJOR to me and causes my disease to flare up and spread.  When you have my disease, I constantly suffer from excruciating pain 24/7.  However, when I had this even more painful event occur, you can just imagine how much more pain I was in.  If I was climbing the walls and couldn’t deal with the pain before the occurrence with the can despite taking all the pain medications that I am on (the methadone, morphine, dilaudid, nucynta, ketamine, etc.), you can imagine how much I am suffering now.

In addition, when you have a my neurological disease, cases don’t present as they typically do and you have to be extremely even more careful in treating the problem.   That being said… when I dropped the soup can on my foot… my foot immediately swelled, felt broken, looked broken, and even developed a huge fracture blister.  However, with my disease, you can’t immobilize any limb or anything because that would cause immediate harm and cause my disease to definitely spread.  So to be honest, there really isn’t much that can honestly be done for a ‘break’ except to know about it, watch it, and to make sure that it doesn’t get further injured.

I have a real problem though with my disease though because I can’t ‘heal’ like a normal person and or have normal circulation.  The doctors are always fearful that I am going to lose a limb (especially my left leg, which is where the soup can fell on because that is the worse limb), because I change all these different colors and even turn black as night.  It used to be that when I elevated the limb, the coloration somewhat went resumed normal coloration, but lately that doesn’t even occur.  The disease is really getting so bad that no matter if it is raised or dependent, my body remains discolored.  I can literally go from normal coloration to totally black in a split second and that is why I have pictures documenting it because I don’t want doctors or other people to freak when it happens. I know for sure that I would definitely freak or think it is totally bogus if I saw someone change colors the way that I did.

Of course turning black and discoloring is not good because it means I am being deprived of oxygen.  The doctors are even fearing that if I get well that I may still even end up losing a limb (especially my leg since it is the worst) because it has been deprived of oxygen for so long and so much tissue has already died.  Anyway… I have to be extra careful not to get it infected or to further injure it because it won’t heal.  It can easily get infected and go gangrene and if that occurred, I would definitely need it to be amputated.

Since I am so very sick with my neurological disease and have all these problems going on such as the circulation problems, the pain, the extreme gastroparesis (my GI system is paralyzed and has basically ‘died’ because the nerves don’t work anymore), autoimmune problems, etc. I have been trying everything under the sun to try to get well.  However, a new doctor recently joined our team and she has just been simply wonderful.  She has been more helpful than ever and to be honest, I am so happy that she is on our team now because I feel like if I am ever going to get better… it is going to be now because she is on the team.  Not only is she knowledgeable and treats me like a patient, but she treats me like a ‘daughter’ as well because she just doesn’t think as a doctor but as a mom as well.  She isn’t just interested in her field like most doctors are.  Instead, she is interested in helping the whole entire person.  She even stated that she is ‘emotionally involved and going to help me in any way possible.’  I am so glad to hear that because she really is such a wonderful person.

That being said… she has really started the team in working to getting me treatment.  We are going to be trying hyperbaric oxygen to see if possibly it can help.  It is of course experimental, but I am really hoping that it will help. Hyperbaric Oxygen Therapy (HBOT) benefits your body by helping to increase your body’s ability to absorb oxygen. Oxygen is vital for health; it is the single most important element your body needs. Oxygen is our primary source of energy. Not only does oxygen fuel the body, it supports the immune system by destroying toxic substances. Anaerobic bacteria, fungi and viruses all have a common intolerance for oxygen; they cannot survive in an oxygen-rich environment. The body’s vital functions are enhanced by increased availability of oxygen. Increased pressure also stimulates blood flow and decreases inflammation, and has a calming effect. Sleep is enhanced, absorption of nutrients and digestion are improved. At the cellular level, oxygen is required for proper function.

Mild Hyperbaric Oxygen Therapy has been shown to benefit many people and therefore, I am hoping it can benefit me.  It has helped athletes desiring peak performance and rapid recovery from workout or injury, anyone seeking general health improvement and relief from non life threatening conditions, such as headaches, fatigue, arthritis, asthma & allergies and more, people requiring rapid recovery from injury, trauma, or those preparing for or recovering from surgery, and sufferers of chronic and/or serious medical conditions or illnesses such as Multiple Sclerosis, Lupus, Lyme Disease, and more.

Hyperbaric Oxygenation Therapy, however, can make the switch in the brain back to the central nervous system.  The affected parts of the body and the brain are treated by different atmospheric pressures, as different undersea depths work on different parts of the body. Deeper depths (up to 33 to 45 feet undersea) work more on tissue and bone, while milder hyperbarics (such as 18 to 24 feet undersea) work on the brain.  Hyperbaric oxygen therapy supersaturates tissues that have been deprived of oxygen because of the swelling of a limb. Specifically, saturation levels of oxygen in blood and tissues increase 10 to 20 times while in the chamber. Further, the hyperbaric oxygen therapy has a tendency to constrict vessels by about 15 percent, which causes a decrease in swelling from the edema present in most people with my neurological disease.  With my disease, they are hoping that there could be a reduction in pain, improvement in sleep, The thought is that even if I have necrosis in my tissues and in my GI system, they are thinking that besides helping with the other stuff, perhaps it can restore neurological function and tissue life. So… I am definitely keeping my fingers crossed that it can help me.  It definitely can’t do me any harm, so it is definitely worth a shot.  I was told that almost always, the first symptom to come is the last to go.

Of course I don’t want surgery and tubes and such because it is not only very risky and dangerous in general but it is even more so for me because I am not in the best condition.  In fact, the doctors are very skeptical about doing any surgery or procedure on me because I can easily die because of how medically unstable I am and how sick I am.  After all, I am only weighing in the 60s and have a BMI of 10.8.  Even if I make it through the surgeries, the recovery will be so hard on me because I don’t have the necessary ‘reserves’ to help me.

So… the doctors were thinking that perhaps seeing if the hyperbaric would improve my condition and get me stronger before I had the surgeries.  This would mean postponing Hopkins for a bit, which is really a scary thing to think of because I am so very sick right now and postponing could be definitely the wrong decision because I could easily go in the other direction.  Instead of hoping that this time of receiving hyperbaric oxygen will buy me time and get me stronger, it can also not help me and I can further deteriorate, which will further harm me because it can easily kill me because I am so weak as it is and can’t survive much more.  Plus… it would also make me weaker for surgery too at a later date. But on the other side of the coin… it could really make a HUGE difference and perhaps really improve my situation.  It can easily save my life.  Whereas these operations can easily kill me just in themselves, the treatments with the oxygen can rejuvenate my system so that when I do have the surgeries I will be better off and better able to heal.  So… we really have to decide if we want to take the risk.

In addition, there are other components that are weighing into possibly delaying treatment at HOPKINS.  Another big component of delaying treatment there is that they want to put a pump in me to give me medication 24/7 and the doctors don’t really want to do it after I come back from HOPKINS with tubes.  As I am rapidly deteriorating and worsening, my meds are not holding me anymore.  I have tried every single medication out there and currently take over 50 pills daily.  I even take injections and yet… I am constantly in excruciating pain.  I am also having the problem of swallowing because of my autonomic dysfunction and neurological disease and therefore, it is making it literally impossible to get the medication down too.  In addition, I am also not always absorbing all the meds too because of my gastroparesis.  I can literally take my meds in the morning and then when I throw up over 12 hours later, I can actually bring my pills to my dad in a cup that are still ‘whole’ and that I took 12 hours earlier because they are not dissolved or anything.  So it isn’t like they are doing me any good that way either.  You know?  Plus, taking all these medications are only complicating my Gastroparesis too because I am taking so much.  If I would get the pump, I would need far less meds because the amount needed to get the same effect is so much less because it goes directly into the bloodstream and spinal cord instead of having to be absorbed into the digestive system like pills do.  The pump would also benefit me because like I said before, I can’t swallow anymore, as even swallowing ices and egg whites (which is the little things I can get down) is getting impossible.  The pump would make sure that I get my medication because I wouldn’t even have to bother swallowing anything.  So it would really benefit me in a lot of aspects.

SmileyFace_doctorDoctors have always been hesitant to put a pump in me because of the size that I am.  I am really small and even the pediatric pump is too large for me.  But it is at the point where we are really running out options and it is really becoming crucial for me to get medications because I am extremely deteriorating and in severe pain.  Therefore, my new doctor that has joined our team did some searching and found a doctor that said that this pump is a MUST and should be done.  However, it is a multistep procedure to be done and it is a ‘team’ effort.  It isn’t just up to this one doctor.  There is a whole team of surgeons that must do it and therefore, I am meeting with the final surgeon tomorrow to see if he will do it.

I really need the pump and so far all the surgeons and doctors are on board except for the doctor who will be ACTUALLY implanting the pump.  I first have to meet with him tomorrow to find out what he says.  I am hoping that he will consent and be willing to do it like all the other doctors want to do because I desperately need it and they think it will really benefit me.  The surgeon had no appointments, but thankfully he is fitting me in because he knows how urgent this situation is and how much it is needed.  He knows that I need to know tomorrow if he will be able to do the surgery because it is basically resting in his hands.  If he is going to be doing the surgery, then more than likely it will result in HOPKINS being postponed because like I said before, the doctors do not want to do this surgery afterwards because they don’t want to do it after tubes get placed in me.  So we really need to know what we are dealing with beforehand.

If the doctor does consent to do the pump, it will be a multistep procedure.  I will have to be admitted into the hospital for about 2 days to first trial it.  They will have to give me morphine by IV into my spine because that is the law to see if I can tolerate it.  Since I am so medically complicated and unstable, they will of course keep me in the ICU.  The doctors told me that since I cannot tolerate an IV because I am so hypersensitivity and everything causes me pain (even the fluid running in the IV), they will keep me totally sedated during this time in the ICU with high doses of valium and other sedatives so that I will be so groggy that I won’t feel any of it.  So at least that is good.  If I can tolerate the morphine, they will then implant the pump.  Of course there will be other medications that will go into the pump, but the law is that I must be able to tolerate morphine if I am going to have the pump so that is a MUST medication to be able to tolerate prior to having it implanted.

The pump will probably be implanted at Winthrop and I will most likely need plastic surgery because of how small I am.  There really isn’t a lot of space to put the pump in and the doctor can’t even put the size pump that they really want to put in me or in the location that they normally put it in.  The doctor will probably need a plastic surgeon to build me a location, but we will get all the details tomorrow… providing that the doctor is willing to do the operation.  So I am keeping my fingers crossed that he will give the OK to do it and of course I will let you know.

In addition, another thing that is also factoring into delaying HOPKINS is that even the hospital itself has changed there.  The hospital is moving away from drugs and only really giving the drugs that I need to ‘end of life cancer patients.’  Even though I am considered ‘terminal,’ I cannot receive the needed drugs because I am not considered to have ‘cancer.’  I am not too sure why they are moving away from all these medications that I need like the ketamine and pumps and everything else.  Maybe it all has to do with money.  Instead, they are doing interventional pain management, which means that they are just doing injections and stuff like that.  That means that people will have to constantly see them and have shots instead of being able to manage themselves at home.  I know injections and such are much more expensive and in this way it makes sure that the doctors also get more money because it forces the patient to always have to see the doctor because it is the only relief that they can get because there is no other way to manage their pain.  You know?  So I don’t know if it is a matter of health benefits or because they are becoming more money grubbing that they are changing the way they practice medicine.

With that being said, we don’t know if I will be kept so comfortable.  With me suffering the way that I am, I don’t know if I will be able to handle all that is going to occur down there with the way they will be managing my case.  I can’t be treated like a typical patient as it is and I will not be able to tolerate the pain that will accompany the surgery if they don’t put me on a ketamine pump afterwards. Also, if they are going to be giving me tubes and other stuff, I am definitely going to need intense methods to manage the pain such as the ketamine but they don’t know if they will be able to give it to me.  Not only will that hurt me because I will be in pain more without the ketamine, but I also need the ketamine to hopefully stop the spread of my illness because my illness spreads through trauma.  You can bet your dollar that with all the ‘trauma’ that I will be going through at Hopkins between the surgeries and everything that the disease is going to spread like a wildflower.  When I went for the surgery in California the last time to put the tubes in, the disease spread and I couldn’t even stand up.  Thank goodness though the doctors rushed me into the ICU and put me into a ketamine coma/infusion because it reversed the damage and got me able to stand back up again.  But I was really freaking out because I thought that was it!  Ketamine is a ‘magic’ drug because it cannot only help me with the pain, but it can reverse the disease too.  That is why I need such a high dose that is not FDA approved and why I so desperately need to go out of the country to get that coma (I really feel like if I got that high dose coma that I could be cured).  So I just don’t know what they are going to do.

To be honest… the best hospital I ever was at was in California.  The only bad part was that it was located on the other side of the country and therefore, it wasn’t so easy to get to and it was hard on me especially to travel it.  However, it really was the best overall because it had the best doctors, nurses, etc.  We never felt so comfortable there with the entire hospital because not only were they so knowledgeable, but also the care was off the charts.  Everything there was phenomenal.  With how I am deteriorating and getting worse, the best place for me probably would be back there.

The problem though is that my head doctor that I had at Stanford hospital in California has left the hospital this month and moved to another hospital. Therefore, what I need to have done has been changed.  Even though the rest of my treatment team is there and can still do what my head doctor proposed and such, it is still not the same as if my head doctor was still there.  In addition, I really need a multivisceral transplant, which is a transplant of the stomach, small intestine, large intestine, pancreas, and liver.  It is extremely radical and risky and to be honest… only 6 hospitals in the country do it and they are very skeptical that I would even survive it.  However, it is becoming basically my only option.  They had this transplant in California, but since my head doctor has left the hospital, they had to stop it.

So after speaking to my team of doctors today in California, they agree with me that I need treatment and something to be done immediately because time is definitely not on our side.  They said that I can come to them, but they also said that they don’t have the transplant going anymore, which is something that I most like will require.  That being said, they want me to go to the next best hospital to have the transplant, which is Georgetown in Washington D.C.  The doctors ended up faxing over my records and speaking to the hospital there and I am supposed to call them in the morning to find out when I can get the soonest appointment.  I don’t know where I am better off going.  If I don’t go to HOPKINS because I don’t know anymore if that is the best place for me because they won’t be able to manage me after surgery and for the rest of my diseases and pain, I don’t know if I am better off going to California or to Georgetown.

5747172864_ThinkingSmiley20080529130222_answer_101_xlarge_answer_4_xlargeI really have to decide where I am best off going.  I would love to go back to California because I know my doctors there and I know the treatment there is phenomenal.  However, knowing that they don’t have the transplant available, I don’t know if it is worth it.  However, I don’t know 100% if Georgetown will do the transplant because even though California would want to do it if they had the option, it doesn’t meant hat Georgetown would be willing and wanting to do it even though they had the capabilities to do it.  So I don’t know if it is worth going to Georgetown because it is again more time and money… which is something that I don’t have.  At least if I go back to California, they will take care of me quickly.  They can admit me directly into the hospital and do the surgeries and everything.  However, if I go to Georgetown, I first will have to wait and get a consultation and then see where it goes.  I have never been a patient at Georgetown either, so who knows how long the waiting list to see the doctor is. Hopefully it won’t be long because my doctor contacted them.  As it is… if I was a new patient going to my doctors in California, the soonest appointment she had was not until February.  Can you imagine?  So who knows when the soonest appointment would be for Georgetown.  Thank goodness though that my doctor in California wouldn’t make me wait that long.

So… I have so much to think about and decisions have to be made quickly because I am supposed to be leaving for HOPKINS on Sunday.  I am meeting with the surgeon for the pump tomorrow and I am also speaking with all the doctors from the varying hospitals tomorrow as well so that I can get all my cards on the table.  Hopefully by the end of tomorrow we will know what we are doing!  I will definitely keep you posted.  Something really has to be done though and we have to have a plan of action because I am suffering so much.  I am really getting worse because not only is the pain getting worse, but so is the neurological disease, gastroparesis, and autonomic dysfunction.  I am really bleeding and we don’t know where from, I am getting a lot of mucous still, and I still can’t go to the bathroom.  I am also becoming more distended and bloated (filled with air) more than ever because of the obstruction or twist in the colon, and I am so uncomfortable.  I walk around literally holding my belly and feeling like I am 9 months pregnant and ready to give birth.  I really need someone to ‘pop’ me.  Something really needs to be done quickly because I am suffering so much and worsening.  I just don’t know honestly how much more of this I can take.

My disease has really taken off though.  I have been really weak and in lots of pain.  The doctor raised the dose of ketamine that I have been taking at home.  There have been so many times that I am so close to going to the hospital, but I don’t go because I am so scared that I won’t come home.  I don’t want to die in the hospital and I don’t want to be left there.  Even though I know my parents can’t be with me 24/7 because they have to work and such, I really don’t want to be left there because I can’t be treated like a regular patient.  The slightest touch or the slightest wrong move can really exacerbate my illness and cause me severe pain.  At least when they are around… they are like my guards in the sense that they make sure that no one touches me because people sometimes bump into me by accident or they touch me by accident like when they are examining me and such, which causes me extreme pain.  They also make sure that I get the care that I need because I am not a typical textbook case and I can’t receive the same care as a regular patient.  For example, I can’t get IV like a regular person and I need meds on a certain schedule too.  They make sure everything goes how it should.  After all, when you are in a hospital, you really need someone by your side to advocate for you because I have seen so many times that things are done more for patients that have people by their side than others who are alone!  In addition, I don’t want to go to the hospital because I am so scared that they will only make me worse because like I said before… they can’t treat me like a regular patient and things that they might think might ‘help’ me actually hurt me.  Like I can’t have a blanket on me and they come over and cover me. I also need the thermometer at a certain temperature because I can feel the slightest deviation. When you are in a hospital, you literally freeze to death there.  They also do other things that they think will ‘help’ people and it only ends up hurting me.   So… I just try to stay at home as much as possible because no place is as good as home!  At least I have my family at home and my space!

IMG_6410I was fortunate to be able to spend my mom’s 60th birthday at home with her.  I was really happy that I was able to do that.  She really had a great birthday even though I would have loved to make it better for her.  I got her a really nice cake and they enjoyed it.  However, I never got to have my piece because I put my piece aside for the next day and I accidentally left it out of the freezer when I was putting something away the following morning.  By the time I realized that it was out of the freezer, it was a little too late because it had already melted.  At least they got to have the yummy cake.  I guess I will just have to wait until next time!

However, now that her birthday has passed, my dad’s 60th birthday is now quickly approaching, as it is exactly one month after my mom’s.  My dad had broken his phone and since he had to get a new one, he finally joined the technological age. I chipped in as his birthday present and he finally graduated from having a ‘flip’ phone to a iPhone.  It wasn’t the iPhone 5, but it was the 4S.  He didn’t need to have top-of-the-line because for what he needed it for, it was good enough.  You should see him with it… it is so funny.  He is trying to figure it out!  He loves it though! He thinks he will never figure it out, but he is learning.  He likes the apps.  He loves especially to take his pulse on his phone and the magnify glass app.  He is so funny.  I am so glad though that I was able to get him something that he truly enjoys and loves because it isn’t often that I get to see him have a smile on his face.  He rarely ever gets himself anything and to see him actually get something new and then to be so ‘happy’ over it… it really was great to see.

1157405_10100865355322980_343718912_nSpeaking of cell phones, the case for my phone finally arrived.  I had this case made especially for me and I have been waiting on pins and needles for it.  It was coming from California and I have never been so on edge before waiting for something. I think in my opinion (of course I am bias) that it is gorgeous.  I am just hoping that the case holds up instead of falling apart because I am so afraid that the rhinestones or pearls will fall off.  But this person that made the case is supposed to have really good reviews, so I am hoping that it won’t be the case.  This case looks good enough to eat!!

I really have to get better and better soon because all these medications that I am on are not good for me.  I have found out that the methadone and ketamine that I am on actually interact.  However, they still have me on it because there really isn’t any other choice.  However, I found out that because methadone and ketamine are both NMDA antagonists, it is dangerous because they are metabolized on the same pathway.  Significant interactions can occur with other medications that are metabolized by the same pathway and in fact, cardiac arrhythmia has been described with high-dose methadone due to QT-interval prolongation. I already suffer from prolong QTs, so I am already at risk.  I also don’t want to be on medications forever because even though they may ‘help’ now… nothing comes without paying a price.  I found out that even though ketamine might be so helpful to me now, I don’t want to pay the price for it later on because I found out that It was shown that ketamine causes neuronal cell death in developing rodents and nonhuman primates. Based on the absence of human toxicology studies, mixed reports of animal toxicology studies, and anecdotal reports of neurological injury, ketamine should be reserved for terminal patients who fail to derive pain relief from more conventional analgesics.”  I don’t want to have my brain fried after all this because when I get better I still want to become that doctor that I want to be.  I want to be able to help others so that they don’t suffer the same fate that I had to suffer.  So I really have to preserve my brain.

Well… I guess that appears to be all for tonight.  I am really not feeling well and I really need to rest.  I’ve been trying to read as much as possible even though it is really hard to concentrate and retain what I am reading because I not only want to preserve whatever brainpower I have, but I am trying to do whatever I can to enjoy myself and bring some ‘fun’ into my life.  I am currently reading J.K. Rowling’s new book that she wrote under a different name called “The Cuckoo’s Calling!”  It is pretty good, but it definitely isn’t like the HARRY POTTER books that she wrote.  Nothing can compare to those! They were the best!  I miss them!!

IMG_5843I recently also saw in a magazine a picture of a person walking past a billboard and it had all these famous designer names on it.  But guess what?  It has my name on it too.  I don’t know why, but I thought it was great especially considering how rare and unique my name is.  So I ended up taking a picture of the picture in the magazine because I thought it was the coolest thing in the world. I know… I am corny.

Well… thanks again for listening.  Talk to you when I have more info.  Please continue to pray for me and please continue to spread awareness of my website.  Please continue to bring attention to my situation because I so desperately need funds for treatment.  I hate to be a crier and to constantly plead and to sound like a broken record, but it is just that I am so desperate.  I know how important these treatments are to saving my life and I know how impossible they are to have without the help of others.  I know that I desperately need these expensive treatments and there is no way that I can get them on our own.  So I hope you can understand.images-1



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August 9, 2013


Since I went to the doctor today about my foot and have news about it, I really wanted to share what is happening.  In addition, I have so much other stuff happening that I don’t know if I am coming or going.  To make matters worse… it is my mom’s birthday today and I even feel bad about that too.  It is like a real disaster zone in my life and it is like the titanic finally hit the glacier and is going down. I am sinking faster than ever and to be honest…. I don’t know if I am going to be able to survive this.  The boat is filling up fast with water and before long I will be submerged with water and under the ocean.  I keep getting hit with so many things and I just can’t take it anymore. There is only so much a body can take and I think I have reached my maximum. You know?

To begin with, I had an appointment this morning for my foot because I had the soup can fall on it and as a result, I thought it ended up breaking my toe.  I had developed a huge blister on my foot as well, which looked like a ‘water’ blister, but when you carefully look at it even more, you can clearly see that it isn’t filled with water.  When I spoke with the doctor, the doctor was fearful that it was a certain blister called a “fracture” blister and therefore, she wanted to see me as soon as possible.  Fracture blisters are a relatively uncommon complication of fractures.  It is caused because when the bone breaks, it ends up bleeding and therefore, tense vesicles or bullae that arise on markedly swollen skin directly overlying a fracture.  Fracture blisters are in and of themselves painless much like a friction blister or blister of a second-degree burn.   The doctor especially wanted to see me because due to me having my neurological condition, nothing presents itself like it really should and in addition, we are always fearful that amputation is always a possibility because of the severe reduction of circulation due to the disease.

The doctor was shocked with how bad I was with my disease.  I was fortunate that she actually was somewhat familiar with my illness because not many doctors ever are familiar and have come into contact with my illness in the past.  However, she said that when she was a student, she said that one of her first patients actually suffered from a similar case, but it was definitely not nearly as severe as me.  Just as all the other doctors have said that have treated me and have seen me and heard about me, they have all stated that I am the worse case that they have ever seen or heard about in the world.  They all say that I am the worse that has ever existed and that is why they don’t know what to do.  They all acknowledge how horrendous this disease is and how unbearable it is.  Some doctors have claimed that if “Hell was a medical condition, it would be known as my illness.”  It is the worst thing that you can ever imagine and I am not just saying it because I am going through it or because I am feeling ‘sorry’ for myself.

With all that has happened with me in the past and is occurring with me now, as well as with the nature of the disease itself, all the doctors have stated, “It is a miracle that I am still alive.”  They credit my family for being a great support mechanism and for the main reason why I am here today.  I definitely how the best family and if it wasn’t for them… especially my dad… I wouldn’t be here.  You know?  But I have done so much to them and they have given up so much of their lives for me that I feel so bad for everything that has happened and the way it has all turned out.  They definitely don’t deserve all this and I really wish that I could make it up to them and that it would be better for them.  I definitely wish I could make their lives better because they are such amazing people and definitely deserve to have better lives.  But unfortunately, not only has this disease robbed me of my entire life, but this disease has robbed my family of their lives too.  We don’t do anything anymore except sit in the house and look at the 4 walls; we don’t go out and have fun, we don’t go on vacation, and we don’t even go out to eat. My family really has given up everything because not only can’t I do many things because of the physical incapacities and because I medically can’t do it, but the financial problems are really affecting us mega time.

Anyway… when I went to the doctor, I couldn’t find a nicer doctor.  She was really amazing.  She was really touched by my story and in fact, she actually met me first thing this morning to see me.  She didn’t even have an appointment, but she was willing to meet me as an “Emergency” to see me before she even began her office hours because she knew how important this appointment was and how much I really couldn’t come in the afternoon either because as the day progresses, my illness gets worse and worse and I have difficulty walking.  But she was willing to actually get there earlier and take me on just so she can ‘help’ me.  It was really one of the nicest things people can do because she went out of her way for me.  I really appreciated it because I know it wasn’t easy for her especially since she has a child and had to put him on the camp bus and everything.  In addition, when she didn’t just meet with me and just see me and kick me out.  Instead, she spends so much time with me, as we were there for about 1 1/2 hours.  She really was a tremendous help!

IMG_6479It turns out that I did in fact break my toe and she does believe that the blister is indeed a fracture blister.  However, due to the nature of my illness, there isn’t really much that she can do because she can’t immobilize anything or do anything really to the foot because of my illness.  But at least we know exactly what we are dealing with.  We took an x-ray to confirm everything, but I am still waiting to hear 100% that it is confirmed, but she basically said it was 99.9% already confirmed.  I also asked her what are the chances of something happening and having to have it amputated and such, but she said that ‘All bets are off!’ No one knows what is going to happen with the foot, but we know that having this is not a good sign.  We know that especially with my illness how difficult it will be for me to heal and now with this severe fracture and severe blister and such… it doesn’t look too good. I am so very scared because I know how bad my circulation is and I am so scared of losing my foot.  The foot is black and when I looked at the foot tonight, the blister is blacker than ever.  I am so scared that something is happening.  The doctor told me that under no circumstances should I ‘pop’ the blister.  I tried contacting the doctor tonight to alert her as to what is occurring, but unfortunately her mailbox is already all full and I can’t leave her a message.  I am going to try her again first thing in the morning, but I am extremely nervous now and freaking out.  In addition, it is killing me in pain and itching me. I am so scared.

Since I was there, I also had her look at my other foot since I was having difficulty walking on my right foot as well.  Since I have the illness in my entire body, but it is worse in my left leg and foot, I cannot put any pressure on the left foot or wear a sock or shoe on it.  Therefore, it is not such a major thing that the doctor couldn’t do anything to immobilize the foot or anything because of the break because it isn’t like I put pressure or walk on the foot anyway.  However, I do put all pressure and use my right foot like crazy.  I depend on it, as it is the leg that I walk on and if I didn’t have it, I would honestly have not one foot to walk on.  So it is really important not to lose function of that foot.  So even though I have been suffering in horrendous pain and it has really been unbearable to walk, I have been enduring the pain and trying as much as I could to walk on it as much as possible because it was my only choice.  But let me tell you how difficult it has been.

The pain that I have in my right foot is so unbearable and it was preventing me from walking.  So when I showed the doctor, it was discovered that my entire right foot is especially inflamed!  The doctor also saw that I had some corns on my foot as well, and I even had 2 seed corns.  Whereas a corn generally is usually hard and is a small patch of thickened, dead skin with a small plug of skin in the center, a seed corn are clusters of tiny corns that are very tender especially if they are on a weight-bearing part of the foot.  It is like walking on pebbles.  Seed corns are believed to occur because of blocked sweat ducts.  With the autonomic dysfunction that I have, there is no wonder that I developed seed corns because I lost the ability to sweat.  These seed corns were also part of the reason why my foot was so inflamed.  So I was really in bad shape because now not only was I suffering from pain because of my illnesses, but I had severe pain because of these seed calluses, which really had to be removed.    However, it isn’t so easy in me because any touching is so severe for me and even the most innocuous touch is like someone sticking a knife through me.  In addition, even the slightest touch or trauma has the potential of spreading my disease and it is already spreading like a wildflower.

That being said, the doctor was really in a predicament because if I was a regular person, I would have already been given injections already to take out the fluid, injections to ease the pain, etc.  However, due to my illness and how anything ‘traumatic’ or invasive can potentially spread my illness, the doctor didn’t want to take the chance and spread the illness or make it worse since I am already really suffering and it is spreading like crazy.  The doctor did say that she wanted to remove the corns and seeds corns though because that was contributing to the pain.  However, it wasn’t going to be a pleasant experience because it entailed digging it out and cutting it out, which would be very painful to me especially since I am so hypersensitive due to my neurological illness.  However, I really didn’t have any choice because I was having these issues and was having a huge problem of being unable to walk, bear pressure, and have pain because of them. Something definitely needed to be done because without it, I would continue to suffer and we all know how desperately I can’t lose function of that foot.  After all, I depend on that foot totally because I can’t wear a sock or shoe on the other foot or even walk at all on it either.  So, I really had no other choice but to have her work on it.  My dad was “Mr. Macho” because he was like “Just Do It!”  It was easy for him to say because it wasn’t his foot.  He is always so quick for a doctor to do something because it isn’t his body that it is happening to.  I know that he only means well because he doesn’t want anything happening to me, but he is always fast to jump into action when he isn’t the one being touched and such.

Well… I did endure the procedure and she did remove as much of the seed corns as possible.  She couldn’t remove all of it because it was just way too much there and too much for me to bear.  She would really have to do ‘surgery’ in order to remove the rest, which is something she couldn’t do with the amount of pain that I was in or when I was conscious.  However, she was such an excellent doctor and was so caring and considerate that she said that if I ever was hospitalized or if I ever was under anesthesia in a local hospital, she would come into the operating room and perform these procedures while I am under anesthesia so that it can be properly done and it can disappear like it should.  I really appreciated her saying that because what doctor would be willing to go out of her way and go into an operating room when it isn’t even her procedure that she is operating on just to do something?  You know?  She really is something.  She was quite aware that we were leaving for HOPKINS and she said that if it was local, she would be the first one there when I went for the surgeries to do it during that time.  She really was amazing.  She was by far one of the nicest doctors that I have ever met and the most helpful.

Since I had so many problems and I am in such bad shape, the doctor also prescribed me a ketamine cream.  I am in so much pain and in such bad condition that the doctor gave me the ketamine as a way to help everything.  However, the only horrible part is that I can’t get the ketamine cream in a traditional pharmacy.  Just like the other ketamine that I take, I need to get it at a special ‘compound’ pharmacy and therefore, it would take about 6-8 hours to make.  However, the pharmacy that is making the ketamine cream is supposed to be able to deliver it to my house right after it is made and within 24 hours, which is great because it will save me a trip to the pharmacy and will mean that I will definitely get it tomorrow too.  However, I am in so much pain and suffering now that I wish I have it as of now. In addition, I can’t believe how much this ketamine cream actually is.  I am only hoping that it works because even my dad can’t get over how much the ketamine cream actually costs.  Just for this cream, it costs about $2,000.  Can you imagine a little cream costing that much? It better work after all that!!  I can’t believe how I am so loaded up on ketamine.  I take ketamine infusions and go for ketamine comas, I take ketamine daily at home, and now I have ketamine creams.  I feel like such a ‘druggie’ because of all the drugs that I take… ketamine, morphine, methadone, dilaudid, nucynta, etc.  It just doesn’t stop.  Gosh… if I ever had a drug test… I would fail it immediately!

In addition, the doctor also has hyperbaric chambers.  She really thinks that I need this method of action to help me recover from all this, as well as she is hoping that it might help me with my overall illness too.  She is hoping that it could at least help restore the oxygen and restore the circulation to my tissues because like I said before… my disease has really compromised that and as a result, my limbs and organs are being depleted of circulation and oxygen.  My left leg especially turns all black and even remains black even when elevated (instead of resuming normal coloration because it is raised).  The doctors are even fearful that so much damage has been already done because the tissues have been deprived of oxygen for so long that even if I did get better, I would still end up having to have amputations. But hopefully with the hyperbaric oxygen, it can all be avoided.

It is also believed that the hyperbaric oxygen therapy can help promote healing in the body by increasing its exposure to oxygen. Bringing more oxygen to the brain and tissues can help it to recover from damage and function more efficiently. It has been shown to be very promising for various conditions such as Autism, CP, Stroke, MS, Mitochondrial Disease, Chronic Fatigue, Lyme Disease and other neurological conditions. Therefore, it is hoped that it can help me too.  After all… when we normally breathe oxygen, it is at a concentration of 21%.  Yet, a patient in a hyperbaric oxygen chamber breathes 100% pure oxygen under pressure. This pressure allows for oxygen to diffuse into the cerebrospinal fluid and brain tissues at concentrations far beyond what can be achieved under normal atmospheric conditions. In other words, oxygen concentrations are increased to the point above what the blood could normally deliver to the brain, and the ‘recoverable brain’ cells are jump started back to life!

The problem is that it is incredibly expensive. I have thought about having this treatment in the past because even though I have tried everything else under the sun such as sympathetic blocks, machines implanted, sympathetomies, therapy, medications, ketamine comas, etc., I have not yet tried this simple therapy of Hyperbaric Oxygen.  However, since there is no real ‘promise’ that it will work, I really didn’t want to invest in it because of how expensive it was and how it was more important to allocate our funds elsewhere since we really didn’t even have enough money to cover even the needed treatment that I was currently receiving.  We explained all this to the doctor and this doctor is amazing because she is trying to find a way so that I will be able to get this opportunity as well as other ways of getting help so I can receive the life saving treatment that I need.  

SmileyYellingI really need treatment desperately because I am deteriorating so much and so fast.  I really don’t have time on my side and unless something is done fast, I don’t know what is going to happen.  However, my family doesn’t have the money anymore to give me the treatments that I need and unless I get the help from others, I will not be able to get them.  They are just all so expensive and without the help of others, there is just to way I will be able to get the lifesaving treatment that I need.  As I have said in the past, I have tried numerous ways to raise money, but we all know that the best way to raise awareness to my situation and raise money would be through the media.  However, no matter how many times I have written to all the different kinds of the media such as all the different talk shows, the news programs, etc., I have never really been successful because in this world “It isn’t what you know… it is who you know” and unfortunately I don’t really know anyone with connections.  So unfortunately I haven’t been able to receive the ‘help’ that I really need and I have had to sit back watch other people on TV get the awareness and attention that I so desperately need.  However, I am so lucky that I went to this new doctor because she said that she is going to try to help me out in any way possible.

This doctor is really amazing.  She can’t make any promises, but she definitely is going to try to help me out in any way that she can.  She knows that the trick to raising awareness would be awareness through the media and therefore, she does know people and doctors in that area.  In fact, one of her contacts just happened to be one of the doctors that was feature on the “TODAY SHOW” the other day.  I am really hoping and praying that she will have some success in this because it would be amazing if this all would work out.  She said that my story is really ‘a great story’ and ‘definitely a story you don’t hear everyday!’  She is also going to try to get me treatment with the hyperbaric treatment at gratis so that I don’t have to pay for anything since I really can’t afford it.  I am only praying that all this happens because I really need treatment so badly and like I said before… I can’t receive the lifesaving treatment that I so desperately need without the help of others because we can no longer afford it.  If only the media would feature me… then my story would get out big time and perhaps I can get the attention that I need to bring in some really big donations.  In the meantime, I really hope that people are spreading the word of my website and alerting people of my condition because it is so very important and I am so running out of time.  I am also hoping that she will have luck with getting the owner of the hyperbaric treatment to do the treatment gratis because even though it isn’t 100% proven to work, it is worth a shot.  I am really going downhill fast and unless something works soon, I will really not make it much longer.  Like I said before, I really have tried so many things in the past that has failed that we are at bottom of bucket.  This is something that can potentially help and something I never tried.  So I am really keeping my fingers crossed that all this will happen and happen soon.  After all, I am so young and really don’t want to die.  I have too much to live for.

In the meantime though, I have been doing terrible.  My disease is really getting worse and I am suffering so much.  Due to the paralysis of GI tract, I cannot move ‘air’ or ‘gas’ through and as a result, I am becoming so distended and bloating like crazy.  I keep walking around unable to breathe because I am so bloated and distended.  I feel like I am 9 months pregnant and ready to give birth.  I keep saying how I need someone to ‘pop’ me, but of course that isn’t going to happen.  Something really needs to be done because not only am I suffering so much in in pain because of all this and so uncomfortable, but it is shutting down my organs too because all this pressure of the air and gas is putting added pressure on my organs and shutting them down in addition to everything else.  It is also setting off my whole autonomic dysfunction as well as exacerbating my illness too.  It is like a never-ending cycle because one thing just causes another.  It is just nonstop.

My dad keeps saying to ‘hang in there.  Hopkins will be here in no time!”  But in reality it is still 1 1/2 weeks away.  We are planning and hopefully leaving on Sunday, August 18th.  However, we still need lots of financial help in order for this to happen. In addition, with all the complications that always happen to me, who knows if something won’t happen that will end up delaying the surgeries? Even though we are planning on going and hoping to go… I don’t count on it until my body is on the plane and I am physically there.

Well… I guess that pretty much sums everything up about all the news that is occurring.  I guess you can say that there is never a dull moment in my life.  I just wanted to share the big news of what is happening so that it doesn’t all build up or anything.

Thanks again for taking the time to read my blog and for supporting me.  I really have been having an extremely difficult time lately (more so than ever) and I can’t tell you how much knowing having your support means to me.  Just knowing that I have your backing is really helping me get over the bumps in the road.  I really can’t thank you enough.  Please continue all your prayers because without them, I would not here today.  Please also continue spreading awareness of my website and alerting people of my illness because not only do I need funds so that I can receive the very lifesaving treatment that I so desperately need, but I want to leave an everlasting mark in the world and therefore, I want people to become familiar and knowledgeable with my illness.  I want people to learn about an illness that is so unknown as well as to realize that they should appreciate life and never take life or anything that it has to offer for granted because in an instant it can take anything (even the most simplest thing such as eating) away.  I also want to show others that even when the cards are down and you are dealt with so many problems, it is possible to overcome and win!  You should never give up because even though you might be ‘down,’ you are definitely not ‘out!’  I might have lost a couple of battles, but I definitely haven’t lost the war.  I am determined to overcome this illness so that I can become the doctor that I so desperately want to become so that I can help others in this world.



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August 8, 2013


I know I just recently blogged the other night, but I already have more news to share.  So instead of bottling everything up, I really wanted to share it all and in this way it wouldn’t also turn into a HUGE blog too.  I am also really nervous about all that is going on, so I figured that this might serve as an outlet to share my feelings and feel better.

To begin with, I have been having severe pain in my knee and thigh, especially when getting up and down.  I couldn’t walk, or even extend or flex the knee. I was getting sharp, catching sensation with range of motion of the knee, especially on first arising.  It was getting to the point that I needed help just getting up and down off a chair because of the excruciating pain.  Being so hypersensitive and in so much pain as it is because of my illness, this was extremely magnified and affecting me so much more than a regular person. It was also exacerbating my overall disease and autonomic dysfunction.

I went to the Orthopedist the other day because I couldn’t tolerate the pain anymore and the orthopedist wasn’t sure exactly what the cause was.  He did discover that I had a saclike bubble pouch above my knee, which he said was probably a nerve exposed.  He did however give me a cortisone shot to try to help me, but he did say that “all bets were off with me” because my disease really complicates matters and you never know what to expect with it.  In addition, he also alerted me that not only could the injection not work, but it could also make things worse.  However, I thought that I really had nothing to lose because I was in such excruciating pain and if I didn’t do it, I would always wonder if it would have worked or not and therefore, I went for the injection.  However, not only did the injection not work and exacerbated my illness like the doctor said might be a possibility because any trauma to my body (and a needlestick is definitely traumatic) can cause exacerbation of my illness, but I ended up having a bad reaction as well.  My blood pressure ended up dropping and my autonomic dysfunction was stirred up.  As a result, the doctor made me lie down for a bit.

Anyway, since nothing was solved when I went to this doctor, I went to another doctor to seek his the expertise and it was discovered that I was getting the pain that I was getting because of the severe osteoarthritis that I had, as well as having tendonitis with the Vastus Medialis and Suprapatellar Bursitis. I can’t believe that the orthopedist missed this.  Not only do I have severe osteoarthritis in the knee, but also trigger points in the Vastus Medialis can definitely refer pain into the knee.  After all, the Vastus Medialis muscle is often a major factor because when it’s weak it can’t hold the patella (knee cap) in its proper alignment. It is one of the four quad muscles in the thigh that are the primary extensors of the lower extremity at the knee.

I can’t believe that they misdiagnosed suffering from Suprapatellar bursitis because I was having pain in the anterior knee above the patella that was radiating superiorly into the distal anterior thigh.  I couldn’t walk or go extend or flex or the leg. I was getting sharp, catching sensation with range of motion of the knee, especially on first arising.  I can’t believe how you figured it out in a second and you didn’t even see me. You are simply amazing.  These doctors are something else.  They just find it so easy to blame it on something else… especially my illness.  They don’t realize that the supra patellar bursa may also concurrently become inflamed with dysfunction of the quadriceps tend, and anything that alters the normal biomechanics of he knee can result in inflammation of the supra patellar bursa (so it is no wonder that problems with this muscle is causing the bursa to occur).  O yeah… they also think that I possibly can have something wrong with the Obturator Nerve as well because of the pain I am experiencing and how I always feel pain in my femoral artery and feel like there is a clot there as well.  Never a dull moment… you should know that by now!

So now that this issue has been discovered, the next problem is that we have to find a way of treating it.  I am planning on having a trigger point injection when I go for the next ketamine coma on Tuesday because I really can’t tolerate anything touching my left leg whatsoever unless I am completely knocked out.  I am really hoping that this will work because I am just in so much pain but I am so happy that they finally found out what is wrong.

I am also going to the doctor tomorrow because the doctors are extremely worried about my left foot and when the soup can fell on it. Even though it is black, they are not sure how much it is ‘black’ because of my illness and how much is due to the actual trauma and something else causing it.  Not only is it discolored, but also there is a blister-like look to the foot (but it doesn’t appear to be a ‘water’ blister).  We aren’t sure how much of what is occurring such as what is is related to my disease, how much is bruised, and how much there is something else going on.

The doctors are always afraid that with my disease and poor circulation that I am going to have my leg amputated because they said that I could easily get an infection in that leg and foot due to the poor circulation and everything.  The doctors have even stated that if I got better that they might still have to ‘amputate’ because they fear that due to all this time of having the foot and leg deprived of oxygen, a lot of the tissue has already died. So they are especially worried about this foot and want to see what is going on before it is too late.

In addition, due to my illness, nothing ever presents itself like it should. After speaking to the doctor, they are very worried that it could be a fracture blister.  I don’t know what they are going to be able to do or anything because of my illness, and that is one of the reasons I didn’t go to the doctor initially when it happened (they can’t really do anything for broken toes in general and they can’t immobilize the toe or put a bandage on it either because of my illness… so all bets are off as to what is going to happen).  But the doctor is extremely concerned with all that is happening with the foot and meeting me first thing in the morning to see what is going on.

Fracture blisters are very uncommon and are a big complication.  It is a huge dilemma for doctors in general, but with someone in my condition, it is even worse.  These blisters are thought to be caused by shearing forces applied at the time of injury.  I am so worried about it because they mentioned that surgery might be needed and like I said this is on my ‘worst’ foot and I don’t heal regularly.  I am so scared that this is going to lead into something worse and may lead to having my leg amputated.  I am so worried that this is going to exacerbate my illness even more because my illness spreads like a wildflower and any sense of trauma easily spreads it.

To make it worse, I also have an appointment tomorrow with the surgeon for the osteonecrosis.  I wonder what he is going to do.  I hope that I am not going to have to have more surgery to remove more dead bone.  I do know that since the last appointment with the surgeon, more dead bone has broken off and fallen off on its own.  I just hope I am not going to have to endure too much pain tomorrow.

The bone doctor has also stopped the injections for my bones for awhile. I have been getting a reaction every time I have taken the injections and the doctor doesn’t want me to take them anymore until I see him.  I had a reaction when I first started taking the injections in the hospital, but the doctor was hoping that within time that the reactions would subside because I desperately needed these injections because my bones are deteriorating so fast and they are so thin already.  I am so prone to a life-threatening fracture and can’t afford to have one.  I can’t get the usual potent infusions that I used to get, so these injections were the next best things.

However, every time I was taking the injections, I was not only getting swollen and itchy, but I was getting a ‘rush’ and palpitations in my chest.  When I spoke to the doctor, he wanted me now to stop it immediately and he wants to see me when I take the next dose so that he can carefully monitor me when I do take it.  He thinks that the injection is dropping my heart rate and blood pressure, so he wants to put me on all the monitors including taking an EKG the next time I take it.  So since he is going on vacation next week and I am also leaving for HOPKINS, we are going to stop the injections until I get back from HOPKINS because I can’t see him beforehand.  He must be really nervous because when I told him that I would still take it like every other day or something because I knew how important these injections are and I also didn’t want to lose any of the bone that the infusions did built (since this was the first time since the very first infusion that I had a significant growth of bone and I didn’t want to lose it according to my bone scan), but he said, “Under no circumstances am I to take it!”

The doctor also wants me to get a pulse ox machine and blood pressure machine for my house because he thinks that as my body continues to deteriorate and shut down, I am having issues with my heart… especially when I take injections.  I never really had problems with injections in the past, but lately whenever I have an injection, I have been having a reaction.  I keep getting a ‘rush’ and palpitations whenever I take an injection. It just feels like my heart is fluttery and someone is sitting on my chest.  I got it when I went to the dentist and he gave me an injection of novocaine.  But I thought it was just an isolated event.  However, it again happened when I had the injection in my knee the other day.  It then continues to happen when I take these injections.  So the doctor is thinking that it is my autonomic dysfunction acting up whenever I take an injection and it is just one more way that my body is just shutting down the more my body deteriorates.  My organs are really just suffering so much and I don’t know honestly how much more I can take!!  I am really getting scared!!

I really am scared that I am not going to be able to make it much longer.  I am trying to hang on as long as possible, but it is getting harder and harder.  I am trying to keep my head above water, but I am drowning faster than ever.  My dad keeps saying to me to “hang in there” and “Hopkins is going to make me all better” as a way of trying to keep me going.  He even keeps telling me constantly how important I am to the family and how they can’t live without me because there will be no one to take care of them.  He said that no one will take their medications because I won’t be here to give it to them (I am like the doctor in the family because I give them all their meds and such).    Sometimes I wonder if he thinks that by telling me this stuff if he thinks it will prevent something from happening.   I am so scared that something is going to happen.  I know I am running out of time and I know how much I need treatment.  I really am hoping that HOPKINS will work out for the better, but I also am aware how much I need in addition to just the treatment at HOPKINS.  I also know that without the help of others… none of this will be possible because all my treatments are so incredibly expensive and my family can no longer afford it.  I am just praying and hoping that something will come about and there will be a way of finding the funds so that I can receive the necessary treatment I need to save my life.  I really don’t want to die because I have so much to live for.  I have been robbed of so much of my life and I haven’t yet lived my life.  I have so many dreams and aspirations and I really want to leave my mark in the world.  I want to travel, get married, have kids, be a doctor, etc.  I just hope that I get all those opportunities.

994258_10100847419955600_630402847_nI also wanted to share some really cool news about my cat Missy.  Not only is she my companion and best friend and babysitter, but she is such a smart cat as well.  I never met a cat like her.  She knows exactly when I am sicker than usual, as she won’t leave my side.  Even when I am having an exacerbation or need help, she always finds a way of notifying my parents.  She really is something else.  I spend countless nights awake with her since I can’t sleep.   She follows me everywhere just to make sure that I am ok. Even if I have to go to the bathroom, she will be my ‘tail’ and follow me there and then follow me back to bed. She really is my best friend.

Missy loves being with me and getting all my attention.  Not only will she never leave my side, but she also spends the entire night with me.  We do everything together.  IF anything would ever happen to that cat, I would NEVER recover.  She is my life!!  We watch television together and she even loves to watch me on the computer.  In fact, when I am typing on the computer, she is always by my side watching.  There are even so many times that she even tries to go on the keyboard and type her own messages.  She really is an amazing cat.

Missy is one of the smartest cats I know.  I actually can’t believe what I am going to tell you next and my dad said he would never believe it either if it wasn’t that he actually experienced it.  Missy actually ‘talks’ to me.  She is very extremely vocal.  Missy always wants to make sure that I am ok and if I appear that I am ‘resting’ too long, she will start ‘talking’ and such to alert me to get up and make sure nothing happened to me.  It isn’t even like she is ‘meowing.’  It is totally a different kind of ‘meow.’  It is more literally like she is talking.  Even when she first comes into my room to me, she has to announce her presence by ‘talking’ to me.  She really is something.  My dad says that she is ‘learning English!’ I never thought that Missy or any cat in that matter would be capable of doing something like this.  Missy is just one amazing cat.  I am so lucky to have her.  She is just unbelievable.

I am going to miss Missy so much when I go to HOPKINS.  Whenever I go traveling to doctors and to the hospital, I miss her so very much.  She is my ‘life’ and I don’t know what I would do if I didn’t have her.

44650_10100857855482720_2135670298_nI also have a great dog too.  He is so funny and keeps me company too.  I just bought him a new squeaky toy because he loves to squeak things.  I know he loves balls, so I bought him this toy because not only is it a ball and squeaks, but it is shaped in a bubblegum person.  He loves playing with it because not only does it bounce like a ball, but it bounces in all different unexpected directions too because it has arms and legs. We had a great time playing with it today.  I only wonder how long it is going to last before he kills it.  Max has a habit of destroying things especially when he wants to play with something and you don’t pay attention to him.  He always has to be the center of attention!

balloon_picture_2_jpgWell, tomorrow is my mom’s 60th birthday.  I am so lucky that I am here to celebrate it.  I really thought that I was going to be at the hosptial, but I was able to be here to celebrate it.  I really wish I could have made it one big bash for her, but unfortunately due to financial constraints and because I really can’t do things physically… I really can’t do much. My mom has given up so much for me and she definitely deserves the BEST birthday possible.  I only wish I could give her all of her wishes because she definitely doesn’t deserve the life she is living now.  She is at the point in her life where she should be enjoying her life, relaxing, and living her life up.  But instead she is working harder than ever, can’t go out to eat, can’t go on vacation, can’t buy things for herself, can’t fix up the house like she wants, etc.  I feel so bad for all that I have done for her.  I am so thankful and appreciative for all that my mom has done for me and given up, but I really wish I could change things for her.  I wish that I could make things better for her.  I would do anything to make my mom’s life better.  I am so thankful for her.  I can’t wait to get better so not only will my life get better, but also will my family’s life.  Not only has this disease robbed me of my life, but my parents have been robbed of their lives as well.  We haven’t done anything in years including going on vacation, going out to do anything fun, or even going on vacation. I can’t wait for the day when this can happen!!

In the meantime, I really tried to make my mom’s birthday as special as possible.  I did buy her a plant that is supposed to bloom every year, but I definitely wish I could buy her more.  Even though I can’t take her out to eat because of the finances and because I really can’t eat out, I am making her a whole big dinner.  I am also planning on getting her an ice-cream cake for her birthday as well.  I have some other things planned as well, but I don’t want to share it right now in case my mom looks at this before her birthday. I want her to be surprised.  But I will tell you all about it next.

Well… I guess that appears to be all.  I think I told you everything.  Thanks again for all your continued support and encouragement. I will let you know all that happens!



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August 7, 2013


It is getting closer to leaving for HOPKINS and things aren’t going too well.  So I just wanted to blog a little because I am really having a hard time coming to grips with this arising issue.  I never once ever thought that I was going to ever have to deal with something like this. I also wanted to write so that I could keep you abreast on latest news on what is happening with me.  SO many things is occurring in my life right now and it feels like I am the titanic ready to go down.

First of all, I guess I should start with the issue that I am totally having a difficult time trying to get a handle of and dealing with.  Unfortunately, my health is not the greatest and I am rapidly deteriorating.  That is no secret and we all know that.  We all know how much I really need this very expensive treatment as well, but unfortunately after all these years of paying for my treatments, my family can no longer afford it without the help of others.  It is really sad that my life is really hanging in the balance because we can’t afford the treatment needed to save it.  That is why I have been so desperate to raise funds and such because I am really deteriorating and if something isn’t done soon, I will soon die.  But unfortunately, my efforts of raising funds despite all that I have done… blogging, writing to the media, hanging posters, trying to spread the word through Facebook, etc. have all basically failed.  Even though I did manage to raise some money, it is nowhere near the amount of money that I need for treatment and it was done over such a long period of time that we are in such a deeper hole than ever that unless we really get some help soon, we will no longer be able to afford treatment for me at all despite making all the cuts that we have made already.

I am in so much pain and suffering… not only physical pain but emotional pain as well!! Not only has this disease taken a physical toll on me, but it has taken an emotional toll on me as well.  I am so tired… tired of the physical pain and suffering, as well as the emotional.  No matter how many cuts we have made in our lives and even in my treatments, it is never enough to keep our heads above water and to even allow me to receive the necessary treatment that I need to save my life.  We are sinking faster than ever and without the help of others the Titanic is going to be soon completely underwater and sunk to the bottom… never to come back and able to revive itself.  I really can’t hold on much longer and I desperately need treatment.  I am trying to hold on as long as I can, but the fact is that without treatment… I will soon die.  Sorry to be so blunt, but that is the truth.

Anyway, I just just learned that despite all that my family has given up in their lives, they are now going to give up their two last precious items.  My parents have already given up all materialistic items already, as well as stopped buying things a while ago.  They have even basically given up on enjoying their own lives and living out their own lives because we haven’t been on vacation in years, we don’t even go out to eat, we don’t do anything for fun such as go to the movies or the beach or anything because of finances, etc.  It is definitely not a way for my family to live, but they have given up everything because all money has gone to my treatments and we really have nothing left to do other things.  It is a shame how this disease has not only robbed me of my very life including walking, eating, friends, social life, etc. but it has taken the lives of my family as well.

Since you can’t get blood from a stone and I am really suffering and deteriorating, my parents are trying to do whatever they can to save my life.  I really can’t blame them for it because I am their daughter, but I really wish they wouldn’t give up their lives for me.  I feel like such a burden to my family and they are such terrific people who have done so much for me in the past that they don’t deserve all that is happening to them… especially now!!  My parents are at a point in their lives where they should be enjoying themselves.  They are just about 60 years old and they should be having fun.  Yet, they are working harder than ever, and they don’t do anything for themselves.  We remain all the time in the house, don’t do anything for fun, don’t go out, and we can’t even fix up the house like my mom would like because of the lack of finances.  I only wish things were different.

996530_10100851432224980_698619962_nI am really upset though because I just learned that despite all the cuts that my family has made in the past, they are about to give up the last of what they have because I can’t receive the donations and funds that I need in order to have the lifesaving treatment.  We have been hoping that I would be able to raise money though donations, but even though I have raised some, it is not nearly enough.  My treatment is just so incredibly expensive, as I require numerous medications, surgeries, and procedures that are not even all in the local area.  We have to travel across the United States including places like John Hopkins in Maryland and New York.

1044884_10100841311966060_661690592_nSince I will die without these treatments, my parents are now saying that they are going to sell my dad’s watch and my mom’s engagement ring.  These are the last 2 items that my parents have left. They cherish these items for so long and love them so much, and it absolutely breaks my heart to know that it has come down to this. It just shows the true love that my parents have for me, as they will do anything just to try to get me well. But, I vow never to let that happen and do that to them! My family has basically given up everything that they could and these items are the only things they have left.

I am really scared because we are at bottom of bucket and really need your help. I am really hoping that someone will please help us so that I can get the treatment that I need to save my life. I am quickly deteriorating from a life threatening disease and desperately need help because we cannot afford the necessary treatments on our own anymore. I don’t wanna die!!  So I am hoping that I can find another way out of this so that it won’t come down to them selling these last 2 precious items.  I already told them “under no circumstances are they to sell it!”  It just kills me to know that they are even considering it.  If I find out that this has to happen, I don’t know what is going to happen.  I already taken enough from them, I don’t want to take this from them too.  So I am just praying and hoping that something will happen and turn this all around and another way will come about so that this won’t have to happen like this.

To make matters worse, I am really not doing well.  I am actually really scared that I might be losing my left foot.  My doctors were always fearful that I would lose my left foot because of how discolored my left leg and foot would get.  It is at the point that the leg gets black as night, and it remains black even when raised.  I have really bad circulation and they have said that even if I do get better, they don’t know if I will end up having to end up losing it after all because the tissues have been deprived of oxygen for so long.  The doctors are also so fearful of me getting any cuts or anything on that foot because of the lack of circulation.  They said that if anything occurred on that foot, it can easily lead to an infection, gangrene, and amputation.

With that being said, I had an accident this past weekend with a can, as a soup can ended up falling on my foot.  Not only is this an excellent way to spread my disease because my disease spreads like a wildflower especially through ‘trauma’, but my toes are more discolored than anything and more swollen too.  My toes are really black and there are even ‘bubbles’ on them too.  I am so scared that something is going on beyond just a soup can falling on them and perhaps ‘bruising’ my toes like a normal person would get from a can falling on them.  I am scared that not only did it stir up my illness because of the ‘trauma,’ but I am scared something else is going on that will lead it to have to be amputated.  I am so scared because this is the last thing that I want.  I don’t want to lose my leg.  I am trying to make an appointment with the doctor and hopefully will get one as soon as possible because the foot definitely doesn’t look good and we all know the difficulty it has in healing too.  Like I said before, the doctors are always afraid of something happening too because they said that if something does happen…it would be extremely difficult to heal and could lead to amputation.  So that is freaking me out even more because I am so scared that not only am I wondering what is occurring because of what it is currently look like, but I am scared that it is going to turn into something worse and possibly lead to an amputation because I can’t “heal.”  So I am just trying to keep as calm as can be and as positive, but it is really hard.

In addition, I went to the orthopedist for my left leg as well the other day because I am having difficulty with that leg in terms of extending it and such.  I can’t basically get up or sit down because anything that causes the knee to extend and flex causes me extreme pain.  I also find extreme pain around the kneecap and it goes up the thigh along a certain muscle and nerve.  I also found a bump by my knee too that felt like a jelly ball but I had no idea what it was.

So I went to the orthopedist to find out what was occurring because not only was I in excruciating pain, but it was getting to the point where I couldn’t even get up or sit down without help because of the severe pain.  Anyway, it turns out that the doctor doesn’t exactly know what is going on completely but he thinks it has to do something with my illness.  I hate how they always blame my illness because I am so medically complicated that they just don’t have answers for me. The doctors just look at me in disbelief and without answers.  I go to doctors for explanations and such, but they never can give me reasons or answers.  With my illness, it is like I am rewriting the medical books.

When I showed the doctor my leg and he saw the jelly bump, he told me that it was a whole huge nerve exposed.  He wasn’t exactly sure why it was occurring, but he did know that being so thin as I am was not helping. I also have severely thin bones so that also causes additional problems because they are constantly rubbing each other.  Anyway, the doctor said what I was experiencing was like having ‘root canal’ in my leg because the whole nerve in my knee and thigh was exposed and giving me pain all the way up.

He knew exactly how painful this all was and wanted to help, but he wasn’t sure if the treatment plan that he had would work. He told me that he had an injection that he could give me to hopefully quiet the nerve and such, but he did say that ‘all bets are off when dealing with my illness because we never know how my body is going to react.’  Not only could my body not ‘accept’ or ‘take’ the injection and the injection would be pointless, but the injection could easily stir up my illness easily and exacerbate it even more.  I am suffering so much already and barely able to take it… I don’t know if I could take it if the disease was to get worse.  You know?  The doctor just had no answers… he didn’t know if the injection would work, stir up my illness, or anything.  Like I said before… all bets were off.

I ended up going for the injection because of all the pain I was in and I figured that I really had nothing else to lose. I figured that if I didn’t go for it, I would always wonder if it could have ‘helped.’  Plus I figured how much ‘worse’ could it get?

Well… the injection was the most painful injection that I ever had.  I am extremely hypersensitive and even the most innocuous touch is extremely painful.  So you can imagine how much being stuck with a needle hurts.  I literally wanted to jump out of my skin.  But thank goodness I had my brother’s girlfriend with me during this procedure because she held my hand throughout the entire thing and tried to make me feel better. I thought that it was never going to end though.  I thought the needle was going to be in there forever because the pain was so intense.

It only worsened afterwards.  Not only did the injection not ‘take’ and work, but I ended up having such a bad reaction to it.  My blood pressure ended up dropping and I became very faint, dizzy, and with a severe headache on top of the pain that I was not experiencing in my leg from the injection as well as from my disease being exacerbated.  The doctor had me lay down for a while and I thought it was never going to end. It took me awhile in order for me to be able to be able to leave.  But like I said before, thank goodness I had someone with me like my brother’s girlfriend to take such good care of me.  I would have never made it through this without her.

So now I don’t know what the next step is for my leg and knee because I am still in excruciating pain and can’t really get up and down without help because of it.  The injection didn’t take and I don’t know what else now the doctors have in mind.  I guess I will have to find out.  Hopefully the ketamine comas/infusions might do something.

Talking about reactions, but I am also having a bad reaction from the new injection that I have started.  I have recently started the injection for my bones because I can’t have the infusion anymore for my bones due to the osteonecrosis.  However, even though I did start the injections in the hospital and I did have a reaction there, the doctor was hoping that with time that the reaction would dissipate and I would be able to tolerate the injections because I so desperately needed them because my bones are really weak and deteriorating.  I can’t get the infusions anymore and these injections are the next best thing.

However, the reaction to taking this injection has only been worsening each time I take the injection.  I keep not only getting swollen and getting a rash, but I keep getting flush and my autonomic dysfunction keeps acting up.  In addition, my heart always keeps bothering me when I take it, and that is the part that really worries me.  I have an appointment with the doctor in the morning to discuss these side effects with him and to see what he wants to do about them because I don’t know what he has planned.  I am scared because I don’t want to stop the injections because I know how desperately I need them because I am so at risk for a life-threatening break, but I am so scared to take them too because I know the reactions that I have been having.

I also have really been deteriorating so much and been weaker than ever.  I have given my dad a great scare the other day because he really thought that I wasn’t going to make it through the night. My cat, Missy, has not left my side since. But like always… I always survive and pulled through because I told my dad that I would never leave him.

Well… I guess that sums everything up as for what is happening right now. I have bloods in the morning. I wonder how horrible they are this time.  I think I should start saying that “I don’t get an bad news, I just don’t get any good news” instead of always saying that I am getting bad news because it seems that I am always getting bad news.  I also have an appointment on Thursday with the surgeon for the Osteonecrosis.  I am hoping that he is not going to remove more ‘dead’ bone because it is so painful.  O yeah, I also have another ketamine coma/infusion planned for Tuesday so at least that is something to look forward to.  At least I know when I go for that it will be one day of a “vacation” from this disease and life.

Like I explained previously, I was also thinking about going to pray at the lebavitch rebbes grave. He was a rabbi that lived in the 1900s and he was said to be as closely connected to god as Moses was. People travel to his grave from all over the world and go there and pray and cry their hearts out to him about anything. People report miraculous recoveries after visiting his grave. When he was alive and would give blessings when they came to see him, they would again say it was miraculous what resulted.  So I was planning on going later this week as well because things are getting so bad.  I am leaving next week for HOPKINS (if all goes well) and therefore, I feel that this is the perfect time to go between everything that I am going through.

Well… I guess that is about it.  Thanks again for all your continued support and encouragement.  If you can think of anything to raise funds for my treatment or anything, I would really appreciate it.  I would appreciate it more now than ever if you can please spread the word of my website and please bring awareness to my situation because I really need your help.  Without your help, I fear that I won’t be able to receive the treatment that I need to live and I really don’t want my parents to give up the 2 last things that they have and cherish.  They already have given up so much (including their lives) and I don’t want them to have to give up those last two things too.  After all, that engagement ring is a symbol of her commitment and love to my dad and it is so meaningful to their relationship.  My dad has only one watch that he has had for over 15 years and it means the world to him. I vow for them never to have to give up those items no matter what.  So… I am not going to let them give them up when they already given up so much already for me.  It isn’t fair to them!

Thanks again for caring and for reading my blog.



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August 5, 2013


Just wanted to update on what has been happening.  As of right now, it appears that we are heading back to JOHN HOPKINS in Baltimore, Maryland on August 18th.  Even though I am really deteriorating and such, I have really have had some issues occurring that is preventing me from being operated on and delaying everything.

I am really suffering and getting worse, but unfortunately, we will have to wait about another 2 weeks until we leave for HOPKINS.  It is taking longer than we thought to schedule everything because it takes so many teams to coincide with each other in order for me to be hospitalized.  It is not like I can just be put into the hospital on any floor and it isn’t like I am having only one operation. Instead, I need to be put onto an ICU floor, which is usually filled because it is a level 1 hospital, and I will be having multiple operations. In addition, when I am being operated, I cannot just have the operating surgeon in the room, but I need a whole team of specialists in the room in order to deal with my complicated nature.  I even can’t just have one anesthesiologist because of how complex my condition is.  Instead, I usually have 3-4 anesthesiologists because they are afraid of something happening and this way they can all work together to make sure that I am in the best of hands and I will be able to survive the operation.  So… the operating room is always crowded and a huge spectacle.  Then, we also have to worry about having the ketamine team available too because I will not only need ketamine during the operation, but I will need to be put into a ketamine coma and have a ketamine infusion throughout the entire time I am at HOPKINS because of the extreme pain I will be in and because of all the trauma that will be occurring to my body.  My disease spreads like a wildflower and especially when there are traumatic experiences.

In addition, besides needing all the doctors and all the different teams to coincide with each other and to be able to schedule everything, my doctors don’t want just ‘any’ doctors on my case.  Instead, they want the head honchos or the ‘senior’ doctors in each specialty because they are the most knowledgeable and probably the most capable if anything should arise especially when they are dealing with a complicated case like me.  Therefore, the ‘seniors’ in the motility department and the GI department will not be around until the 19th and since my doctors want them to see me, they want me to come then.  Of course the would like for me to come now and then stay until then and proceed with the surgeries and stay afterwards, but of course I cannot do that because of the finances and timing.  We don’t even know how we are going to pay for the trip as it is, there is no way we can arrange to make more time beforehand.  So we are planning to hold out until the 19th, so we will arrive when the ‘seniors’ are there and do everything then.

Since we don’t have the time (dad has to work and can’t be away from the business so long) or funds because we will be already staying there for at least 2 weeks, we really can’t afford to go down there now and then stay there until then and then after that date too.  So something had to give and that is why we are going to first go down on the 19th and stay throughout Labor Day.  Even though I am really suffering and deteriorating, we are hoping that I will make it because we really can’t afford to go down now.  We are hoping that during the next two weeks we will also be able to come up with some funds and money to pay for the trip because as of right now, we really don’t have any to pay for the trip and the medical treatment.

One bad thing about staying through Labor Day though is that the rate of the hotel of course is going to be higher.  I really can’t complain or say anything though because the hotel is still giving us a break even though it is going to be much higher than we usually pay.  They have always been so kind to us in the past with giving us huge discounts, giving us a room that overlooks the harbor, giving us concierge access for free because they know how much I need food and such, giving us free internet access, giving us free transportation to and from the hospital, giving us a room when they are supposedly sold out, going to the restaurant and getting me something that they normally charge for because I want to bring it back to the room with me, etc.  They are so accommodating and such that I know that I really can’t complain this time that they are raising our cost because it really isn’t there fault.

The reason that they are raising the cost is because it is the time that the Grand Prix event will be in Maryland and our hotel is basically right in the center of the track.  They close everything around it and we will have special access passes to get in and out of the hotel.  I of course won’t be there because I will be in the hospital, but I can just imagine how cool it will be to see the cars racing right in front of your hotel or just look out your room window and see the race.  I already told my dad that he better take pictures.

We are just going through money like water.  My treatments are just so expensive and the more that we are trying to hold our head up above water… the faster we are drowning.  But I know how hard life is getting, but I am still following my saying… “I am still swimming,” but it is honestly getting harder and harder.  I really don’t know how much longer I can keep going.  I sometimes wonder how much more my body can take.  I am so tired of suffering.  I am tired of the physical and emotional pain.  Sometimes I hope that when I take my medication that I go to sleep forever so I can escape this disease.  The doctors have said that if “Hell was a clinical condition, it would be known as my disease.”  But I know how much I mean to my family and how much I still haven’t accomplished in the world and haven’t experienced, so I continue to push on.  I just don’t know how much more I can take to be honest with you.  It isn’t fair to me though and it isn’t fair what I am doing to my family.  This is no way anyone should have to live.

Dad keeps telling me to “hang in there” because we are leaving for HOPKINS shortly.  We are hoping that going to HOPKINS will help, but who knows if it will.  I will be undergoing multiple operations and I am extremely nervous.  I never have been so scared before.  I am really not sure if I can even make it through all the operations.  In fact, I was talking to the doctor the other day and even the doctor said that the surgeons are extremely scared about me dying on the table.

The surgeons are so scared of me dying on the table that they said that the first operation is probably going to be the one to put the tubes in me to try to feed me.  They are going to try to put the tubes in me and drag then through my entire GI system (through the stomach and intestines) and try to find that small portion at the end in the small intestine that might be viable still to feed me.  They don’t know if they will be able to accomplish this because they have tried this in the past, but they are trying it again.  Also, just because they put the tubes in me doesn’t mean that my body is going to accept the food.  It can easily stir up the autonomic dysfunction and that is a BIG problem too.  We are really between a rock and a hard plate.

The doctors want to try to feed me first because I have absolutely no weight on me whatsoever.  I have an extremely low BMI that is basically unheard of (10.8).  The doctors have even said that I have absolutely like no reserves to help me recover from any surgery or infection or anything else.  Therefore, they are hoping that this will help me in all the other surgeries and if I do get a complication or an infection because it will give me some ‘reserves’.  You know?

After this operation, the doctors will proceed with all the other operations hopefully, which will include getting the other tubes that will ‘vent’ me because I get such gas buildup and I can’t expel it because my entire GI tract is paralyzed.  I will also have the blockage/obstruction removed and hopefully that won’t end up in an ileostomy.

In addition, the doctors are going to try to detox my body because of all the opioids that I have been on for so long.  I literally take over 50 pills daily and they are hoping to get me off the opioids because they do harm and are not healthy to be on.  I am not just on one either, but I take methadone, morphine, dilaudid, nucynta, ketamine etc. on top of all my other medications. In fact, the doctors even just even raised my dilaudid because of all the pain that I am in.  I am literally crawling the walls because of the pain.  I really hope that we can get off the opioids because I take so many medications and have been having so much trouble swallowing.  I literally eat pills for meals and snacks and it would be so nice to be able to cut down the amount.

So there seems to be a lot planned and such. We will definitely have our hands full.  I am just hoping that I will be able to make it through it.  I am extremely scared because my body is not in the best condition and I am really weak.  I am so scared because not only am I scared of dying there, but I am scared that something is going to happen to me there and my dad is going to be there all alone.  No one is going to be there to support my dad if something happens, and that really freaks me out.  I know he would never be able to handle it if something was to happen to me.

In the meantime, we are hoping to raise money so that we can afford to go to Maryland and also pay for the treatment that I need in the hospital because it is going to be incredibly expensive and it will definitely add up quickly.  Even though the hospital is covered, the copayments are extremely expensive.  The hospitalization alone is going to cost me $150 a day.  Then whenever I need to have a scan such as a CT, MRI or an X-ray, it will be another $100 for each.  It will also cost me $100 for each day I go for a blood test and each time I go for a surgery/procedure.  I really don’t know how we are going to afford it.  We definitely don’t have the money right now so in a way we are really lucky that we aren’t going right now.  As it is when my dad is with me in Maryland he won’t be working and there will be no money coming in.

So I don’t know how this is all going to be afforded.  I just hope that my dad doesn’t lose the business or anything because if something should happen because of me, I don’t know how I would ever forgive myself.  I know how desperately we depend on the business to pay our bills and for our income, but without my dad working, I don’t know how on earth it is going to survive because no one is going to want to wait for his return to have him come to do the work.  That is why my dad is working harder than ever right now, which is also scaring me because he is no youngster and I am so worried about something happening to him like him having a heart attack or something.  He works from 3 AM to 7 PM almost 7 days a week.  He is so tired that as soon as he comes home, he passes out.  He is lucky that I am in sooo much pain and can’t sleep because not only does his alarm wake him to get up in the morning, but it also takes me yelling at him to get up for work in order for him to actually get up.  He is just physically and emotionally exhausted and I honestly don’t know how much longer he can keep this pace up.  I was looking at pictures of him from February and just in this short amount of time, I have seen a vast difference in him.  Boy has he aged.

Also in the meantime, I have not been doing well at all.  I have been having an extremely difficult time walking and even standing or sitting.  My left leg is giving me tremendous difficulty, as I can’t even extend my knee anymore without huge amount of pain.  I even need help getting up and down because of the extreme pain.  There is definitely something going on with the leg because I never had pain like this in it.  I am going to the orthopedist tomorrow to see what the problem is, so hopefully we will have an answer.

In addition, I also broke two of my toes because soup cans fell on them.  This is definitely not good because my disease spreads through trauma and this is definitely one way my disease is going to spread.  I can’t even have anything done for them because I can’t immobilize them or anything since immobilization is the worst thing that can be done for my illness.  Whenever you immobilize a limb or something, you spread the illness.  So… I just have to deal with the pain and wait for it to heal.  The problem is that I don’t heal like a normal person.  It takes me forever.  Thank goodness it happened though to my left leg because I can’t walk on that leg anyway. At least it didn’t happen on the leg I depend on because if it did, I don’t know how I would manage to walk.

The osteonecrosis is also worsening.  I have more bones protruding than ever.  I have an appointment with the surgeon on Thursday.

Speaking of bones, I started the new set of injections that the bone doctor put me on.  I went to the hospital this past Friday to start them, but they are giving me reactions.  I am hoping that the reactions will subside and not worsen because I really need them.  Ideally I really need the infusions, but since I have the osteonecrosis, the bone doctor refuses to give me them anymore even though the surgeon for the osteonecrosis said it was “ok” to give it to me because my bones desperately need it.  My bones are really deteriorating fast and they are paper-thin.  I am losing so much bone so fast and they have been giving me these infusions to help build bone.  Besides the very first time that I took the infusion, I have still been losing bone, but the doctors have claimed that without the potent infusions (that have also made me sick when I took them), I would have lost even more.  I have had really good results though with the last infusion because even though I did lose bone in my limbs, I did gain 11% back in my spine and hip.  They are so scared that I am going to get a life threatening fracture, which is a real possibility, because of how frail I am.  In fact, whenever I see the bone doctor, the first thing he always says is, “Have you broken any bones lately?”

However, despite the good reaction of the last infusion and despite how potent and how much I need the infusions, the bone doctor refuses to give me the infusions because of the osteonecrosis.  Therefore, I have no other choice but to add these daily injections to give myself in addition to all the other medications that I already take and the other injections too.  So I went to the hospital on Friday because I had taken them before and had a really bad reaction and the doctor wanted to keep me under “watch” to make sure that nothing serious happened this time.

When I did take the injection at the hospital, I did have a reaction. It was only a local reaction, but it was still a reaction.  I itched like crazy and my abdomen broke out with a rash and was swollen.  It also triggered off my autonomic dysfunction and made me very flush.  The doctor is hoping that with time that the reaction will subside and not worsen because I really need these injections.  This is really our only option and without it, I am really up the creek.  Even with the injections, they are nowhere as powerful as the infusions, but they are much better than getting nothing and are the next best thing.  So we are just keeping our fingers crossed that nothing worse happens.

My dad loves when my bone doctor and I speak because he says that it is like a “comedy act.” My dad says that we just keep nodding at each other because neither one of us has the right answer or knows what to say.

I have really been suffering lately with being very thirsty and very weak.  My dad says that he thinks that I am severely dehydrated despite all the drinking that I am trying to do.  I try to drink as much as I can, but the more that I drink… the worse that I feel.  I have noticed also that the thirstier that I am, the worse that my stomach hurts when I do end up drinking.  Plus, nothing quenches my thirst.  I never can win!

I am also dehydrating probably because of all the mucous that is coming out of me from below.  I don’t know why but there is just so much mucous. In addition, it smells like rotten eggs.  When we asked the doctor, the doctor says that it is because I am ‘rotting’ inside because my GI tract is so paralyzed and not moving.

I am having such difficult eating and drinking anything.  Even getting the ice pops with my heart medications in them are getting impossible to get down.  For me to have trouble getting those down, it has to be bad.  I am not only having difficulty swallowing, but they are making me incredibly nauseous.  I don’t know what I am going to do because I desperately need them because not only are they ‘hydrating’ me to a point, but they have my meds too.  I am literally like running out of options to eat because I am so limited to what I can eat.  I basically can only eat ice cream and egg whites and even that is troubling.

I have been trying though to have other things because if I do end up having the tubes at HOPKINS and coming home with them, I won’t ever be able to eat again.  Therefore, I don’t want to feel like I missed out on anything.  So I am trying to at least taste or at least ‘suck’ on stuff that I might miss later on and this way I can say ‘at least I had it.’  I have had things like McDonald French fries and Pizza… all things that people love to have.  All I want to be is ‘normal!’

Speaking of being normal… you know what my dream is?  I would love to be able to walk around with a cup in hand.  I see how everyone walks around with a coffee or soda or ice-tea in hand to drink.  I can’t do that.  However, I only dream that one day I will be ‘normal’ and be able to walk around with one too and drink it like everyone else.

I am also glad that HOPKINS got postponed because my mom’s 60th birthday is this week.  I really wanted to be here for it because it meant a lot to me.  She has given up so much for me and I really wanted to be here and do something special for her day.  So I am glad that I will be around to celebrate it.  I bought her a plant called a Bromeliad.  It is really pretty and it is supposed to come back every year.  This way if something should happen to me, she will always have something to remember me by,

I have been doing a lot of thinking lately.  I really want to make a mark on society and I don’t know if I will ever get that chance.  I know that I always wanted to be a doctor and help others, but this disease really robbed me of my life and all my dreams.  I really wanted to make a difference in the world and I wanted people in the world to know who I am.

Therefore, I am making a box of letters so that my family and my future family will know all about me and know how much they mean to me and how much I appreciate all of them.  I wrote letters to my parents and brother telling them how much I love them and all that they mean to me.  I also wrote letters to my brother’s future wife and kids so that they will know me as well and know what type of person I was so that they will know who there sister-in-law and aunt was.

In addition, I was thinking about having a Taslich ceremony.  With Rosh Hashanah coming up, which is the Jewish New Year, I really want to start fresh and new.  Therefore, was thinking about having this ceremony as a way of doing so and hopefully maybe it will make me better too.  Taslich is a ritual that invites a person to toss bits of bread into a moving body of water as a symbolic throwing-off of sin and personal shortcomings.  The ritual is one of dozens that mark the celebration of the Jewish New Year, which flows into Yom Kippur (Day of Atonement) and then right into Sukkot, a weeklong holiday when many Jews eat all their meals in little huts they erect outside their houses.  So I was hoping that by doing this Teshuvah, which literally means “return” and is the word used to describe the concept of repentance in Judaism, I can erase my improper actions and can be further helped because only by atoning for our sins can we restore balance to our relationship with God and with our fellow human beings.  If people say prayers are very powerful and helpful, then I am hoping that this is one more way that can possibly help me as well.  Rabbi Kook once said the gist of teshuvah is “the uplifting of the will” (15:2), the strengthening and healing of the sick soul whose will power is weakened. 
  He also said “And a healthy soul in a healthy body must attain the great happiness of teshuvah” (8:1).

In addition, I was also thinking about going to pray at the lebavitch rebbes grave. He was a rabbi that lived in the 1900s and he was said to be as closely connected to god as Moses was. People travel to his grave from all over the world and go there and pray and cry their hearts out to him about anything. People report miraculous recoveries after visiting his grave. When he was alive and would give blessings when they came to see him, they would again say it was miraculous what resulted.

Well…nothing else is really happening.  I am trying to hang in there, but it is extremely hard.  Like I said before, they just raised my dilaudid to help with the pain, but I am suffering so much.  My miracle drug is the ketamine, but unfortunately it is so short-lived.  Dad has to pick up some more ketamine tomorrow, and it is so expensive.  It literally costs us like $200 every other week, and that is on top of everything else.

I have really been trying to keep my mind busy in hopes not to dwell on the pain.  I have been doing some reading.  I have been reading JK Rowling’s new book called “The Cuckoo’s Calling.”  I loved the “Harry Potter” series so I am hoping I will like this too.  I know why she probably wrote this book under another name.  She wrote another book that wasn’t such a great book.  So I figured that she wrote this new one under a different name because this way if it was also a flop like the other one… no one would know.  But if it were a success like it is… then she would come out of the closet and be known.  It was a way of covering her butt.

Well… I am going to rest.  I am in tremendous pain and I can’t really write.  I will let you know more when I know more.  Thanks again for all your continued support.

– Fallon

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