Please help SAVE MY LIFE!

July 29, 2013


I just wanted to write a little because I am not having a good nite and this time next week I will hopefully be in my new residence for awhile.  I will hopefully be in Maryland getting ready to check into John Hopkins Hospital in the morning for the scariest of all my days.  I have some really big scary surgeries coming up and those days are going to be really fearful.  I really honestly don’t know if I can do it.  But… I know I don’t have any other option.  So…. This time next week I will be at the hotel in Maryland probably scared beyond belief (because I am close to that now) and getting ready for the big check in the very next day at the hospital, which I will be staying at for a period of at least 2 weeks or so in the ICU.

I have been following the IRONMAN competition at Lake Placid that has taken place today and I have seen how people have tested their bodies and competed in ways that really put the body to the ultimate!  IRONMAN Lake Placid is the longest-running American event aside from the IRONMAN World Championship Kailua-Kona, Hawaii.   I got to see how more than 2,500 athletes from 19 different countries undertook about 140 miles in order to conquer a course that basically tested the human body to the ultimate. Competitors will begin with a grueling 2.4-mile swim through Mirror Lake.  After covering more than two miles in the water, athletes will take to the bike for the second stage, a 112-mile bike ride that will feature a demanding climb through the Adirondack Mountains.  The final stage will see the competitors run two loops around Lake Placid, covering 26.2 miles in the process.  It is a race that I never saw before and something that really tests the strength of the human body.  When the starting shot went off at 6:20 in the morning, I never thought that the race was going to impact me the way it was going to.

I can’t believe how this race made such an impact on me because it didn’t matter if a person was an athlete or not or what time he finished… all that it mattered was that they finished.  I saw people do whatever they can to make sure that they completed this most strenuous test of the human body and even though they knew they wouldn’t “win” or even come close to it, they still did whatever they could to complete it.  Even though the starting shot went off at 6:20 AM and the first runner crossed the finish line about 13 hours later, you should have seen the crowd outside at the finish line cheering the competitors on at midnight still, as it was still as bigger as ever and the cheering was as loud as ever.  It didn’t matter that it took over 15 hours to complete the course; they celebrated as if they were the first ones to cross the finish line. I saw all sought of people cross the finish line… athletes in tip top shape, older people, younger people, etc.  People in all different looks and conditions did whatever they could to complete the race.  I was recently brought to the attention of a famous quote by Dean Karnazes- “Run when you can, walk if you have to, crawl if you must, Just never give up!” NO matter what the toll it took on their body… they did whatever they could to finish the race.  This showed me that no matter what should happen to me or no matter how difficult the race might be for me to get ‘well’, I should never stop fighting.  I am so thankful that just like the athletes had so many supporters rooting them on that gave them the strength to continue on to finish the race, I am lucky to have the support from others to help me overcome my own race to hopefully get better.  I may not be racing in a triathlon right now, but I am in a huge race right now… the biggest race of my them all… the race for my life!!

I would definitely love to do something like this.  A friend once told me that “God gives his toughest battles to his strongest warriors.”  I am running my own IRONMAN race with my illness.  But, I haven’t crossed the finish line yet.  I have added to my bucket list though that if I get better I saw that this is something that I really want to accomplish.  I would do anything to be able to race in something like this.  I would love to show that I am capable and able to complete endure yet another challenge and I am strong, but I want to run to bring awareness to my story so as to show all that I overcame and to show others what they can do if they “Don’t give up!”  That is why when the seas look all murky and full of sharks, I just keep swimming.

I really want to leave my mark on the world before I leave.  I want to leave my stamp that says I was there.  But I do know how much this illness has robbed and taken from me.  But one thing it hasn’t taken from me is my dignity and strength.  It may have weakened me severely, but it hasn’t knocked me down completely.  I may never get to find a “cure” for this disease, but at least I can bring hope and awareness to others about this illness and maybe others won’t have to necessarily go through what I am going through.  I can give others, like me “hope” that they can overcome anything that they put their mind to!  I just hope that I get my chance because not only do I want to get this time to prove myself to my not only myself, but to inspire others, but it will also be a great achievement because being able to ‘run’ would be amazing.  It would make me feel as ‘free’ as a bird and it would be the biggest gift and reward I could ever have.  I want to be the next ironman!

But I know that just like training for an ironman competition takes time and plenty of practice and training because you can’t just go into it, I have to constantly train and prepare for WAR against this disease.  All these little things that I have undergone have been ‘battles’ that may have gotten me down and I may have lost.  However, the war is not over and I am going in for the ‘kill!’  Hopefully with this trip to Maryland, I will be able to report that a war was won, or if not… at least a battle!

I am extremely nervous about going to Maryland and John Hopkins Hospital.  I have never been so scared in my life.  If this blog is a little rambled and out of sort, please bare with me because I am not doing so well and under ketamine.  I just really wanted to get this blog out because I wanted to let you know my feelings of what has been happening and also of the upcoming plans.

We are supposed to be leaving in 1 week and there is so much to do.  I am extremely nervous because this is going to be so hard on me.  I am so afraid of not just the surgeries, but I am afraid of the outcomes as well.

I will not just be undergoing one hard surgery when I go to Maryland.  Instead, I have ahead of me a set of multiple hard surgeries.  They want to put tubes in me to feed me that will go through my entire GI system (pass through my entire GI tract and go low enough into the intestines to hopefully find a portion that might still be viable), they want to put tubes in me to ‘vent’ me (I cannot pass gas and therefore I get severe gas buildup and distension.  I walk around like I am 9 months pregnant and ready to give birth.  The pressure from the air is causing many problems such as causing my organs including my heart to shut down), they want to give me a procedure where they are going to stop my heart and then have to restart it using the paddles (it is an attempt to help ‘reboot’ my GI system using special medications.  Even though it won’t ‘cure’ me, they are hoping that things might improve), they are planning on removing a twist in the colon or obstruction and it might end up in having to get an ileostomy, do surgery to ‘unload’ me because I am completely stuffed up with stool and despite any attempt with laxative and enemas… nothing works because my GI tract is too paralyzed, and finally they are going to be giving me ketamine around the clock.  I am extremely scared because I don’t know if I can survive this because there is only so much the human body can endure, but I really don’t want to come back with being the ‘artificial’ person.

I am so afraid that I am going to come back with bags and tubes.  I know it will mean that I am still alive, but I don’t know if I would call it a ‘way’ of life.  I don’t honestly know how I would be able to handle this if it should occur.  I really don’t want a bag under any circumstances.  I don’t want to come back feeling not ‘normal’.  The only thing I have left is my dignity and I don’t want to lose that.  If I were to get the tubes, I will never be able to eat again.  To spend the rest of my life never eating, it is definitely not a life to live.

I don’t know what kind of life I would be able to have when I wouldn’t be able to eat ever again.  Yes I know ‘eating’ isn’t everything, but how would you feel if you could never eat or drink again? Not only would I always be hungry and suffer from hunger pains because the only reason a person really feels ‘full’ is because they put food in their mouths and chew it, swallow it, and it registers in their brain through this and by having it in their stomach, but I am so afraid that people would not want to go out with me or spend time with me socializing because they are not going to want me just ‘watching’ them eat.  I know many people that would have issues having me just watch them eat because they would feel so uncomfortable.  I mean I guess it is just normal.

So in the meantime, I am preparing myself just in case I won’t be able to eat ever again.  I have been trying to eat anything and everything in the last few days before I leave.  Even though I can’t really swallow and eat anything, I am still trying because I don’t want to say I should have tried or had.  At least I can say I did ‘try’ it.  You know?  So… even though I have even getting down the very few things and can basically get down ices, egg whites, and ice cream, if anything, I still have been trying other foods because I don’t want to feel like I ‘missed’ out on anything.  So I have been trying to get down McDonalds, pizza, some yummy desserts, etc.  It really has been a ‘lost’ cause… but at least I can say, “I tried!”

I really don’t want to have the bags and tubes.  I really don’t want to feel like I am ‘not human.’  I really don’t want to not ever eat again.  I don’t want to have artificial means to feed me and for ways to get things out of me.  It just isn’t a way to live.  I already told everyone that if I was to get the bags and the tubes, they better have the transplant ready for me the very next day.  I need a very rare, radical, and risky multivisceral organ transplant and incorporates getting a new stomach, small and large intestine, liver and pancreas.  It is extremely dangerous and rare, as only 6 hospitals in the country do it.  It is the hardest transplant to endure and recover even for a normal patient.  The doctors said that if I would undergo it now, I would never survive it.  They said that I have deteriorated way too much at this point to undergo it. Therefore, they want to try to ‘buy’ me time and ‘build’ me up through these surgeries and procedures that I am having done at Hopkins during this time.

I am also really nervous about having these surgeries because they are really dangerous and I am in no way in the best condition to have surgery.  I have really deteriorated a lot and only weigh in the 60s.  I really don’t even have the ‘reserves’ to recover. I am not even undergoing something ‘simple’ or just ‘one’ procedure either. Just being in the hospital itself is extremely a huge risk for me.  I have no immune system and I am extremely hypersensitive.  Anything that I catch is magnified for me.  Therefore, a simple cold or infection is like catching the Flu or Pneumonia and can be extremely life threatening for me.  In addition, since I suffer from a neurological disease that spreads through ‘trauma’ any traumatic experience whether it is a needlestick or surgery can potentially spread my illness.  So I have HUGE tasks ahead of me.

1004765_10100818672934860_1870764316_nI am so scared that I will not make it through because of all that is going to happen.  I am scared too because I won’t have my mom with me.  Even though I will have my dad with me, I would still love to have my mom with me too.  I only wish my mom could be with me too because not only would it be a great comfort to know I have BOTH parents, but I would love to be able to be with her when she celebrates her big 60th birthday.  However, even though I won’t have my mom in person there, I will definitely be speaking to her constantly through the phone and speaking to her through Facetime.  Thank goodness for technology.  I am also going to bring FALBEAR2, which is the bear that she bought me, so I will have it to cuddle with and to remind me of her.  But of course none of that stuff takes the place of her actually being there with me!

I feel so bad because I will be missing her birthday.  I have tried so much to arrange it away from her birthday, but unfortunately, it cannot happen.  It is bad enough to miss any birthday, but to miss a major birthday like that… it really bothers me.  I am really scared too because in my family we have a record of people dying on birthdays. For example, my grandpa died on my uncle’s birthday, and my grandma died in my arms on my brother’s birthday.  I am so afraid that something is going to happen to me on my mom’s birthday, especially since the cards are already against me and when I am undergoing so many dangerous surgeries already.

I really want to make my mom’s birthday special for her. Even though I won’t be here for it, I really want her day to be special.  I don’t know exactly what to get her, but if you have any ideas… I would appreciate any ideas.  I want to get her something really special especially since it is the big 60.  She really deserves something BIG especially with all that she has put up with and since she is the most amazing mom you can imagine.  She has literally given up her life for me.

These past 8 years have not just taken a toll on me, but on my entire family.  My mom has literally given up everything for me!  Due to the financial strain of my illness, we haven’t been on a family vacation since and we really don’t do anything ‘fun’ such as spending the day out.  We are so in over our heads with the expenses that we really can’t afford anything.  My mom would love to go to a Broadway show or even just spend the day doing something, but unfortunately due to the expenses that we have, we cannot afford it.  Therefore, we haven’t had the pleasure of doing anything like that in the longest time and we basically have sat home for the last 8 years.  Due to the financial strain, my mom also has not been able to decorate or redo her house like she would want.  She literally has had to give up on everything that she wanted to do in life.  Even going out to eat has been put on hold.  Between me being so sick and unable to go out to do these things compiled by the finances, my mom’s life has dwindled down to just working 6 days a week and spending the rest of the time within the 4 walls of the house.  She is at the point in her life where she should be enjoying herself.  Instead… she continues to suffer in order to help provide for me and help get me as much treatment even that isn’t a lot because the amount of treatment I need can’t be obtained without the help of others.  So I just want her day to be special and to treat her special because she deserves it.  She never treats herself… this should be one day that she is treated well!

I am only hoping that what happens at HOPKINS works because I can’t take it much longer.  I am suffering so much and I don’t honestly know how much longer I can take it.  I had a ketamine coma/infusion on Friday and I even begged the doctor to please do something more to relieve my suffering even though we have been doing so much already and basically there is nothing left to do.  I already take over 50 meds daily, have had multiple surgeries, had sympathetcomies, machines put in, etc.

No matter al that I have had in the past and all that I am having now… it just doesn’t seem like it is cutting it anymore.  The only true miracle drug I have is the ketamine and thankfully they have started it at home besides getting the ketamine coma/infusions.  However, the part that stinks is that it is so short-lived, as it only lasts 45 minutes, but that 45 minutes is the BEST 45 minutes of my life.  I just can’t withstand the pain anymore.

374451_10100846446855700_1040460059_nI have been begging my dad to take me to Oregon or to Jersey because they have Physician Assisted Suicide and I really really really can’t take it anymore. I am seriously on my wits end with this illness. I have been through a lot with this illness and have always hung in there… but I honestly can’t take it anymore. The pain is astronomical already and unbearable. It is constant and I just can’t withstand it anymore. It is definitely not a life to live. I am so scared about having to live more days like this because I will NEVER make it. I can’t even do anything anymore. I basically stay in the house 24 hours a day because I am so weak and in pain. I can’t sleep with a blanket and not only that… but I am basically naked all throughout the day and night because even the slightest touch is driving me up the wall.

I constantly hurt from the surface of my skin to deep down into the cores of my bone. It is the most painful thing that you can imagine. I constantly feel like I am on fire. I feel like I am being doused all the time with gasoline, and then lit on fire. Then I am sandpapered and have salt poured all over my wounds. It is so painful and no matter what I do… nothing cuts it. The ketamine helps to a point… but it is so short. Like I said before… It only helps like 45 minutes a day and that is like nothing in the whole realm of things (even though that is the best 45 minutes of my life).

Anyway… since I can’t take it anymore… I have found out that they have this Physician Assisted Suicide in like 4 states in the United States. If people can put their animals to “sleep” so that they don’t have to bare the suffering and pain and such, why can’t they do it to humans, you know? I think I deserve the same thing… you know? I don’t want to suffer. So… the only 4 states to do it is Jersey, Oregon, Washington, and Montana and therefore, I have been begging dad to take me there. It is so peaceful because all you have to do is drink this cocktail and you fall asleep. But guess what? My dad is so selfish and of course won’t hear of it. He rather me suffer and be here than me be at peace. I can’t blame him because I know how important I am to him, but at times I wish he would see it from my point of view.  I really don’t want to leave him either, but I am just suffering way too much.  People say that if something would happen to me, my dad would never recover!  I totally agree with them and that is what I am scared of.  That is another reason why I am also scared of something happening to me in Maryland because he is going to be there all by himself without any support whatsoever.

Anyway… I am suffering so much and had to go to the doctor today. So guess what? I even told my doctor all this and how much I am suffering. I told him how I so wanted this done because I can’t take it any longer. So you know what he said? He said… “It isn’t your time… we aren’t ready to let you go. It isn’t for you.” Can you believe that? My dad started to love my doctor even more because this doctor was ‘selfish’ too. He rather keep me here suffering than to let me go peacefully and put me out of my misery. I know they love having me around… but enough is honestly enough. You know?

Well… Like I said before this week is going to be filled with lots of appointments. I have an appointment with numerous doctors including the surgeon for the osteonecrosis.  I have a feeling that it has worsened, as I can feel more bone protruding and it is getting more painful.

With so much going on, there just isn’t enough time in the day.  My endocrinologist wanted me to come into the hospital to start a new set of injections on top of all the other injections and medications that I take.  My bones are really bad and since I can’t get that powerful infusion anymore that is supposed to ‘build’ bone because of the infusion, they want to start me on these injections that are not as potent as the infusion, but will still be better than nothing.  But unfortunately the doctor doesn’t want me to start them on my own at home and I need to start them in the hospital.  I just don’t know what is going to happen because there just isn’t enough time to do everything before we go and I definitely need to start these shots.  But I have a feeling that these shots are going to have to wait because there is only so much that we can do and dad also has to work because he is going to be missing so much work when we go to HOPKINS.   So I can’t blame him for saying that he can’t take me.

I don’t know what is going to happen when dad goes with me and takes me to Hopkins.  I don’t know how we are going to afford everything. The bills are just piled up way so high and we can barely afford the mortgage and everything else.  It is a shame that my life and treatment depends on the green paper.  You know?

Even though my parents would love to give me all the treatments in the world, they just can’t.  Unfortunately, we can’t afford it and without the help of others… there is no way we are going to be able to obtain it.  I am so scared about how we are going to afford even the treatments that I am undergoing now especially when dad won’t be working all that time when we go to HOPKINS.  With dad not working, there is no income coming into the family and the business is also suffering. I am so fearful that something is going to happen to the business because my dad isn’t there to do the work and people aren’t going to want to wait around for him to return.  I know he is going to lose so much work when we leave.  I would never forgive myself if something would happen to the business.

That is why I beg for help from others.  I hate to sound like a ‘beggar’ or a ‘crier’ but the fact of the matter is that without your help… there is no way that I will be able to obtain the necessary treatment that I need in order to try to save my life.  I really don’t want to die and unfortunately we can’t afford it by ourselves.  Like I have said in the past, I have done numerous things to try to raise money, but they haven’t really been productive. If anyone can please help me out and please spread the awareness of my website and illness, I would really appreciate it.  I know the secret probably would be getting the attention of the media, but unfortunately it isn’t ‘what’ you know it matters ‘who’ you know and I don’t know anyone.  I don’t have any ‘connections’ with anyone in the media industry so I am all out of luck in that aspect.  So… I really hope that you can help me out because my life depends on it.

At the very least, I really hope that you will continue to pray for me.  The road has been really hard especially lately.  But knowing that I have your support really helps me overcome all those bumps.  In addition, prayers are very powerful in helping the sick and perhaps maybe through the course of prayers… I can be helped.  It is worth a shot, right?  We have nothing to lose!!

Well… Going to get going because have bloods in the morning. I hope that they don’t drop even more because I can’t afford it.  They are low enough already and my heart is really suffering. Just wanted to write a little and let you know all that is happening.  I am getting some things prepared for my trip.  Planning on taking some good books with me to keep me busy, as well as some good movies.  However, there really haven’t been any good movies that have been released on DVD lately.  Any ideas of some good ones?  I also want to redo my music playlist because at least I will have some good music to listen to.  If you have any suggestions of any good books, music, videos, etc. to bring… feel free to let me know.

Well… talk to you soon!





P.S. One more HUGE reason I don’t want to go to HOPKINS is my animals.  I don’t want to leave them, as they are my BEST Friends ever!


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July 24, 2013


The countdown is on and I am waiting to leave for Hopkins.  There is so much doing lately I feel like my head is spinning.  I have so much to say and I really haven’t been doing well.  If all this that you re reading doesn’t make sense… please bare with me because like I said… I am really not doing well, but I wanted to let you know all that is happening.

So… have so much going on. There is so much to do before we leave and my health is continuing to take a downfall.  I getting sicker and sicker.  Dad is working harder than ever in order to try to fit in all the work that he can since he won’t be able to work when we are at HOPKINS. It is literally impossible to fit everything in before we leave for HOPKINS because there doesn’t feel like there is enough time in the day for work, appointments, etc.

My bloods are really deteriorating and I don’t know what they are going to do because it is going to play a part in the surgeries.  I just got back my latest bloods from the doctor today and unfortunately they aren’t good.  I had a feeling that they were worse than usual because I have felt that they went ‘down.’ I have been ‘cramping’ more than usual and having more spasms more than usual and that could be because of my deterioration in bloods.  With everything else that has been happening such as the increase in the mucous that I am producing I as well as the blood that I keep passing every time I go to the bathroom too, it would really make sense that there was a decline in my blood values, which is something I definitely could not afford because they were so low already.  I already have bloods so low and out of whack that I am at risk of suffering from an arrhythmia or cardiac arrest at any moment.  The lower that they go… the more at risk I will be.  There is only so low you can go though before it can happen and I already was bordering the “3” level.

Well… I went to the doctor today and my bloods dropped.  It wasn’t really a surprise though.  I am seriously waiting for my heart to just give out with everything that is happening between all the stress that I am under, the autonomic dysfunction, the medication that I am taking, risk of the arrhythmia, the low bloods, etc.  It is only a matter of time… I can just feel it.  But… I am still holding on in the meantime.  I also found out though that not only did my bloods drop so that I will be more prone for cardiac arrest and such, but they became more irregular in the ‘clotting’ area.  I have been having abnormal values for clotting and therefore, it has shown difficulty in clotting if I was bleeding or something. However, with this new set of bloods that was taking, the clotting factor was really irregular.

I am really nervous because when I go to HOPKINS, I will be undergoing many surgeries/procedures that will be taking a HUGE toll on my body… especially my heart. With my bloods dropping the way that they are, I don’t know how my heart is going to be able to handle it.  In addition, there is one procedure where they are going to be giving me so many potent medications that my heart is literally going to “stop” and need the paddles to restart it.  I am really worried as it is about having the paddles “restart” it because even though I will technically be unconscious and such, but I am scared that it will be incredibly painful and will not work also.  I am scared that once my heart stops, it will never resume… especially now because my bloods are so bad.  I am sure having this blood dropping is not going to help the surgeries/procedures especially the restarting of my heart.  I am also really nervous because like I said my clotting factor is off.  With having a more difficult time clotting, I am so scared that I won’t really be able to clot when I undergo the surgery/procedure.  I am already in really bad shape and can’t easily recover because I don’t have the reserves to recover.  This is really going to complicate things.

I am sure that everything is going to work out and I am sure that the doctors are going to do something at HOPKINS to work with all this that is going on.  But knowing all that is occurring, I am really scared.  I guess it is only normal though because who wouldn’t be scared?  I have been going through so much and it just continues to worsen.  I just keep wondering if there is ever going to be a light at the end of the tunnel.

I have been trying to take the medications to raise my bloods more than ever, but it is really hard to withstand and it feels the more that I try to do, the harder I am falling.  I can’t really get down all my meds and they have made ice pops with my heart meds in them.  So I have been increasing the pops to try to bring up my bloods.  I even have pops all throughout the night in order to keep up my blood values, but apparently it isn’t working.  But… can you imagine if I didn’t have these pops?  My values would definitely be much lower.

I am getting so bad that I can’t believe what my life has turned into.  I used to be such a “happy” person who didn’t let my illness get the best of me.  I used to be the first one not to show that I had an illness.  In fact, people would never know that I even had an illness because I would never show it.  Yes I was really thin and had crutches because I couldn’t walk, but that was about it… I wouldn’t let the disease get to me, as I would go out as much as possible and always look the best that I could.  I always believed that if you ‘looked great’ that you ‘felt great’.  So… I always made it my business to make myself look as good as ever so that no one would know how horribly I was suffering and the misery that I was going through.  People just thought I was just really thin with a bad foot because they would always see me around with a great big smile.

However, it has gotten to the point where I can’t conceal that I have an illness anymore.  No matter how hard I try to ‘cover’ it up and still to look the best that I can, I just have ‘illness’ written all over me because I look so very sick.  I have deteriorated so much and therefore, despite all the makeup to try to cover up the illness and all the smiling… it just can’t do it anymore.  I am just suffering way too much and the pain is just way too much to bare.  It has worn me down and it has gotten so horrible that people can easily see how badly I am doing even though I really don’t want people to feel ‘sorry’ for me.

With my disease, it is a constant battle and I have to be ready for the fight! I am continuing to fight this awful disease even though it is extremely difficult. I won’t let it win! I’m an extremely stubborn and strong willed person and it takes a lot to knock me down!  In addition, if I do get knocked down, I get back up! It’s just who I am. It’s not an easy battle at all and I get quite frustrated and upset at times. The pain is unbearable and I hate it… I truly hate it! I hate what is happening to me.  Yet, I continue to fight.  I always say, “When life gets you down, you know what you gotta do? Just keep swimming and swimming!”  So that is what I am doing!

I suffer all the time (24/7) from nonstop searing pain that is burning, aching, throbbing, etc.  I constantly feel like I am on fire and being doused with gasoline.  The weather changed and keeps changing so I’m all screwed up. It is hotter than ever, and I am sure that isn’t helping my illness.  On a scale of 1-10…my pain level has been pretty much a constant 10 +++ for days now. Everything hurts! I am soooo tired and feeling run down and out of it. The pain is getting to me. I can’t move at times because it just hurts so bad.

I have been deteriorating so much that I literally can’t get off the couch.  Whereas I used to be my best in the beginning of the day and get worse throughout the day and have my nights at the worst, the beginning of the day is even starting off with me being in a horrendous condition.  If I ever wanted to do anything, I would have had to do it in the morning because by noon I was too weak, sick, and in pain to even move.  However, it is at the point now where I can’t even get up out of bed in the morning.  I am just getting so very sick in general.  In addition, since my disease makes me so hypersensitive to everything… even touch… I am having extreme difficulty with even tolerating clothing.  I think partially the reason that I am having this heightened sensitivity to clothing and such is because of the weather because I am so very ‘hot’ and can’t cool down.   I can’t sweat or anything due to my autonomic dysfunction and therefore, I keep blistering and overheating because my disease and autonomic dysfunction keeps being triggered off.

I can basically not tolerate anything due to the extreme allodynia that I am suffering from.  I can’t tolerate even being touched by the most simplest innocuous touch like a touch from my family such as a loving hug.  I have basically been having to walk around my house without clothing (especially pants) because I cannot tolerate any touch on my body.  I usually can’t tolerate a sock or a shoe on my left leg.  However, it has now gotten to the point that I literally have to walk around my house basically naked because of the pain.  It isn’t even the answer to the problem because even walking around with the my skin exposed is painful.  I am damned if I do and damned if I don’t because it hurts so much to have even my skin exposed.  That is why no matter what I have to wear something with sleeves on my arms.  I can’t have the “wind” hit me because anything that hits my skin will literally send me up the walls.  I am like in a whirlwind and in a constant battle because I can never feel comfortable.  I like need air conditioning, but I can’t have it being blown on me.  Everything is just so complicating.

In addition, my nails have been getting worse too.  My nails have become really brittle and falling off.  Everything is just going downhill.

There used to be a time that even though I was suffering with this illness, I would suffer throughout the day, but it was only the nights where I would lay awake literally screaming for mercy.  However, it has gotten to the point where I am screaming nowadays all throughout the day.  I can’t believe how bad the pain and suffering has gotten.  I never once thought it was possible to even get this bad.  Dad keeps saying that he wishes that he could ‘take away the pain.’  I know that he would if he could, but I also know that he would give it back in a second because he wouldn’t be able to handle it at all.  It is something no one can imagine.

I am really worried actually about going to John Hopkins.  I will be leaving shortly.  I am scheduled to be leaving August 4th, but if the call comes in sooner than that… I will be leaving earlier.  We are awaiting for a bed to open up in the ICU and for everything to be scheduled because there is so much to do and I can’t just go into the hospital in a regular bed.  It really makes it harder to get a bed there because it is the #1 hospital in the nation and a “Level 1” trauma center too.  But the doctors said that the latest I will have to wait is until August 4th.  So we are all scheduled for that day to leave, as long as the call doesn’t come in sooner.

I am really excited to be going to Hopkins because I am really suffering, but I am really really nervous.  I really don’t know what to expect and I am really scared that something is going to happen there.  After all, I am going for really scary, radical, and life threatening surgeries/procedures and to make things even more complicated, I am not in the best of conditions withstand anything. Even just being in the hospital is jeopardizing my life because I don’t have an immune system really and any little I can’t fight off anything.  Infections loom in hospitals and anything “minor” is something “major” to me.  The littlest cold or sniffle is like a life threatening full blown flu to me and I also don’t have the reserves to recover from anything should I get sick.  So we really have a lot we are going up against when I go to the hospital.

Like I said though in past writings, we have so much stuff planned.  We have it planned to get the obstruction/twist in my colon out, which I am hoping won’t end up in an ileostomy. They have been talking about having this ileostomy, but I am so against it.  I really don’t want a bag.  I told them that I am going to write all over my body “NO BAG” and if I find out that there is a bag, the heads of doctors are going to roll.  You are going to turn on the news and hear all about a neurotic patient going crazy at Hopkins.  When I told my dad how I don’t want a bag and such, my dad says, “Whatever has to be done is going to be done.”  My dad doesn’t want anything to happen to me and he will do anything and everything to keep me alive.   I know where my dad is coming from because if it really needs to be done, it should be done, but I really don’t want a bag.

In addition, I am also going to be having surgery to put tubes in me.  One tube that will be put in me will go through my entire GI system and go into my lower intestines.  They want to try to feed me in order to try to ‘nourish’, make me stronger, and ‘buy’ time.  Therefore, they are hoping that if they go low enough into the intestines, then perhaps they will be able to find a viable piece that they can use.

They are also planning on putting a tube in to ‘vent’ me.  Due to the extreme paralysis of my GI tract, I can’t move gas through.  I walk around at times like I am 9 months pregnant and ready to give birth.  In this way, I will be able to open up the tube and it will ‘vent’ me.  It will give a way to allow the gas to escape because not only am I in severe discomfort with this gas buildup, but it is doing a lot of damage to me as well.  It is also contributing to shutting down my organs as it is putting a lot of pressure on my organs including my heart.

Another surgery they are going to be doing is removing all the stool that is in me.  I have pounds and pounds of stool because of this.  Since my GI tract doesn’t move, I am literally ‘rotting’ inside (sorry to be so disgusting).  Therefore, they are doing surgery to remove the stool as well.  I have tried every type of laxative, enema, etc. but nothing works…. from enema bags, miralax, etc.  The only thing left is surgery!  Therefore, even though they know that the weight I am is not ‘true’ weight because I am all filled up with this stool, I am really nervous because I know once I get all this removed, I will most likely weigh my true weight, which is in the 50s.  Stool takes up so much weight and that is why people who have eating disorders and such take laxatives and when they end up purging the stool out… they lose weight.  However, even though I know I technically know that this weight that I am is really inflated because of the stool, it really is going to be a big shockaroo to see the actual true number in the 50s.  You know?  Doctors never thought I would lie this long because of my BMI.  They said that it is like unheard for someone in my state to even be living.  But I told them that I am defying medical odds.

If that isn’t enough, they are also going to be doing a surgery where they are going to be giving me very potent medications that will end up stopping my heart.  They will of course need the paddles to restart it.  They are hoping that with these medications, it will help to ‘reset’ my GI tract and even though it won’t ‘cure’ me, the hope is to help reverse some of the damage that has been done.

Finally, with all that has been happening, they are planning on giving me ketamine around the clock and putting me into a in-and-out comalike state. Thank goodness because I am going to need it with all this that is happening.  They also want to give me ketamine because my disease spreads like a wildflower and anything that is considered ‘traumatic’ can potentially spread my disease such as the IV, surgery, stress, etc. So… they are hoping that since I will have all these things that put me at risk to spread my illness, they are hoping the ketamine will keep it under control.

I am really scared.  I never have been more scared in my life.  I told my dad that I never have been more scared in my life and it is so important more than ever to have the support of anyone that I can.  I need prayers more now than ever because of everything that is happening.  I am so scared of all that is going to happen and I am so scared about coming home NOT human. I really don’t want to come home all on bags and tubes.

One of my biggest fears is not to feel human.  This disease has really robbed me of a lot and I really don’t want it to rob me of my dignity as well.  It has robbed me of friends, family, walking, eating, social life, etc.  Everything that people take for granted has been taken away from me.  I don’t want to think of just ‘existing’ in the world and having tubes to put stuff into me and bags to take stuff out of me.  Even though living like I am right now is not really living to me, living with bags and tubes isn’t making my life better.  I mean… I think I might be able to handle one of them, but definitely NOT both.

I do know that if I get the tubes, I will never be eating again.  That really bothers me because what kind of social life will I have then because so much of American social life revolves around food.  People are always eating and people go out with others to restaurants and talk over food and drinks.  Who is going to want to go out with me when all I can do is ‘watch’ them eat?  Most people are not going to want me to just sit there watching them because they will feel uncomfortable.  In addition, I will always feel hungry.  Even though I will technically be ‘full’ because I am being fed through the tubes, I will always be hungry because it is bypassing my mouth, not being chewed, and not going into my stomach.  Therefore, it won’t register in my brain as ‘eating.’  So… my stomach will constantly have the hunger pains of not eating even though technically I will be full.

I can’t believe that this is all just really to ‘buy’ time because without all this stuff, I will not make it much longer.  The doctors say that I am really deteriorating really rapidly and getting too sick to really go on like this.  In fact, I was just at the endocrinologist the other day and he said that he would “never have expected me to live this long.”  But I told him I am defying medical odds.

Something really needs to be done and done quickly because I am running out of time. In reality, I really need the multivisceral transplant (stomach, small and large intestine, liver and pancreas). However, it is very radical and very dangerous.  Only 6 hospitals in the country really do it and they are really scared I won’t survive it.  They think in terms of my GI problems that it will be my only answer, but they don’t think I will survive it right now.  That is why they are also trying to do all these things at HOPKINS this time… They are trying to ‘buy’ time because my organs are shutting down, I am rapidly deteriorating, I am weighing less and less (I only weigh like in the 60s now), etc.

Since I am so afraid of getting the tubes and I won’t be able to eat anymore, I am trying to enjoy whatever time I have now eating.  Even though I have difficulty eating now and basically can only have really soft stuff like egg whites, ices, and ice-cream… I am still trying to get down the “good stuff” so that I can’t say that I lost out on having the good stuff or I missed out on it either because once I get the tubes, I won’t be able to ever have it again. I have been trying to eat anything and everything that I can such as McDonald French fries because I don’t want to say, “I should have had.”  If I have to get the tubes or even the bag, I just hope I will be able to get the transplant right afterwards as soon as possible so that I can get my life back and I can get back to eating.

I have really been suffering lately and I honestly don’t know how much longer I can hold on.  I really am scared for all that is going to happen at Hopkins, but I am even more scared to living like this.  Therefore, something definitely has to be done because I can’t exist like this anymore.  I am literally watching myself deteriorate and die, and I am suffering in agony.  I can’t take the pain because it is not just physical pain, but it is emotional and pain because I am watching my whole life get taken away from me and everything that I had and was able to do is being taken from me.  I even feel like I am losing my brainpower.  I used to be so very smart and had photographic memory.  Now I can’t even say that.  It is just not a life to live.

I already told my dad that when we go to HOPKINS that I am thinking about signing a “Do Not Resuscitate” order.  I wanted to do it the last time I went for surgery, but just when I was about to do it, I couldn’t do it because I looked at my dad and I knew that he didn’t want me to do it and how it hurt him so.  So… I ended up not doing it.  However, it is at the point now where I just can’t do this anymore.  I am tired of suffering.  It isn’t fair to me or to my family anymore.  I have even pleaded with my dad to take me to Oregon or to Jersey for “Physician-Assisted Suicide” because I really can’t take it anymore.  Only four states in the country do it.  It is so peaceful and at least I won’t have to suffer anymore.  After all, people put their animals to “sleep” so that they don’t have to suffer anymore.  Why can’t I have the same opportunity?  The pain is just out-of-control.  I don’t want to die… believe me! But something has to be done.  I would do anything to live.  But if I can’t receive the treatments that I need and if I am suffering so much and nothing is working, I need something to “help.”  I don’t want to die, but I know that I just can’t live like this!

When I go to Hopkins, I will be there for quite some time.  I am really nervous because not only do I not know what to expect and scared for something happening, but I am also going to be missing my mom’s 60th birthday.  I really didn’t want to miss her birthday because it is such a special birthday.  After all, it is the big 60th.  I feel really bad that I won’t be here with her to celebrate her special day.  I also really wanted to do something for her to make her birthday really special. However, due to my current situation and lack of funds, it really is impossible.  My mom keeps telling me how she doesn’t need or want anything, but I still want to do something special for her.  After all… she is my mom and she means the world to me.  She has given up so much for me and has given me so much in life.  I owe her more than I can ever give her.  I just want to make her day special and show her how much she means to me and appreciate her.  If you have any ideas what I can get her, let me know.

I recently had an appointment with the endocrinologist and was told that I can’t receive the bone infusions anymore.  Even though my bones are extremely brittle because of my illness and I am literally at risk for a life-threatening fracture, the doctor refuses to do the infusions anymore that can potentially help me.  I have been going for bone infusions that were supposed to be building bone.  I have been undergoing them for about 4 years and even though it was only the first year that I really had “good” results, the doctor claimed that without the infusion, my bones would have been a lot worse.  My bones have been really getting worse each year, but without the infusion, which was supposed to build bone, I am sure that it would be even more horrendous.  In fact, my bones are so bad that the doctor even told me not to let anyone ‘touch’ me. When I see him, the first thing he always says is “Did you break any bones lately?”

Even though the surgeon who deals with the Osteonecrosis says that I really need to have the bone infusion because my bones are so bad, the actual doctor who prescribes and does and the infusion is refusing to do. It is really a shame though because I really need this infusion because this is the most powerful medication that can ‘build’ bone. The doctor is putting me on other medications to try to help, but they are nowhere in comparison to the infusion.
Photo Jan 30, 2 22 05 PM (1)I don’t even know how I am going to tolerate the medication that he is putting me on because he has placed me on it in the past two other times and both times we had to stop it because of reactions.  It will be another injection to add to the mix of all the other drugs and injections I already take.  I am glad it won’t be another pill because I already take like over 50 pills and can’t swallow anymore, but I am like a human pincushion already because I already give myself injections for other stuff.  In addition, it is best to ‘rotate’ the sites but since I don’t really have meat on me, I can’t do that.  Therefore, I only have one place to put all the injections, which is in my abdomen.  So everyday it is in the same spot.  It really gets painful.

Guess what though?  It is a real shame that I can’t get the infusion anymore because for the first time since the very first infusion, I actually had an increase in the amount of bone that I built.  I had a bone study and even though I lost a lot of bone still in my arms, I actually built back 11% of bone in my hip and spine.  That is a lot of bone.  But unfortunately, I will most likely lost it right away now especially since I am not having the infusions anymore.

Speaking of the surgeon for the osteonecrosis, I have an appointment with him on Thursday (next week).  I have some more dead bone protruding so I wonder what he is going to do.  I wonder if he is going to remove it at that time. I will let you know.

In addition, I am having another ketamine coma/infusion on Friday.  Hopefully we won’t have any bad complications.  Even though the amount I get during these in New York is nowhere near the amount that I really need to make a difference in my illness, it is still something I go for and look forward to.  It is the only time I actually get a ‘vacation’ from my illness.  Ketamine is known as an NMDA receptor and theoretically it is thought that in a high enough dose it can potentially reverse my illness.  However, since the dose in New York is nowhere high enough, we are still hoping that it is helpful.  It is definitely helpful in giving me the benefit of giving me that little vacation from my illness.  But we are hoping that these ketamine infusions/coma will also be stopping or slowing the progression of my illness.  My illness spreads like a wildflower and even though the amount I am getting definitely won’t reverse it, we are hoping that at least it is slowing it down.

Ketamine is like my miracle drug.  When I go for the ketamine coma, it is the only time where I can rest.  I suffer all the time from nonstop searing pain.  I never sleep except for that brief period of time (up to 30 minutes) after I take my meds because they knock me out, so when I go for these ketamine infusions/comas, it is the only time I can escape this suffering.  I actually get a full day of suffering free because I am given this infusion and in this coma like state for the entire day.  Unfortunately it is only short-lived and after it is stopped the pain and all the suffering comes back, but at least I get a brief time of suffering free.  It is moments like that time that I cherish.

I love my ketamine and I am so fortunate that I have now been able to take it at home.  I recently have been given it at home and it has been extremely helpful.  Now I know exactly why people turn to drugs and why they call this drug “Special” K on the street.  Only though this drug only lasts a really short time like 45 minutes, it is like the best 45 minutes of the day.  It makes me so numb and in such a daze that even though I am in so much pain and agony… it kinda numbs me and such that I don’t even care.  It is also the only time that it knocks me out and I can get some sleep.  I don’t know what I would do without it.  Unfortunately though, it is not covered by the insurance and is extremely expensive. I also can’t get it at an ordinary pharmacy and very few places carry it.  I actually have to have it ‘compounded’ at a special pharmacy in order to have it made.

1044884_10100841311966060_661690592_nI have the most amazing dad.  Dad spends the nights awake with me while I take the ketamine because ketamine is a drug that you ‘hallucinate’ with.  It can get a little bit scary when you take it because you get a ‘weird’ feeling and you suffer from things that aren’t true. You get into such a euphoric state at times also that you end up laughing like a hyena too. I will constantly call for my dad when I have the ketamine without me knowing.  The doctors say that my dad plays an important role because when I am under ketamine because I really only respond to someone that is ‘familiar’ to me.  The doctor says that he is the one that makes me feel ‘comfortable’ while I undergo it.  My dad is not only my dad, but my best friend and knight and shining armor.  He is my superman!  There is nothing that he wouldn’t do for me.  I love him to death.  I am so fortunate for all the things that he does for me. He works himself ragged just so he can try to get me as much treatments as he can (even though I need more treatments than that).  My dad is so fearful of ‘failing’ me, but I told him that he can never do that.  He has been my hero from day 1 and always will be.  I would never ever blame him for anything!  Nothing will ever be his fault. If it wasn’t for him, I definitely wouldn’t be here today!

1012409_10100838059978070_975447790_nMy dad is so special to me.  When I can’t walk, I know that I can depend on him to carry me like Superman.  When I am upset, I know that I can depend on him to make the sun come out and make me laugh. He is the one who always jokes around and plays around with me no matter.  There is never a dull moment when dad is around and he’s so unpredictable.  He loves taking pictures, so one time when we were in the car, he had his hard hat in because he needs it when he goes to construction sites.  So you know what he did?  He put it on me and snapped a pic.

It just stinks that everything that I need that can potentially help me costs money.  I keep wondering what this world would be like if that very green dollar didn’t exist.  It is so unfair that my life is deteriorating and I am dying and yet, I can’t receive the necessary treatment that I need because I can’t afford it.  That is why I have been trying so much to raise money.  Everything just is so expensive and without it… I will surely die.

With my health deteriorating the way it is, I am so scared that I won’t get to fulfill all the stuff that I have on my bucket list.  I want to do so many things before I die.  There are so many things that I was robbed of and that I never got a chance to do. I only wish at times that I was under 18 because then I would be able to do “Make-A-Wish” Foundation and get one of my wishes granted.  However, since I am not… I guess it means that I am left to just “wish.”  I have so many dreams and wishes, but I know in reality… that is all that they will remain… dreams and wishes.  I would love to go to Atlantis and England on vacation (not only would I love to go on a family vacation because my family and I haven’t been on a vacation in like 10 years and we could use some FUN time together, but I would love to see all the castles in England and enjoy swimming with the dolphins and the warm weather in Atlantis), meeting various actors such as the Kardashians, Ellen DeGeneres, Kelly Ripa, etc.  One of my ultimate wishes though is to actually meet Prince William and Princess Kate, but of course I know that is definitely never going to happen.  However, I must say that I did predict the day and time that the baby was going to be born.  I should have betted.

However, there is one dream that I have that every girl always has, which is dressing up like a princess in a wedding gown and getting married.  I know that probably will never happen because I probably won’t live to see the day that I get married.  Plus… with all that is happening to me, I don’t honestly know what guy is going to want someone like me anyway.  But one of my biggest dreams has always been to feel like a “princess” and get married.

I ALWAYS had the dream of getting married and having that father daughter dance. However, I know deep down that in reality that this day probably will NEVER happen. I won’t live long enough to see this and I am not going to b able to even ‘walk’ much longer as I’m struggling nowadays to even just make it on crutches now but won’t give in because I don’t want to be in a wheelchair. Anyway… I was thinking of getting a beautiful gown (I was hoping I could rent it out it something because we know that it can be so very expensive) and I wanted dad to rent out a tux. Then I was thinking about having a ‘father daughter dance’ like in a park or something.  I figured we can bring a boom box or something and dance in one of the places where u can get ‘married’ in a park. It’s stupid … Right? I figured this way I’ll get my dream and dad will always have these memories to hold into also. I would love for an audience and for people to watch and see like a real father daughter dance when people watch… But I doubt anyone would want to come. I doubt anyone is going to even rent out a wedding dress for the day and I bet it would also be expensive. This just all ‘talk’ anyway. I know in reality that it’s never going to happen. But it would be nice to have this as a memory just in case I don’t live long enough and just in case I am in that wheelchair, which is a real possibility.

I also want to let you know that I also am trying to post YouTube videos.  I have my blogging here on my website, but I was thinking about also having YOUTUBE videos as well because sometimes watching movies is more interesting and fun than reading all this long and boring stuff.  I have been working on the computer and learning how to make movies, so I thought it might be a good idea.  Not only would it be easier for you to see and learn all that is happening with me, but it would be fun for me to make and sometimes it is easier to just ‘talk’ than to write.  This way also you can actually ‘see’ what is going on.

I really want to make my mark on the world before I leave.  Therefore, I figured that through my videos, I might be able to accomplish that.  I thought that I cannot only bring awareness to my illness and have others learn all about it since it really is unheard of, but I figured also on the clips that I can talk about various things such as books, show you cool things I do with my animals, etc. If you have any suggestions of things I can do, please let me know.  I am always open to suggestions.  The videos aren’t so good right now, but they are just starting and I am learning.  I guess the saying goes “practice makes perfect!” So we will see what happens with that.

546849_10100841312345300_1722097579_nMy dad recently showed me a bird’s nest right outside our window.  It is the cutest thing in the world.  There is a momma bird that keeps coming back and forth to feed her babies.  I told my dad that no one better touch it!

Well… I am going to get going.  I am really not feeling well, but I just wanted to write and let you know what is happening.  Thanks again for all your support and encouragement.  I can’t tell you how much all this means to me.

Here is the site to my latest BLOG YouTube video: http://youtu.be/pax5IptO_l8

– Fallon

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July 16, 2013


I just wanted to write and let everyone understand what I am going through because I realized that maybe not everyone is familiar about my story.

I was once an A+ student who loved school, was involved in many extracurricular activities, was a competitive figure skater, and violinist.  I had friends, loved to go out, was able to have fun, was able to eat, etc.  However, all that has changed in the last few years.  I have spent the last 8 years incapacitated, paralyzed, and unable to sit or walk and eat. I spend most of my days confined at home and alone.  Any normal touch will cause pain; my clothing, the gentle touch of a loved one, a sheet, rain, shower, razor, hairbrush, shoe, someone brushing by me in a crowded hallway, etc. I can’t even tolerate wearing clothing especially a sock and shoes or even sleeping with a blanket because anything that touches my skin sends my up the wall.   In addition, sounds, especially loud or deep sounds and vibrations, will also cause pain; a school bell, thunder, loud music, crowds, singing, yelling, sirens, traffic, kids screaming, loud wind, even the sound in a typical movie theatre. I have to take appropriate actions when in bright lights and sun such as always wearing sunglasses.   Finally, the temperature has to be a perfect 74 degrees without any humidity or wind because any deviation of that number can easily be felt.

The pain I feel is indescribable, as I suffer all the time… 24 hours a day 7 days a week; I never get relief.  All attempted treatments have not even come close to relieving any of my suffering.  I have seen many, many doctors, undergone numerous painful tests and procedures (i.e. stimulators, sympathectomies, blocks, surgeries, radiofrequency, etc.), has been prescribed over 50 medications and there really isn’t a medication that I haven’t tried, and has been hospitalized frequently including being intubated and on a ventilator. I am severely debilitated and currently weigh only in the 60s. This is certainly no life for a 31-year-old young woman!  Yet, despite all that I am going through, I am still continuing to push onward, hoping for a day that I will be able to be pain free and able to resume my dreams of becoming that “doctor” that I have dreamt about.

I suffer from a rare and life threatening illness known as Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder, as well as autonomic dysfunction, severe gastroparesis, osteonecrosis, and a pituitary brain tumor.  On a daily basis, I suffer from constant sharp, stabbing, tingling and burning pain throughout my entire body; paralysis; intense muscle spasms; gastroparesis; severe headaches; redness and discoloration of the limbs; tremors; twisting of my limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; and painful skin ulcers.  It is the most painful illness you can experience and it hurts constantly.  In comparison to other diseases it is ranked higher than cancer, childbirth, and even amputation of a digit. I constantly feel doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week. I constantly get prickly and blister because I can’t sweat due to the autonomic dysfunction. Then it feels like I have no skin left on me because it is all burned off and all that is left is raw skin with salt put onto it that is rubbed with sandpaper.  I also have allodynia, which is extreme sensitivity to touch, sound, and/or vibration.   The pain is constant and unrelenting, but despite my suffering, I still hope that I can get better and therefore, my family and I have been searching for a treatment that can help me despite all the letdowns that we have had.

My journey with this disease can really be traced back to 2001 when I just finished up my freshman year at NYU, when I was 19 years old because that was when I was officially diagnosed.  However, even though that was the time I was officially diagnosed, we think that I have had this illness much longer than that, but due to how mysterious and unknown this illness is… we just didn’t know it.  When I was a competitive figure skater and used to injure myself and break bones, I used to fall, break bones, turn different colors, have an overly excruciating and out of proportion amount of pain, and had to wear a cast longer than a normal person.  However, even though it took me longer to heal and such, I was still able to overcome all of these injuries and never looked further into it because we never had any reason to or even knew that there could be any underlying problem such as this that could be causing it; we didn’t even know this illness could exist.  Then, right before graduating high school I became bed bound for about 2 months and it was discovered that I had a mass that exploded in my abdomen.  The mass had tangled up all my organs and as a result, when the doctor operated to remove it, they also untangled all my organs and they also took out my appendix because you didn’t need it anyway.  However, after having this surgery, I had a very hard time eating, as it was very difficult and painful.  But we never really understood why this was occurring.  Even though I was suffering from the pain and trouble eating, I still returned to going to school and enjoying my life. However, 2 years later things changed because I started having difficulty walking and I was told that I needed surgery on my foot because I was “walking” on the bones and getting masses and calluses inside

After completing my first year of college at NYU, my life changed forever. I took my last

Final on one day and the very next day I went in for reconstructive surgery for my foot because of the extreme difficulty walking, as I was getting these masses and calluses inside.  However, now that we know that I have this illness, it is unknown whether it was the disease actually causing this pain that I was exhibiting and making it difficult to walk OR if it was actually because I was “walking” on the bones and getting masses and calluses inside.  Yet, in any way, I literally went to sleep for surgery one way and woke up another way.

When I woke up from surgery, I was in excruciating pain. The pain was the most intense pain that you could imagine.  The doctor blamed it on the surgery and said that the pain would ease up.  However, it never did and only worsened.  When I was unable to walk on the foot because of the pain, the doctor said to my parents that they needed to “take away my crutches because I was having psychological issues from seeing the pins coming out of my leg.”  Even though I knew that this wasn’t the case, we had nothing else to go on, so what other reason could there be? It wasn’t until later that night when I was at my computer and my whole entire body went blue that we knew that something was definitely wrong and it was definitely NOT in my head; it was definitely more than just a fear of walking on the foot!

Most people (and doctors!) have no idea how serious Reflex Sympathetic Dystrophy is and no clue how to properly diagnose it, and that is why it had went so long without being diagnosed and even now it wasn’t being diagnosed.  If it weren’t for the first doctor that we saw happening to know about this complex and mysterious disease, we probably wouldn’t be here today, still fighting because not many doctors know about it.  Even when doctors do know about it, they often misdiagnose it on a person too.

We instantly started our journey in trying to seek the necessary treatments to try to get better.  Yet, despite whatever treatment I have endured, the pain has becoming more intense and unbearable and the disease was continuing to spread.  We started out with doctors in the local area and extended out network to incorporate doctors all over Long Island and then all over New York.  You would think that you would definitely be able to get help in New York considering how advanced in medicine New York is by having so many top name hospitals.  However, never did we imagine that we were going to have to seek treatment and the knowledge of specialists across the nation.  This disease was not just painful, unbearable, unrelenting, but also extremely expensive.  As it turned out most of the treatments were not covered by health insurance and the amount of treatments and appointments that we had to see were astronomical.  Even the ones that were covered had copayments and therefore, they quickly added up as well.  We even had to consider the traveling expenses.  We went from being able to live comfortably and pay our bills to having bills just pile up.

Despite all the pain, my weight continued to plummet.  I went from weighing a healthy weight to weighing only in the 60s and having a BMI of 10.8.   My GI tract was shutting down and it got to the point where I had difficulty swallow anything including my medications.  In addition, I vomited constantly.  Every time I put anything in my mouth, even ice, I would throw it up.  Doctors tried TPN on me and other ways of feeding me, but they all failed.  My body was just shutting down.

I have had so many treatments and despite all the treatments that I have had, I am still continuing to suffer.  I have been treated with multiple pain medications, at the highest possible doses, that many doctors have told us that the amount of medications I am taking is enough to “kill a horse.”  Yet, they had little or no effect on me.  That being said, I also underwent, stimulators and also sympathectomies not only to help with the pain, but also to help save my limbs because my limbs would discolor so much and literally turn black from lack of circulation.  Thankfully though it was discovered that there was one treatment that would work called a Ketamine coma that could potentially relieve my symptoms and help save my life.

The drug Ketamine holds great promise for patients with RSD.  Ketamine is considered a NMDA receptor and could potentially “cure” me.  However, due to my RSD being full body and so severe, doctors have said that the best treatment for me and that can possibly put me in remission and afford me some semblance of a “normal” life is out-of-the-country because it is not FDA approved in the United States.  Even though I was getting ketamine infusions/comas every other week in New York, the amount of ketamine that I was receiving was nowhere compared to the amount I needed to be put into remission and hopefully reverse the illness.  During out-of-the-country coma, the hope would be that my brain will “reset” itself so that my nervous system will be able to send the correct signals to my brain.  Even though it cannot be accomplished in these one day infusions/comas in New York that I undergo because the amount of ketamine that I get is way too low, it is still a great relief to get because it is the ONLY time I am out of pain.  It is also thought that hopefully it is stopping the spread or at least slowing the spread of the illness, which has been shown to spread like a wildflower because anything traumatic (a needle stick, a punch, stubbing your toe, surgery, a shove, etc.) can easily spread it.

However, it is extremely expensive to have this coma out-of-the country and will cost easily over $100,000.  So in the meantime we are looking to getting a more intensive ketamine coma that I am getting in New York that will take place in North Carolina.  Although not as intensive as the one not in the United States, it is the next best option.  It is also a bit more affordable, as it is only half as much.  So we are hoping to at least be able to accomplish that.

In addition, as my body is shutting down and my GI system is completely dead, I will need multiple surgeries on that as well.  It is hoped that possibly the ketamine in a high enough dose could possibly help this as well, but it isn’t guaranteed.  We have recently just came back from John Hopkins Medical Center and will be returning within the next two weeks for multiple surgeries.  I will need tubes placed in me to try to give me nutrition, they will possibly be putting in a ‘vent’ to try to get the gas to escape me since I get so distended and it won’t move or pass on its own, a ileostomy, and they will even be giving me certain medications that will stop my heart that will have to be restarted again with the paddles.  It is hoped that when the heart stops and through the medications administered during this time that it will ‘help’ my GI tract.  These treatments are not ‘cures’ but to try to help me ‘buy’ time so that I can possibly live longer.  The only cure for my GI tract besides that huge ketamine coma out-of-the country is to get a very rare and radical multivisceral transplant (stomach, small and large intestine, pancreas, liver), which only 6 hospitals in the country perform.  It is extremely dangerous and expensive.  Therefore we are hoping that I will be able to have that transplant as well, but it will mean that we will need plenty of help affording it and it will be extremely dangerous because I am also in no condition for surgery.  I am so fragile that there is such a high risk associated with this procedure.  I am so underweight and don’t really have the reserves to heal or to recover.

Some might think that the above procedures such as the ketamine comas/infusions and the all the surgeries including the transplants are extremely radical and scary treatments.  However, what scares me more is to think that I could spend the rest of my life in this condition… unable to walk, eat, or take care of myself. Since all reasonable treatments have failed to help me, I am willing to try everything and anything to help regain my life back.

This illness has not only affected me, but has taken a great toll on my entire family.  Plenty of friends and family have walked out on me, and you really learn whom your true friends and family are when you are in need.  The only ones that I have really behind me have been my family.   Yet, this disease has taken a huge toll on my entire family both financially and emotionally.  It kills my parents for what is happening to me and that they can’t do anything to help me.  Despite all the ‘trying’ that they do and wanting to ‘help,’ they can’t get rid of this illness.  I can see the pain in their eyes all the time as they watch me suffer.  I know that if they could take this illness away from me for even a minute that they would.

They are the ones that give me the strength to keep on living and holding on.  I just wish that I can be held and hugged by them, but even that is impossible because even the gentlest touch is painful to me.  My dad is not only my dad, but my hero, best friend and knight and shining armor.  He takes me to all my doctor appointments and carries me out of treatments and when I cannot use my crutches.  He spends countless nights awake when I am having a worse night than usual.  People definitely say that if something happens to me, he would definitely never recover.

It pains them so much that they can’t afford the necessary treatment that I need to hopefully be able to live.  Despite all the cuts that we have made, we are really having a hard time paying the bills.  My dad’s business isn’t doing too well, especially since he is always away with me.  We have tried countless ways to raise funds such as through websites, Facebook, writing to the media, making posters, etc. but nothing has been successful really.  I know the ticket is to bring as much attention to my illness as possible and how the media would be the ticket for success.  However, I know that it isn’t “what” you know in this world and it is “who” you know, but unfortunately we don’t know anyone to give us the necessary connections to be able to get my story across on television or any of the other types of media.  It hurts me so much when I see other stories heard and no matter how hard we try, I just can’t get my story heard.  If nothing else, I want to get my story heard so others can become knowledgeable about this mysterious disease and show others how much they should appreciate life and not take anything for granted.  People don’t realize how fast something that they easily take for granted such as eating or even walking can be taken away.  People don’t realize that when they have their ‘’health’ that they have everything in the world.

My goal is to one day become a doctor.  My goal is that with all these treatments, especially the surgeries at John Hopkins and the ketamine comas/infusions that I will be able to get that chance.  Therefore, if you can please bring attention to my website and please say a prayer, I would really appreciate it.  It is a constantly battle that I am going through, but knowing that I have your support and encouragement really means a lot and gives me the strength to keep going.  Thank you for standing behind me through this fight.  Even if the worst should happen and I don’t happen to win this war, at least no one can’t say I didn’t put up a good fight!!

Thanks for everything.  Until Next time.



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July 13, 2013


O my goodness do I have so much to tell you.  I really have a lot to talk about because there is so much going on.  In fact, my head is still spinning after all that has happened today.  I can’t believe all that is happening.  Perhaps once I put all that is happening on paper (well actually into the computer), maybe I will get a grip on reality and maybe I will better be able to handle what is going on and know what to do because at this point, I am ready to go bananas.  I have to come back here to have really hard, radical and life-threatening surgery in 2 weeks and I am really freaking out.  I never thought I would be having the surgeries and procedures that they told me about today.  You know things are bad because dad let me go and buy things after my appointment without even questioning me as to “do you really need it?” like he usually does.  I never saw my dad like this, so you know things are bad.

Well… I did make it to John Hopkins Hospital in Maryland with dad.  When we arrived at the hotel, we found out that not only were we given the discount that we were already promised, but they also added an additional discount to our stay, which made our stay cheaper than we originally thought it was going to be.  So, the day started out being great because of course saving any money is a good thing because we really don’t have money to spend fruitlessly, as the bills that we have are stacked up.  We really have to watch every single penny because my treatment is so very expensive and it does cost a lot to be able to go and get it too.  So… any penny saved is definitely worthwhile and a HUGE plus because it is extremely helpful.

1005077_10100831593062820_1297797712_n 382562_10100831595677580_328178162_nThe room was simply gorgeous.  Actually the whole entire hotel was magnificent.  It was located right on the harbor and it connected to so many things to do such as shopping, Ripley’s Believe it or Not, Restaurants, etc.  Even the aquarium was not too far or even the Hard Rock Café.  Our room was even magnificent.  We were fortunate enough for the manager of the hotel to give us a room overlooking the harbor at no added cost.  I was really happy because I knew that I probably wouldn’t get to enjoy going to the harbor as much as I would have liked.  By having this room, I would be able to overlook the harbor and watch the boats and everything.  Nothing could compare to the view that we had.  It was simply amazing.

1011524_10100831708815850_1150769227_nThe room was really nice and it was set up very nicely.  However, it had this one device by the bed that dad couldn’t figure out what it was.  When I told him it was a sound device to mute out the noise and everything, he thought that I was joking.  However, when the valet people bought up our suitcases, I questioned them and they confirmed that it was indeed a sound device because it could get very noisy even though we were on the 12th floor because the nightlife here is amazing.  I told my dad that it was to mask his ‘snoring’ because we all know how badly he snores and how much I can’t take it. I spend the whole night literally beating him up because he snores so loudly and I can’t deal with it.

Dad also said that it was “my day” to do whatever I wanted.  Knowing how it is so beautiful here in Maryland and how our hotel is sitting right on the inner harbor, I really wanted to take advantage of the area.  However, my disease really doesn’t permit me to do as much as I would like.  My dad and I went out and walked around the harbor, but I really would have loved to go paddle boating or even go to “Ripley’s Believe It or Not!” I really would have even loved to stay out longer than we did, but like always… my disease ruins everything and prevents me from having a good time.  My dad did say that he would take me “paddle boating” because he knew how much I really wanted to do it, but lets be frank about it… how would he manage to ‘paddle’ both us around by himself?  So since it wasn’t ‘free’ and wasn’t ‘cheap.’ I didn’t want to see him waste his money on this to find out that he couldn’t do it all himself because honestly I felt that it was going to be an impossible feat to ‘paddle’ all by himself because why else would there be peddles on the boat meant for 2 people?  I didn’t want to chance it.

1016173_10100831710567340_23691807_nIn addition, the sun, heat, and mugginess really did flare up my illness and caused it to really become worse than ever and as a result, we were forced to go back to the hotel.  I am extremely in pain and highly hypersensitive.  Therefore, the sun was burning me because it was way too strong and it was too hot outside too.  Plus, with all the mugginess of the weather too, it just was not a good combination.  It just really flared everything up and it felt like my pants were on fire.  When I get hot, I cannot sweat because of the autonomic dysfunction and as a result, I end up getting prickly and blistering.  It was nothing but a disaster, but dad was my usual hero and came to my rescue.  He took me back to the hotel and tried to make me as comfortable as possible.

969003_10100831703765970_2108860727_nI was really disappointed that I didn’t get to do all the great things that I wanted to do. I really wanted to go to “Ripleys” but the heat got to me and I would have loved to go to the HARD ROCK CAFÉ to get a sweatshirt, but it was too far of a walk.  Maybe we will get to do these things when we come back the next time.

1070023_10100831704289920_1542768395_nI do have to say that I was impressed that on my outing that I saw these solar power trash compactors. I couldn’t believe that there was such a thing to be honest with you.  I wonder why there wasn’t more of them around like in New York.

The day finished up by going for dinner and having problems in that area too.  I didn’t even want to go for dinner, but like always, my dad made me because he said that I couldn’t afford to “lose weight.”  Due to my illness, I can’t eat and swallow many foods and the ones that I can need to be prepared a certain way.  I ended up having to send back my food so many times because it wasn’t made how I needed to it be that we ended getting our dinners free.  If my dad would have known our dinners would have been “free,” I am sure that he would have ordered something else.

My dad usually orders meals when we go away based on the cost. When you are strapped for cash and watching every penny, the cost plays a huge factor in whether you get something or not even though you might want something else.  My dad much rather have wanted something else I am sure at this restaurant that we ate at tonight, but he ended up getting a turkey club.  He should have had some seafood or especially crab or something considering that we were in Maryland and it probably would never have been better than if he got it here, but he ended up going with the Turkey club because of the cost.  However, if he knew that the dinner was going to be free, he probably would have went with a better dinner such as the seafood or something.

When we were sitting at dinner, my dad said to me that the chef was looking at me. I saw the chef come out, but I didn’t think my dad was really serious.  Well… no sooner did he say that but the actual chef came out of the kitchen with my food.  We had sent my food back so many times that the actual chef came out to personal hand deliver the food and to make sure that it was made to my liking and to also apologize for everything that had occurred.  I couldn’t believe it.  But to further add to our surprise besides the chef coming out, they ended up not charging us at all and the bill wasn’t cheap either.

But that was yesterday and today didn’t go too great and was filled with so much bad news (well good news depending on how you want to look at it).  I should have known something was going to happen from the moment that I woke up because first of all we overslept when we couldn’t afford to because today was filled with all my doctor appointments at the hospital and the weather was also nasty outside.  We didn’t set a wake up call because we thought we would definitely have been up because my dad never sleeps late.  We didn’t have to be at the hospital until 9AM, so ideally we didn’t have to be up until 7 AM because we would have to get dress and grab breakfast.  There would be no way that we would need a wake up call because dad never sleeps that late.

But I guess dad was just so exhausted from all the hard work that he has been doing at his job and such and with all the stress that he has been under because he actually overslept.  If it weren’t for my mom, we would have definitely missed our appointments.  I never sleep either, but right before 7AM, I ended up taking my meds, which always knock me out for a brief period of time.  When I take my meds, it knocks me out for about 30 minutes, which is the only ‘rest’ I get.  Of course when I wake up, it is back to pain and I am up for the duration.  But thankfully, my mom called us at a little over 7AM to say “Good Morning,” which woke us up so we weren’t late to the hospital.

What a day we had at the hospital!  I am really glad in a way that we came to John Hopkins because I am really happy with my new team of doctors here even though I am extremely exhausted and fearful about all that is about to happen.  I never thought that I would have to undergo all that is going to happen, but I hope that I am in good hands because I am at John Hopkins.  After all, they are ranked like the #1 hospital in the country. Never before did I feel so comfortable at a hospital.  I really loved the team of doctors that I met with.  They were incredibly not only incredibly knowledgeable and willing to help me, but they were also incredibly nice and had excellent bedside manners.  They really made us feel extremely comfortable and took their time with us.  They didn’t just “rush” us in and out.  They answered every question that we had no matter how stupid and repetitive it was.  They really made us feel “welcomed.”

Unfortunately though, the doctors did say that I am way too sick to be helped right now.  They said that in the past, they have been known to hold people in their office for hours if it meant that they could help them and do something.  However, in my case, they said that it would even be impossible to do anything at all if they held me all day because I am so medically sick and medically complicated.  As a result, they said that I needed the help that went far beyond their hands.  They said that I needed the work of the entire hospital, as I needed the help of specialists from various disciplines across the entire hospital spectrum.  Therefore, they said the only thing that we could do was be hospitalized in order to be actually helped. They said that what needed to be done required not only to be hospitalized but because it was so life threatening as well, I would have to be placed into the ICU.  It couldn’t even be the “step down” ICU, but it has to be the very ICU itself, which is extremely difficult to get into because there are only so many beds.

As a result of it being extremely difficult to get into the ICU and because they are going to have to schedule all the surgeries and procedures that are going to have to be done, it is all going to take some time.  In addition, since the upcoming procedures and surgeries are going to be extremely life threatening and dangerous, I really want to go home and see my mom before they are done just in case something does in fact happen.  Therefore, they said that while they get everything organized (which will probably take about a week or two), I should go home and enjoy myself and spend as much time as I can with the people that I love.  After all, what I am going to have when I come back is extremely dangerous and scary.

I am really surprised that they are letting me home because with all that they told me that they are going to do, I would be afraid that my patient would not want to come back.  I mean… to be honest… I am really starting to get cold feet just knowing all that is going to have to be done. I am not going to lie, but I am extremely nervous.  But I know that it is something that has to be done or I am going to die.  It just stinks that this is so very dangerous and can kill me just as well.  But I guess I have no other choice and something I am going to have to chance.  I just hate that I am going to have to miss my mom’s birthday too because when we come back it will be the time that my mom will be celebrating her 60th birthday.  With all that she has done for me and has given up, I really wanted to make her birthday special and grand. I really hate that I won’t be around to do that for her.

34719_10100831707074340_472583904_nUnless something happens sooner, we are supposed to be heading back to John Hopkins June 28th.  We were already instructed that if I was to feel any worse whatsoever, we were to come to the ER immediately.  Hopefully I will be able to last though just like I have always managed to do so.  I really don’t want that day to come because I am so very scared, but we all know that the more you don’t want something to come, the faster it will.  So… I am sure that day will be here in no time.

When we come back, there will be so many surgeries and procedures that I will need to go for.  They said that I am so very sick and my GI tract is so ‘dead’ and sick that it is overly stretched and the nerves are just ‘shot.’  I questioned them if it was normal to be experiencing the symptoms that I have been experiencing for my illness and they totally said it was.  I never feel that I am ‘full.’  You know when you eat how you gradually feel fuller and fuller until you reach capacity and feel completely full?  Well I never get that feeling of feeling fuller and fuller.  I always feel hungry until that split second when I feel overly full.  It really stinks because I am so hungry and then I get slammed because I feel just overly stuffed.  When that happens, I get overly distended, I vomit, and my autonomic dysfunction starts up. There is never a dull moment with me.

Since my GI tract is so bad, I need radical treatment to be done.  Of course the best thing that could happen would to get a new GI system, which would require getting the multivisceral transplant (new stomach, small and large intestine, pancreas and spleen).  But this is extremely risky and I most likely won’t survive it.  Therefore, we need to do other things in the meantime to try to buy me time and build me up to prepare for that transplant because most likely that will have to be the end result.  However, if nothing is done in the meantime, I won’t last much longer because I am rapidly deteriorating and my organs are shutting down.  I basically weigh nothing and have a BMI of 10.8.  I really can’t afford to lose any more weight whatsoever.

The doctors also think that I have an obstruction or twist in the colon.  However, due to the colon being so distended and stretched, it has kinda worked in my favor because it has allowed me to be able to live with this obstruction or twist longer than a typical person.  So even though they would like to deal with this right now, they are hoping that I will be able to make it until my return visit before they do because any bowel or GI surgery is extremely risky and complicated.  When you have any GI surgery, it is the hardest surgery to do because the chance of complication is extremely high.  There is so much bacteria in the GI tract and therefore, it is the most risky surgery you can basically have.  You really have to be strong to have any sought of GI surgery.  So that is why they are hoping to wait until next time I come because this way I can have everything set up and such.

Therefore, when I come back, I am not only going to have this obstruction or twist looked into and taken care of, but they are going to be doing other surgeries and procedures too.  One type of procedure that I am extremely scared about is that they are going to give me these types of medications that are extremely strong and potent and have the ability to really ‘reverse’ things in my GI tract.  The thing is that on top of ‘reversing’ my GI tract, it will be stopping my heart as well.  The doctors told me how these medications will stop my heart in a second and I will have to have my heart restarted by the paddles.  It is through this restart of my heart and GI tract that my GI system is supposed to be ‘reversed.’  However, when they talk about ‘reverse’ all they mean is that it will go back a bit to being perhaps more tolerable.  It won’t cure things.  It will only mean that I won’t be so distended and it will make me feel better.  It definitely should make a huge difference even though it won’t technically cure me.

I am extremely nervous because just knowing that they are going to stop my heart and need the paddles to restart it, it is freaking me out.  I am so scared that my heart won’t restart or that my body won’t be able to take it.  I am also scared that when they use the paddles to restart my heart that it will be so painful. After all, when they use the paddles, there is so much electrical current going through your body.  That is why they yell “clear” and the body “jumps.”  I remember when my grandma was dying and they were asking me about the “Do Not Resuscitate Order,” they said that she would never survive a resuscitation really because the paddles alone would hurt her and probably do damage.  I am so scared that they are going to do the same thing to me.  After all, I am so fragile and such.

If left untreated, my condition is extremely dangerous, as it may cause ischemic necrosis and colonic perforation, with a mortality rate as high as 50 percent.  Therefore, they are going to do some procedures to try to help that as well.   In addition, they are very concerned about putting weight on me to buy me time because I am so underweight and emaciated.  I am extremely malnourished and they are worried that without any nourishment, I am not going to make it much longer.  Plus, I am going to need nourishment in order to recover from all these procedures.  I have no reservoir to help me out to fight any infection or to basically recover from anything.  So, they want to put tubes in me as well.

Besides also trying another nasal-jejunal tube, which is a tube that they pass through the nose, through the stomach, and into the intestines so that they can try to find one small viable portion in order to somewhat give me nourishment, they want to try different forms of TPN.  I have failed all these in the past, but they want to try different forms and mixtures that my body might better accept.  But I am a bit leery because of all the other times I failed it.  I am scared because I know how much this has stirred up the autonomic dysfunction and exacerbated my illness in the past.  I really don’t want this to happen again.  But I don’t know if we are going to have any other choice at this time.  They are even talking about one cocktail even consisting of just breast milk.  I feel like I am not even a normal person again between all the interventions and tubes.

On top of all this, I will be getting ketamine around the clock.  Of course all this stuff definitely would not be possible without the ketamine because my disease spreads through trauma and you can bet your dollar how much “trauma” all this stuff is going to cause to me.  Therefore, I am definitely going to need ketamine not only to hopefully stop the progression of the disease with all these surgeries and procedures that I am going to have, but it is needed because I am going to be in so much pain.  Ketamine is really my “miracle drug” because it is a NMDA receptor and has the potential of reversing my disease and stopping the progression.  Of course for it to really reverse my entire disease, I would need such a high dose of ketamine that is not FDA approved and not able to get in the United States.  So in the meantime, I have been getting littler doses in hopes that at least it would slow down the progression and not spread as fast.  I am also hoping that even though it won’t “reverse” the disease entirely, I am hoping that these littler amounts will reverse it a little.  Any bit is little than spreading.  You know?  I have seen firsthand the miracle of ketamine because the last time I had a procedure I couldn’t even stand afterwards because my disease really did spread big time.  However, they rushed me into getting ketamine right away and after a few days of getting the ketamine, I was back to being able to stand.  It really is my miracle drug and so important that I have it especially if I am going to be having all this happens to me.

In addition, the doctors are going to try other treatments, medications, etc. to try to save my legs.  My entire body has been discoloring worse than ever lately due to my neurological condition, which means lack of circulation.  My legs especially have been blacker than ever and despite even elevating them, they really don’t resume normal coloration.  The doctors are really worried that something is going to happen to them like amputation and therefore, they are trying to do whatever they can to ‘save’ them.  One thing that they are going to do is possibly give me Viagra or Ectasy.  Don’t laugh.  Ectasy is an NMDA receptor and therefore, it might be extremely helpful because NMDA receptors like I have said in the past have the potential of reversing or stopping the progression of the disease.  That is why ketamine works so well.   They are thinking about using Viagra because it will hopefully increase the circulation.  These are definitely 2 meds that I never thought I would be taking.  However, they refused to start these meds out of the hospital because of all my complications. They said I need to be closely monitored.

However, ketamine is extremely dangerous and you have to be carefully monitored when you get it.  That is another reason why I need to be placed in the ICU.  I can only be in the ICU when I get it and in fact, not every ICU in the hospital will even do the ketamine.  The doctor literally has to ask the ICU if they will do it and it is up to them if they will because the nurse has to feel “comfortable” because of how dangerous it is.  It has to be done in the ICU because I need to be on a one-to-one and be so closely monitored.

The doctors are also going to try some other medications on me as well that are extremely risky to be tried as an outpatient.  One such drug that they are going to try is low dose naltrexone.  Low-dose naltrexone holds great promise for the millions of people worldwide with autoimmune diseases or central nervous system disorders or who face a deadly cancer, so perhaps it can help me too.  By blocking opioid receptors, it is hoped that naltrexone is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production. Many body tissues have receptors for these endorphins and enkephalins, including virtually every cell of the body’s immune system.  In fact, when they did a study of giving this drug to people with autoimmune diseases, none failed to respond; all experienced a halt in progression of their illness. So perhaps it will help me too.

My brain tumor on my pituitary gland is also getting worse. The doctors want the neurosurgeons also to look into this as well because it is also wreaking havoc on my body.  Since most doctors in other hospitals are hesitant to touch me and operate because of how risky and complicated I am, my doctor here at Hopkins wants the doctors here to look at it because they are used to highly complicated cases.  Lately my cortisol level and prolactin level have been higher than ever and are way too high.  These are all being caused because of the tumor and show that the tumor needs to be taken care of.  So we will see what these doctors have to say.  Never a dull moment.

When I saw the whole team of doctors today, the doctors also suggested giving me bisphosphonates as an infusion on a regular basis for my neurological disease.  I get bisphosphonates once a year for my bones because I have severe osteoporosis thanks to this wonderful disease.  However, even though this might be helpful to help treat my neurological disease and even my bones more because even though I do get it every year, my bones are still continuing to deteriorate.  Even though this infusion makes me extremely sick too and I am still losing bone, the doctors are saying that if I wasn’t getting these infusions, I probably would be losing even more bone.  So, I have been still continuing to get these annual infusions despite the fact that I am still losing bone because they believe that it would be a lot worse.  Even though raising the dose and giving it more could possibly help maybe my bones and my neurological condition, it is completely out of the question because I suffer from osteonecrosis, which is a disease, caused by reduced blood flow to bones in the joints. In people with healthy bones, new bone is always replacing old bone. In osteonecrosis, the lack of blood causes the bone to break down faster than the body can make enough new bone. The bone starts to die and may break down.

The osteonecrosis has already gotten so bad in my jaw that it is protruding into my mouth.  I have already had parts of my jaw removed because it is dead and there is plenty of more dead bone protruding and causing me even more pain.  To have this pain and suffering on top of all my other pains and suffering from my neurological disease and gastroparesis, it really wreaks havoc on me.  It is thought that perhaps the bisphosphonates might have contributed also to the osteonecrosis because they believe that since the jaw takes up so much absorption of the bisphosphonates, they think it killed the bone.  So, if I were to increase the amount of infusions because of neurological disease, it would really harm me because of the osteonecrosis. It is like I am helped in one way and screwed in another in no matter what I do.

So that appears all that is happening.  The next week or two are going to be extremely hectic because it is going to entail having a lot of talking to doctors and a lot of organization going on.  As it is, we have been on constant phones with the doctors at Hopkins all day today even after we left them because they have been in constant touch with us. Even though we aren’t there, they are continuing to proceed with meetings about me and talk about me to make plans for my arrival and such.  I never thought I would be able to say that I am going to know like doctors from every single specialty in a hospital.  I can make like a whole directory of John Hopkins after all this.

The doctors were so impressed with my condition that they already warned me not to leave any records or pictures with anyone.  Whenever I go to the doctor or to the hospital, I bring my entire medical records and pictures that document my disease so that they know exactly what goes on.  After all, I am so complicated and something that isn’t seen everyday.  I turn different colors, swell, shrink, etc. and to be quite honest I am a sight to see.  That is I am on “show” when I go into the hospital. I constantly have everyone coming in to see me because I am a very rare case and something they don’t see everyday.  It kinda bothers me that I am always on “show,” but if I can be of help to someone else and if they can learn off of me because they don’t see cases like me and you can’t really find me in a textbook, then I guess it is worth it.  But the doctors want to make sure that no one takes my records or pictures as way of learning or having my disease to show others.  You know?

So… I am heading home in the morning to enjoy the next two weeks.  I am going to try to make them the best two weeks of my life because I never know what is going to happen when I come back.  When we come back to Maryland, we are going to be staying in the same hotel.  The staff at the hotel is amazing and they really treated us like family.  They really made us feel comfortable.

1069826_10100832742604130_954550955_nWant to hear something funny?  When we came back from dinner today, we went to go into our minibar in our room because we have been putting our sodas in there so we have them nice and cold to drink.  We wanted to take our medications and therefore, when we went to get them out of the minibar, we ran into a huge problem.  For some strange reason we couldn’t get the door open.  Dad tried to pry open the door by various ways but no matter what he did, he couldn’t break open the door.  Finally we called the front desk and they sent someone up.  The stupid minibar locked itself.  We were told it wouldn’t lock again and we thought we were safe.  But now at 2 AM in the morning when I want something to drink… guess what? I am locked out again.  Only my luck!  In addition, the waiter made me some special Maryland crab dips and such to bring home to New York.  We put them in the minibar as well in the meantime until we leave so that they can be kept cold.  However, now that the minibar is again locked, I guess that is the end of that.

Well… I guess I am going to get going.  I have had a big and exhaustive day.  I really have a lot to think of and I am extremely scared.  In fact, I never was so scared in my life.  I don’t know how on earth I am going to be able to survive this.  I am going to need all the support I can get.

I am also scared because August is my dad’s busiest month at work.  I am afraid because with me being so sick and going to be in the hospital for so long, he won’t be able to work, which means that there won’t be any work really going out.  Even though my mom will be remaining at home to watch the business, people are not going to want to wait around until my dad returns.  Therefore, I fear the amount of work he is going to lose out on.  I know how much of a hard time we have been having paying the bills, paying for treatment, etc. and I don’t know how are going to do this all… especially pay for this huge trip to Maryland… without the help of others because dad won’t have the business as an income during the time we are here in Maryland.  We are having extreme trouble now paying the bills now and we have had to make cuts in my treatment with dad working, how are we going to pay for things when there is no work going out?  If my father loses the business, I don’t know what I would do.  I would never forgive myself if he lost the business because of me.   I just know that during the next two weeks that he is going to work harder than ever (if that is at all possible) so that he can try to make up as much work as possible.

I just continue to hope and pray that everything will work out.  I just hope and pray that not only will I make it until I am supposed to come back to Hopkins, but that others will continue to support me as well because it really does make a huge difference knowing that I have the support of others who care when battling this war.  I also hope and pray that others spread the word of my website and bring attention to my illness so perhaps we can receive funds that can really help us out because it is so desperately needed.  But… of course I am not going to count my chickens before they hatch because I have been let down too many times in the past.

In the meantime, I have been living on my ketamine at home.  It has really been my miracle drug and made a difference.  They recently raised my dose, but it still really stinks that it is so short-lived.  I only get 45 minutes relief because the half-life is so short.  But that 45 minutes is so worth it!  Now I know why people call it “special K”!

Well… until next time….




July 10, 2013


Just wanted to post this because wanted to let you know that I am off as of tomorrow (Thursday) to Maryland.  We are heading towards John Hopkins Medical Center and I am extremely nervous.  I really don’t want to go, but I know this is something that has to be done. I have actually been hoping that Thursday never comes and that I can freeze time because I really don’t want to go… but like always… when you don’t want something to occur, it comes faster than ever.

Even though my appointments with the doctors are on Friday, we are leaving tomorrow (Thursday) because we need to travel to Maryland and get settled.  Plus… since we are flying, we cannot first fly out on Friday since our first appointment is so early on Friday.  However, even though there is more than one flight tomorrow, my father wants to go on the 6AM flight so that we can get there by like 7 something.  Maryland isn’t that far away, so we should get there in no time.  However, he wants to get there early because he feels it will be the best option for us since the airport will be less crowded at that time, it will be easier to go through security, parking at the airport will be easier since we are leaving our car, etc.  I better also go early so that my dad doesn’t have to ‘rush’ because we all know what happens when my dad ‘rushes’ or gets nervous that he is going to miss the plane because it is too crowded or something… remember what happened the last time?  Dad ended up leaving our carry-on baggage on the plane and we ended up having to board our connection and leaving the bag that had all my medical records, medications, etc behind in hopes that we would be able to have it found and returned to us.

I never sleep anyway because of this illness, so it really isn’t a big deal in terms of waking up to leave for the airport, but in terms of getting my body out of bed and moving… that is another story.  With my illness, it usually takes me forever to get out of bed because the pain is horrendous.  But, dad still wants to leave before the sun comes up and get to Maryland as early as possible.  Hopefully since we are leaving so early, my disease won’t act up so much and be so much of a trouble because as the day goes on… my disease happens to get worse and worse.  Traveling is extremely rough on me and that is another reason why dad wants to leave early because it will be easier on me because my illness isn’t so bad compared to as the day progresses.

Since all my appointments begin on Friday and we are arriving extremely early, I am hoping that the weather and my disease will permit us to at least enjoy some of Baltimore.  I really don’t get to do a lot or enjoy anything or get to go out a lot, so I am hoping to be able to take advantage of this trip by being able to go to the harbor and watch the boats or something.  I know that the traveling will be rough on me, but I am hoping that it won’t be so bad and I will be able to at least do something with my dad.

It would be a shame if we can’t take advantage of the day because we are staying in the Baltimore inner harbor.  Our hotel is right on the water and we will be able to relax as we sit alongside the water and watch the boats.  We are supposed to have a room that overlooks the harbor, at the very least, so even if I can’t get outside because of my illness, I will still be able to enjoy the view.  But of course nothing will compare to actually sitting alongside the harbor in the outdoors.  I am going to need to relax especially tomorrow because I am extremely worried about my appointments on Friday because I am most likely going to be having the emergency surgery on Friday.

Although I have been to John Hopkins previously with my mom, this will be the first time that my dad will be there.  I had such an amazing time with my mom and I can’t wait to enjoy it again with my dad.  Our hotel is the same hotel that I stayed with when I went with my mom and therefore, it is located right on the harbor and in a location that where I will have the opportunity to see the boats, walk outside, and do so many other things.  After all, Baltimore’s inner harbor is one of the most photographed and visited areas of the city. It has been one of the major seaports in the United States since the 1700s and started blossoming into the cultural center of Baltimore in the 1970s.

My mom has been busy telling my dad all about John Hopkins. I haven’t been there for a while and I don’t remember all that we did.  That is the thing with this illness… it kind of deletes my memory and fogs it.  I hate when that happens because there are so many times that we are talking about things that we have done as a family and I just can’t remember it.  Anyway… my mom told me that there is plenty to do there.  She reminded me of all the things we did when I went with her such as the aquarium, the Hard Rock Café, going shopping, etc. but that was years ago and knowing that we don’t have the expenses anymore that we did at that time and I don’t even have the same energy… I would just be happy sitting alongside the harbor watching the boats with my dad.  I just hope that the weather and my illness permits me to do so because it would be a shame not to be able to enjoy all of that after coming all that way.

I really hope that I get to have some fun on Thursday because it will be great to have something to take my mind off of things.  I am really nervous about Friday because I really don’t want to have the surgery.  We are definitely positive that I have something going on like an obstruction or a colon twist, but we just aren’t sure which one it is.  The doctors are leaning more towards a twist in the colon, but they will need a final CT scan just to confirm it.  This was always the worst fear of everyone because it is very life threatening when you have a twist in the colon.  I mean having an obstruction or a twist in the colon both are extremely bad scenarios and both require surgery, but having a twist in the colon requires immediate surgery right away because it can easily kill you.  Due to my severe gastroparesis, my entire GI system is basically dead and as a result, I have so much air building up.  The air is exerting so much pressure on my organs that it is literally compressing them so much and even shutting them down.  When doctors take x-rays, they can’t believe what they see because it is simply amazing.  They can’t believe all the air that is built up in my abdominal cavity and they are even scared to go inside to do anything because it can easily kill me.  Since my gastroparesis is so horrible and my GI tract is so paralyzed… nothing moves.  As a result, I get so bloated up with air that I literally look at times like I am 9 months pregnant and ready to give birth.  It isn’t me just saying that either, but others can vouch for that too.  I always walk around wishing that someone would be able to ‘pop’ me.

We always knew that the air was compressing my organs and shutting them down.  However, the doctors were always afraid that it would also cause a twist in the colon because like I said before, it would require immediate emergency surgery.  I am extremely nervous to find out if it is indeed a twist because I really don’t want a colostomy bag. There is a very BIG chance that I will have to have one if there is one.

I just don’t know how I am going to be able to deal with it because it is like I am not ‘human’ anymore.  As it is, they want to put tubes in me to ‘feed’ me, tubes to ‘vent’ me (a tube that will open up when needed so that air can be released), as well as a central line because I have been deteriorating so much that they want a line that is easily accessible and my veins are deteriorating and getting hard to access.  I just don’t want a bag in addition to all this as well.  You know?  When is this all going to stop?  It is like I am going to have artificial means all over the place.  I will have tubes going into me, as well as bags to take stuff out of me. I am definitely going to look like a FREAK and it is definitely not the life I want to live.

I really am afraid of getting the colostomy bag and to be honest, I have told my dad that if it comes down to it, I really don’t want one.  However, my dad doesn’t want anything to happen to me and as a result, he keeps telling me “whatever has to be has to be.”  I told my dad that I am going to write all over my abdomen “NO COLOSTOMY” so that they won’t give it to me.  I just hope that it won’t have to result in it.  I know what my dad is saying because if it comes down to life and death… what other choice am I going to have, but I don’t know how I am going to be able to handle this to be honest with you.

The doctors have wanted me in Baltimore earlier this week because of what is happening. They wanted me to go for a CT scan also so that we can clearly see what is going on and know definitely if it is an obstruction or a colon twist, but I have been putting it off. I figured that I would wait until I went to Baltimore because why should I know beforehand.  After all, “no news is good news” and I knew that if I found out before that it would mean that I would have to do something right away.  This way I can pretend that nothing is wrong.  You know?

So I am meeting with the GI team Friday morning and with more doctors later on in the day.  We will see what will happen because I am rapidly deteriorating and need something to work besides just dealing with this obstruction/colon twist. Even if it wasn’t for this surgery, we were still planning on going to Hopkins because we needed something to be done.  I am suffering so much and deteriorating so rapidly that if something is done quickly, I am going to end up dying.  After all, I am only having a BMI 10.8 and my body is shutting down.  Doctors can’t even believe that I am still alive, but I am defying medical odds. Who would think that someone as sick as I am, someone suffering from all that I am suffering with, someone weighing only in the 60s, etc. would still be alive?  I am just proving that I am a fighter and not meant to die.  I am going to win this battle!!

However, I must say things are progressively worsening.  My bloods are continuing to drop and my brain tumor is continuing to worsen.  Since the tumor is on my pituitary gland, which is the master gland of the body, it is playing havoc on it and causing even more problems.  So besides the autonomic dysfunction wreaking havoc on my body in a neurological way, I have this tumor wreaking havoc on my body in an endocrine way.  I can never catch a break.  In addition, the osteonecrosis is also worsening.  Even though the surgeon did remove part of the dead bone when I had the surgery, the osteonecrosis is continuing to spread and I am getting more dead bone than before.  I am extremely uncomfortable because more of the bones are dying.  I can never catch a break.

179704_10100806427400010_1798872640_nI really need to remain calm though because my heart just can’t take it.  Between my bloods dropping and everything else going on… I can easily have cardiac arrest.  I am surprised honestly that with all this stress of everything that it hasn’t happened already.  But… it just proves one thing… I am not going down without a fight!!

I have been on ketamine at home the last few days and it really has changed things.  I only wish I would have discovered this drug beforehand.  I have always gone for the ketamine comas and infusions every other week, but now that I have it at home and take it everyday… it definitely makes a difference.  However, it was an impossible drug to get and I thought I would never be able to find it.  No one carried it!!

Even though the ketamine is an amazing drug, it doesn’t always work.  I am starting to have anxiety over it because I am getting fearful when I take it that it will be a time that it won’t work.  However, when I do take it and it works… what a difference it makes.  The only bad thing is that it is so short-lived.  The ketamine only makes a difference for about an hour or so, but during that hour, I feel like nothing can bother me.  Even though I am feeling the pain, it makes me kind of ‘numb’ to it.  I can’t explain the exact feeling to you but now I understand why it is an illegal drug and why people call it “special K.”  I am really scared though because the doctor is thinking that I am building up a tolerance to the drug already and thinking of increasing it.  I really don’t want to become addicted to it.  In addition, this drug isn’t cheap and the insurance does not cover it. I pay completely out-of-pocket and therefore, it is another expense to add to the pot.

So we are off tomorrow to Maryland.  I just hate not knowing how long we are going for and therefore, we don’t know how long to pack for. I have so much to do because since they are talking ‘surgery,’ most likely I will be down in Maryland for at least a week.  Besides the surgery, they want to put tubes in me to try to ‘feed’ me as well and try to ‘buy’ time as well. I believe that they are going to try some of the surgeries that California was planning and putting the tubes in that they were going to do as well in order to ‘buy’ time as well since I am running so quickly out of time.  I really need something to be done and something done quick if I am going to be able to survive this.

I really hope that Hopkins will be able to help me because first of all I need a hospital on the East coast.  If I have a medical crisis, I can’t really go to any local hospital because they can’t really handle me.  They have already told me that at the most they will get me ‘stabilized,’ but they really can’t handle my situation and as a result, they will have to transfer me.  As a result, the closest hospital that can really help me and have the necessary specialists I need is Hopkins.

I am also hoping that Hopkins will be able to help me because my doctor from California is leaving the hospital.  As a result, I don’t know how what is going to happen because I can’t just go to ‘any’ hospital because even if he goes to another hospital to continue practicing, if the other specialists in the hospital are not familiar with my other conditions, I will not be able to go there because they will not be able to handle me.  So I really need to have another set of doctors since my doctor is leaving.  My doctor has always said for me to go to Hopkins because that is where his mentors are stationed, so I am hoping that I am making the right decision.

I am going to miss my mom and animals so much.  That is one thing that I hate when I have to go to the hospital.  I only wish I could take them with me.  But unfortunately, someone has to stay back to watch the business.    Even though my dad won’t be around to do the actual ‘work,’ at least my mom will be here to answer the phones and pay the bills.  But believe me… we will still take a severe beating because people aren’t going to want to wait around until my dad gets back to get the work done.  When we leave to go away, we lose out on so much work because people don’t want to wait around.  So you can imagine how much money we lose out on.  There is so much more money going out than coming in and we are really suffering.  If my parents ever lost the business because of me, I would really feel horrible and I don’t know how I would live with myself.

So that my dad can hold onto as much work as possible when we are gone and make as much money as possible, he literally works himself as dog.  He usually wakes up at 3AM, out of the house at 4, and then works nonstop until 7PM.  He is no youngster and with all this heat and then all this stress of the business and me not doing so well, I am extremely worried that something is going to happen to him.  He is so overworked that he is so “jumpy!”  He doesn’t mean to be ‘jumpy,’ but that is what happens when you work 7 days a week and you are so overworked.  He can barely keep his eyes open and he can’t even walk straight anymore.  He is barely functioning, but he continues to do this so that we can have as much money as possible to pay for our bills and treatment, as well as so the business survives.  If something ever happened to my dad, I would never be able to live with myself.  That is another reason why I am so glad that we are going away tomorrow. Even though I know we really can’t afford it and my dad can’t really afford to ‘miss out’ on the work, he really needs a ‘break.’  He is working himself ragged and if he doesn’t take a break, I fear something is really going to happen to him.

1000133_10100818670774190_637831190_nYet, he does all this because he knows how important the green dollar is in the world.  Besides the difficulty we are having in paying our bills, we are having an extremely difficult time paying for my medical treatments.  In fact, we can’t even get me all the medical treatments and medications that I need because of how costly they are.  I need to see so many specialists, have surgeries, take medications, etc. and they are all so expensive.  That is why I always plead for help. I have been sick for so long that we can no longer afford the treatment that I need.  Even though we have made so many cuts and even cuts in my treatments as well, it just isn’t enough.  We are really at the bottom of the bucket when it comes to funds and that is why I am always begging for help.  I only wish the media would take on my story and bring attention to it.  I have tried so many ways to get my story known and to try to get help, but unfortunately it hasn’t really been successful.  I know the true key is really to be in the media, but even though I have tried to contact them so that it can happen, we all know “it isn’t what you know it is who you know” an unfortunately we know no one.

Like I said before, we have made so many cuts to and have tried so many avenues to try to pay for treatments for me, but it is never nearly enough.  The bills are just way to great and the treatments that I need are just way too expensive.  I went the other day and sold basically all my jewelry, which was something that I never wanted to do.  But what other choice did I have?  I needed the money. It was only material things anyway and it went for such a better cause. You know?  It just stinks that I had to part with such special items that ranged from jewelry that I wore when I was a baby to nowadays.  Even though I definitely wouldn’t have wore the jewelry that I wore when I was a baby or a little girl, I still would have loved to have kept them as memories and would have loved to give them to my little girl if I ever had one.  But, I figured if I didn’t sell this stuff, I would never get a chance to even have the opportunity to have a little girl in the first place, so I might as well do it.  You know?  I just held onto a few special pieces, but it still saddened me to know I had to sell my jewelry and wished it didn’t have to come down to that.  But oh well… they were only materialistic items anyway!! Life is too precious and hopefully the money I got from them will make me well.  But in reality, I really need much more help than that.  I really need help from others. If only I could get the attention of the media, then I can reach more people.  After all, every $1 makes a difference because it is 1 less that I have to come up with.

Well… I better get going. I have a lot to do and have a busy day ahead of me.  I have to make cookies besides packing and getting things ready.  I can’t leave my brother home without cookies because that is his favorite.  Even when he was away at college, I would pack up boxes with homemade cookies and ship up pounds of cookies.  He just loves them and says that nothing tastes the same as the ones that I make.  I don’t mean to brag but whoever tastes my cookies seem to love them.  Not only do they taste yummy, but also they are always perfectly circular and people always wonder how they get the perfect shape.  My brother calls my cookies “Fallon’s Famous” just like the brand known as “Famous Amos!”  You should see how the cookies get wiped out in my house.  My brother even used to bribe people at college with my cookies. At least I am still good and useful at one thing!

I also have to make up my records for the doctors.  Not only do I have the records that I have culminated from each specialist I have ever seen on my computer, but I also have a summary of my medical history. I have so much going on that it is easier to just print out my medical history that includes my history, treatments, medications that I have taken and currently take, allergies, and symptoms.  My condition is so convoluted that it is easier to write it all on the computer and print it out so that I can just give it to the doctors.  It really saves the doctors plenty of writing because if they would have to write all this stuff done when they examine me, it would take forever.

When I go to a doctor and bring my records, I always end up killing an entire tree basically because it is like bringing a huge book.  Doctors cannot believe how many records I have and since I am so complicated and they aren’t used to hearing my story, they can’t just skim and flip through them.  They really have to go through each page in order to understand me because I am so complex and my condition is so mysterious and unknown.  My dad always kids around with them by saying that it is their “midnight reading.”  You can just imagine how much all the records weigh too and therefore, they are all way too heavy to carry on board.  I usually carry one set on board and put the rest underneath the plane just in case the baggage gets lost.

Well… talk to you soon!



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July 7, 2013


Just wanted to say HI and Missy wants to say HI too.  She is actually right by my side as I write this because she never leaves it anymore especially at night.  In fact, Missy loves the computer and seeing what I am doing on it.  Not only does she lay right next to me and watch exactly what I am doing on it, but she will literally get up and walk right on the computer and keyboard, as well as lay across the keyboard too so that I can’t write either.  I guess she wants the attention too and therefore, she figures that if I am not giving her the attention that she wants… the only way she can get the attention definitely is by laying all over the keys.  I mean… what other choice does she have but to have the attention when she does that because I can’t type or do anything else.  You know?

1044332_10100822732294870_1922629703_nMissy is my best friend.  You really learn who your true friends are when you are sick, and unfortunately all my friends have really walked out of my life when I got sick.  I really don’t have anyone that has remained by my side throughout this besides my parents.  So… to have Missy by my side, it really means a lot to me.  If I didn’t have her, I really don’t know what I would do.  She is the only one I can really ‘count’ on because when the tough gets going… at least she doesn’t run.  In fact, the sicker I get, the more she actually sticks around.  My parents always say how she is my ‘babysitter’ and they can always tell when I am doing worse than usual because Missy alerts them to it because she never leaves my side or there have been times where I have been really suffering and she has even gone and gotten them. It really is something that a cat like her can notify my parents that something is wrong and that they need to come to me.  You know?  She is definitely one of a kind!

Missy is just simply the best.  I don’t really get to do a lot or get out, so I spend a lot of time inside and with her.  In addition, I don’t sleep at all like normal people.  This disease has robbed me of that luxury.  So… since I have spent countless nights awake, it can really get lonely.  Missy has been a great friend in that she spends all the endless nights awake with me.  It really can get lonely every day when you are alone… especially at night, so knowing that I have her by my side really is a BIG help.  We do so much together like watching TV and even going on the computer.  She is such a character.

Missy is one of the huge reasons why I hate going away for treatment.  Of course I can’t really get the necessary treatment that I need around my house and therefore since I am so complicated, I am forced to travel across the country.  I of course can’t bring Missy and therefore, she remains at home with my mom.  Even though I know that my mom will take excellent care of her, I am really nervous about leaving her because I miss her.  Not only do I not like to be separated from her, but also I am afraid of leaving her because I am always afraid of coming home and she not being there.  She is only 9 years old, which is very young for a cat and thank goodness (knock on wood) she has been very healthy)… but you ever know.  If something would happen to her… I don’t know what I would do.  Like I said before… she is my BEST friend and the only one besides my parents who has stuck by me.  I love my dog… don’t get me wrong, as he is my buddy during the day… but no one can compare to my Missy.  She is definitely a character and one-of-a-kind for so many reasons… too many to tell and not bore you about.

ImageHow was your 4th of July?  My 4th was the usual.  I stayed home because I can’t really do anything.  I wish I could have went out and saw some fireworks, but my disease prevents me from doing that.  I did try to help my dad give my dog a bath though. He really needed it and since I can’t give him a bath on my own, I took advantage of my dad being around so that he could help me. Not only do I need my dad to help me because my dog is too heavy to lift up and put in the bath tub, but I can’t really give him a ‘bath’ because it exacerbates my illness. As you can see in the picture, just getting my hand wet caused my whole disease in my left arm to become exacerbated and discolor.  I can’t do anything without causing my disease to worsen.  My disease literally is in control of me instead of me in control of it, which is the way it should be.

Well… I am writing to you because I wanted to update you on all that is happening because I don’t know what is in store for me or what is going to happen, and I didn’t want to leave you in the lurch.  Everything is touch and go right now…so I figured it would be better ‘safe than sorry’ and write to let you know everything that is happening just in case something happened.  This way you are kept abreast of all that is happening because anything can happen at this point. I am just getting really bad.

First off… they have started me on ketamine at home as of last night.  I must say… I don’t know why they waited so long to give me this!  What a difference this has made.  I mean… It really has been a great help, but I only wish it would last longer.  If I sound a little ‘whacky’ in this blog, now you know why… they have me on ketamine.  But, hopefully it won’t mess too much with my thinking.

This ketamine has really been a great help.  The only thing is that it lasts such a short time… like only an hour, if that much.  Currently, I am only allowed to take it two times a day, but the pharmacist said that even though I am on 100 mg per dose, he said that I can go up on it because like I said… it is very fast acting and it doesn’t ‘last.’  I wish it would last because it really makes being able to tolerate and live with things so much easier.  It still is unbearable… don’t get me wrong… but at least it is a bit easier.  I just wish that it would last longer instead of just the side effects lasting so long.  I get such a bad stomachache, headache, etc. from the ketamine but the actual ‘good’ effects of the ketamine only last for less than an hour.  But at least that hour is heaven.  It lets me rest up a bit too.

I can’t believe how long and what it took to finally find the ketamine.  No wonder my doctor said to me “good luck finding it.”  No pharmacy carried it.  I tried all the individual private pharmacies, the chains of pharmacies like RITE-AID and CVS, and even all the Internet pharmacies, but I couldn’t find one that carried it at all.  After searching, I finally found a ‘compounding pharmacy’ that carried it because ‘compounding pharmacies’ actually ‘make’ it for you, but the problem was that this pharmacy was out-of-state and apparently they can’t ship ketamine across states.  So… I had to continue to search out a place in New York.  After some more searching though, I finally found a place.  It isn’t exactly around the corner, but it isn’t too far from me.

ImageI really like this pharmacy because the pharmacists are extremely caring and knowledgeable about their products.  They are willing to help me out in any way possible.  In fact, since they are ‘compounding’ pharmacy and able to make things, they are able and were willing to make my other drugs that I have to go out of the country to get such as my Domperidone. The only problem is of course it is more money because these drugs such as the drugs I get out-of-the country and the ketamine are not covered by health insurance and as a result, I have to pay for it all out-of-pocket.  Therefore, they are of course more money than the place I get it overseas.  But it is nice to know that in an emergency that I can go have it made there in case I run out or need to get that drug in an emergency.

It is also nice to know that they can make it because they can combine all the pills of one medication into one pill.  As I told you in the past that I am having an extremely hard time swallowing pills, and I take over 50 pills.  Some medications though are divided up into like 3 pills each time because they only come in certain milligrams (so it takes like 3 10mg pills to add up to the 30mg that I need). Therefore, since the pharmacist knew that I had problems ‘swallowing’ the pills, he said that he would combine all the three pills to make 1 pill so I wouldn’t have to worry about swallowing something three times. Of course that probably would mean though it would be ‘bigger’ too though.  But it is something to look into though because it would be extremely helpful in swallowing because I wouldn’t have to swallow as much.  But like I said, it would also be more expensive than getting it overseas, so I don’t know if it is an option.  Everything comes with a price and unfortunately everything that seems to be able to ‘help’ me and for the better always comes with a price tag and is too expensive for me to be able to get.  It stinks how my health is being ruined because of this stupid green paper.  I truly wonder at times what it would be like if money didn’t exist in the world.

Well… it is getting closer and closer to Thursday.  We are hoping that I will be able to last until then, but who knows what is going to happen.  We are supposed to be leaving for Baltimore, Maryland because we are going to John Hopkins Medical Center. I was originally just going to go to speak with them regarding my GI issues and neurological condition because I need a GI team and neurological team available on the East coast in case something should happen because if there is an emergency, it would be easier to get to them than to get across country to California or to Mayo.  Since the local hospitals really can’t deal with me because I am so complicated and have even told me that (they said at the most that they would try to stabilize me and then send me off), I have no choice but to go to Hopkins because that is the nearest hospital that is able to handle my complicated situation.  I was also going to see them in hopes that perhaps they might be able to help me because I am deteriorating so much and running out of time.  My doctor’s mentors are there, so my doctor in California was also hoping that perhaps they might be able to help me too.

However, it appears that I will be having emergency surgery when I go there.  It appears in an x-ray that I have a severe obstruction or a colon twist.  They aren’t sure which it is, but they know it is definitely something.  They want me to have another CT scan or something to definitely say what it is, but I haven’t gone for one because I am too scared.  I haven’t gone because ‘no news is good news’ and I know that once I go and find out definitively what it is… it will mean that I will have to attend to the situation immediately.  I really am scared to have to deal with this situation because I really don’t want a colostomy.  I don’t think I am going to be able to handle this.  It is like one of the last things I want.

I really am scared about getting a colostomy.  I know people might say it ‘really is no big deal’ but to me it is a MAJOR deal.  I really can’t deal with it to be honest with you.  Even when my friend’s daughter ended up getting one years ago, I even said to her that I give her a lot of credit because that is something I don’t think I could ever handle.  It is like they are taking my normalcy away completely.  I don’t feel ‘normal’ at all.  I don’t even feel ‘human’ anymore because they want to put tubes in me to ‘feed’ me, tubes in me ‘vent’ me because I can’t get the gas and air out of me because my entire GI system is essentially dead and I build up with all this air and gas that I can’t get out and become really distended, as well as a central line tube because I am getting so bad that they want a way to access my veins easily and in an emergency.  When will the tubes just stop?  I will have to tubes to put stuff in, tubes to take stuff out, etc.  I just don’t know about this.

When I went for the x-ray, it showed this obstruction or colon twist in my mid abdomen. The doctors were always afraid that I would have a twist in my colon because I was getting so much air built up in my abdomen that it was only a matter of time until something like this happened.  My abdomen is so filled up with air that when doctors look at x-rays, they can’t believe what they see.  They are even so afraid to even operate on me because of all the air that is in me. I have so much air in me that it is putting so much pressure on my organs that it is essentially shutting them down.  This ‘air’ is essentially causing my organs to fail and the doctors always told me that it could result in the twist of the colon. They told me that if this ‘twist’ occurred, it would be a real emergency because it would be extremely life threatening.  They told me that it would require emergency surgery and immediate attention because my life would literally be on the line.

So now that I have this x-ray showing this observation, the doctors are really worried about what exactly is happening.  I did speak to the doctors at Hopkins already even though my appointment isn’t until Friday, and they really wanted me to come to the ER already because of this.  They really don’t want me taking the chance of ‘waiting.’  However, like I said before… I am really nervous about having this surgery because I really don’t want a colostomy.  So… I am trying to hold out as long as possible.  The doctors did tell me not to be a ‘martyr’ because it can easily kill me.  They said that if “I should feel any worse, feel anything different, or feel any pain, I need to come to the ER in Baltimore immediately.” All I know is that it is getting worse in the sense I can’t go to the bathroom worse than ever, and when I eat (even the littlest amount) I become much more distended immediately.  Doctors also always told me that if you ever stopped passing below everything including gas… that was the time to worry.  Well… I guess now is the time to worry because I can’t pass gas anymore really, but I still am trying to hold out as much as possible.

In the meantime, the doctor is making arrangements for my arrival since it will most likely require this immediate emergency surgery.  Plus I am not a regular surgical case, as I am extremely complicated and need urgent and special attention. Since I am so complicated and medically unstable, I need more than one anesthesiologist and need a whole special team in the room because if something should happen, I need more than one person able to help. Plus, I need all different specialists in the room during the operation as well because they never know what to expect with me. Any little thing can set something else off… especially since I have that rare neurological disease and autonomic dysfunction.  So all bets are off.  Not only am I nervous, but also so are they.

In addition, I will require ketamine before the surgery, during the surgery, and after the surgery.  Having ketamine around the clock is not an everyday occurrence and therefore, it requires careful planning as well.  I need it because it is really the only medicine out there that can potentially help keep the disease at ‘bay’ and stop the spread of it.  Any traumatic experience can spread this disease and of course surgery is extremely ‘traumatic’ and therefore can spread it BIG time.  It is hoped that through the ketamine around the clock, I will not only be kept comfortable because it will act as a painkiller, but it will also allow the disease not to advance.  At this point especially… we can’t afford for this disease to advance because it is extremely horrendous already and it is everywhere.  I already am suffering so much already and all the time.  I can’t imagine it being any worse nor do I want to.  You know?

I was really nervous because originally we were only supposed to go to Maryland for a few days and then we were supposed to come home because later on that week we were supposed to leave for California to have all those other surgeries. I was planning on having all those other tubes put in when we went to California, as they were trying to ‘buy’ time since I was running out and deteriorating so much.  They were going to try to put that NJ tube in me to try to find that piece in the intestine low enough that is still ‘viable’ and able to accept food by bypassing the entire GI tract, as well as putting in that ‘vent’ tube and central line.  However, now that I will be having that emergency surgery in John Hopkins, I obviously can’t be in 2 places at the same time and therefore, I won’t be able to go to California most likely.

It really complicates things as well by not being able to go to California at that time because my head doctor was supposed to be leaving the hospital right after I was supposed to have my surgeries in California.  So now that I am not able to have those surgeries at that time, I don’t know what is going to happen because my head surgeon will not be there any longer after August.  My head doctor is still not sure completely where he is going or anything, so I don’t know exactly what I am doing.  But, it does look like he is going to be going to Kaiser Permanente, so I guess that would be where I would be heading in mid August if I wanted to remain with my head doc.  I mean… I really want to stay with him because he is one amazing physician. I never met such a great doctor.  He is extremely knowledgeable, an excellent doctor, and even set up a whole successful program in Africa.  Yet, since I am so complicated, I just hope that the other doctors in the other specialist areas can help me because it isn’t Stanford hospital.  You know?  I never heard of the hospital “Kaiser Permanente” and even though I might have an outstanding head GI doc, it doesn’t mean that I will have excellent care overall because of my other complicated conditions.  You know?  So… I am just hoping it will all work out in the end.  I am also hoping that I will make it that long because I am deteriorating so much that pushing it off is not the ‘smartest’ thing to do.  I am really nervous because I am losing weight and such and with surgery… I definitely don’t have the reserves to recover.  Especially with having this ‘emergency surgery,’ it is going to take a lot out of me.  I just hope that I will be able to make it to see him in mid-august to try to ‘buy’ this time because if I was deteriorating before I have this surgery… I can only imagine what this surgery is going to do.

In addition, I was so afraid that we would have no place to stay now that we were going to have to remain in Baltimore longer.  The hotel that we were staying at was completely booked for the days that were originally booked for and I really thought that booking for additional days was going to be an impossible task, especially since it is the summertime and we are staying in the ‘harbor.’  I guess Baltimore is a prime place to be in the summertime… especially the harbor because it was literally impossible to get a hotel.  Plus… they were extremely pricey too.  Thank goodness though that I got a discount because I am going to the hospital though.  But even so… it is still expensive… just not nearly as much as it could’ve been.  Thank goodness for the little things.

So as I said, I was extremely scared that I wouldn’t be able to get the additional days that I needed. I mean… I knew they were completely booked for the days we were already staying and I needed to add on at least an additional 1-½ weeks.  But, after speaking to the manager, he told me that I could add the additional days. What a relief that was.  At least I know that there will be a place for my dad and I to stay… well actually for my dad since I will most likely be in the hospital during that time.

I am really getting nervous about going to the hospital because of the surgery.  I have been to Hopkins one other time, but it was with my mom. I already told my dad that since we are arriving on Thursday and my appointments aren’t until the next day… I want to just spend the day walking around the harbor.  I never get any FUN in my life and the only thing I have in common with that three-letter word is the first letter.  I basically spend my entire life cooped up and isolated in the house because my illness has robbed me of so much including being able to go out. I really can’t do a lot because the weather has to even be ‘perfect’ to even go outside. The slightest difference in the temperature that is tolerable for me can send me in excruciating pain.  I can’t go out in rain because the drops that hit me feel like bricks being dropped on me.  I can’t go out in wind because it is extremely painful.  I even can’t go out in the sun especially when it is a ‘hot’ sun because it burns me.  So essentially I need the perfect weather in order to go out and I need to be extremely careful or else I exacerbate my illness and suffer more.   This disease is HELL.  In fact, the doctors have even stated that if “Hell was a clinical medical condition, it would be known as my disease.”

But like I said… I really want to go to the harbor and just sit around and watch the boats and stuff.  It looks really beautiful and something will be really relaxing.  I just hope that the weather permits me to do so.  I think it will be good for both my dad and me to be able to do that because not only will it ‘relax’ us but it will give us something to do and get our minds clear for our big day that follows.

So… there is so much to do before we leave.  In addition, having surgery and staying longer in Maryland also complicates matters in other ways too.  I was supposed to see the bone doctor in New York because I need to have my bone infusion, but obviously if I am in Maryland, I obviously can’t have that and will have to be postponed.  It literally took me forever to get that appointment and it stinks that I will have to postpone it.

Even though I had the surgery for the osteonecrosis, it is getting worse.  Unfortunately, it is spreading and even though they did remove the dead bone, there is still dead bone in my mouth.  I felt some relief when they did remove the bone initially, but since it is now spreading, I am back to suffering again big time. I only wonder when I see the surgeon again if he is going to operate again to remove more. I only wonder how much more bone he is going to take out.  I honestly can’t wait to see the surgeon because it is hurting me so much.  But of course I have to take care of the surgery in Maryland first and it will have to wait until we return.  I just hope that the osteonecrosis and dead bone can make it that long and not get too much worse in the meantime.  Never a dull moment… you know?

So… that appears all.  So much to do and so little time! Whenever you don’t want something to occur, it always comes in no time. I really need to plan on bringing a lot of stuff to do especially if I am going to be in the hospital.  Any suggestions?  Any suggestions on a good book?  Any good movies to watch?

934067_10100775423297480_1634520740_nI am also hoping that my slippers that my mom ordered me arrive in time.  I needed slippers for the hospital because I can’t wear those hospital socks they give you and I don’t want to walk barefooted on the floor.  Even though I can only wear a shoe on one foot, I really don’t want to walk barefooted!  So my mom ended up buying me new slippers, but given the short notice, I am just hoping that they arrive in time and they also fit.  After all, we only have 3 days really to play around with.  I have the best mom in the world because even though she won’t be able to be there with me, she always makes sure that I am well taken care of.  She always makes sure that I have everything that I need.  It really stinks that my whole family can’t be with me when I go for treatment especially when it is surgery like this.  But someone has to stay back and watch the house, pets, and business.  Plus… we can’t afford to all go either.  So my mom always stays back and ‘holds down the fort.’  It isn’t easy because I would really like for my mom to be there with me too.  But I always speak to her all the time and thank goodness for technology because we “facetime” all the time too so I still get to see her.  I love my mom.  It is just better that my dad goes with me because he is better able to handle things if something ‘bad’ happens whereas my mom definitely doesn’t want to be alone if something should happen and also my dad is better able to take care of me in that he can ‘carry’ me and such whereas my mom can’t.  So.. it is just better after all if my dad goes.  Also… we really need my mom home to pay the bills because if my dad was left to do it, he wouldn’t have the slightest clue what to do.

I am really nervous about having the surgery and like I said before, I really don’t want the colostomy.  I have had countless talks with my dad and told him my wishes, but of course my dad isn’t listening.  He says that ‘whatever needs to be done is going to be done.’  I really don’t want it and since my dad won’t listen to me, I keep saying how I am going to write across my abdomen “NO COLOSTOMY” so that they all know not to give me one in the operating room.  Of course I am only joking, but I really hope that my dad thinks twice before he makes this decision should the need really occur because I really don’t want one.

1011127_10100807013919620_121975462_nMy dad loves me so much and he just wants me to be around.  Everyone knows that if something happened to me, he would never be able to live.  I know he loves me and doesn’t want anything to happen to me, but sometimes I just wish he would just listen to my feelings.  I know he doesn’t want me to intentionally suffer, but sometimes he is just so selfish because he doesn’t want anything to happen to me.  It hurts him so much that he can’t do anything to help me.  He would literally go to the moon and back or cut off his arm if it meant that he could help me by doing that.  I hate it that I can’t get better no matter how much he tries because I know how much it hurts him.  He is one of the major reasons why I keep going and why I don’t give up.  He is the one that keeps me pushing.  In fact, one time when I was thinking about signing the DNR (Do Not Resuscitate) papers, I looked at him and then I couldn’t because I saw how much it would have hurt him.  I love him way too much to hurt him and leave him.  I know how much I mean to him.  I want more than ever to be with him and especially for him to see me become that doctor that I so dream to be.

But of course like I said… getting well and treatments also depend on money and it hurts him so much that he can’t give me all the money in the world to help me get the necessary treatments that I need.  He works so hard to try to get me the treatments, but in reality… it never is going to happen.  It hurts me so much to see him work like a dog because he works 7 days a week just to try to get me the needed treatments and to help pay the bills and yet it isn’t even cutting it.  I am even so afraid that something is going to happen to him because he is no youngster and it isn’t like he is sitting at a desk all that time. His job is all physical and he is up at 3 AM, out the door at 4, and doesn’t come home until 7 PM.  He just works, works, and works with never a day off. IF something ever happened to him, I would never forgive myself.  But he is always willing to put my needs before his own.  He is one amazing dad and best friend.

Therefore, I really need help.  No matter how hard we try to cut it… we just can’t afford the necessary treatment that I need.  Not only do I want to live so that I can achieve the dreams that I have like become that doctor that I want to be so I can help others, but I don’t want to leave my family either.  We are trying every which way to raise money, but nothing really has been successful.  If you have any ideas, please let me know.  In the meantime, please continue to spread the word that I need help and donations are very much welcome.

Also… please say a prayer because at the very least… they are free and can be extremely helpful.   Prayer is an essential tool for healing. Prayers are helpful because they are extremely powerful.  It gives strength and guidance to raise you up from difficult circumstance, as well as it also gives hope, courage, and support.

Well… until next time… thanks for supporting me and encouraging me.



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July 4, 2013


 Happy 4th of July!! Just wanted to wish you a very happy 4th!!  As for me… I am here tonight hoping and wishing that the pain will pass and hoping that something will just ‘knock’ me out.  I am doing worse than usual because unfortunately I had a little accident today and it really has cost me big time.  The pain and discomfort that I have been experiencing lately have been so bad that I have been wondering that if it is even worth being here.  It has been so bad that I have literally just wanted to ‘give up!’ Now with this added pain and discomfort, it is really pushing my buttons.  However, even though I have wanted so much to give up and have contemplated it, I always end up continuing to push forward and continue to push onward because I realize how important I am to the world thanks to all your support and encouragement as well as the huge love, support, and encouragement that I receive from my family.  I know that my dad would never be able to live without me and therefore, I keep pushing onward… hoping for a day that I will be helped and without pain.  After all, like I said before… I have so much to still give to the world and yet experience.  I am going to become a doctor so that I can help others and they don’t have to suffer the same fate that I have been suffering.

 Well… like I said…  I am really doing horrible.  Unfortunately, I am doing worse than ever because I had that ‘ car accident’ in May.  Ever since that time… it has been all downhill. My body is just continuing to deteriorate at a rate that I can’t even keep up with anymore.  My body is just literally falling apart. 

 Ever since accident, the pain has been out of this world… even more than before.  I didn’t even think that was possible.  I am literally climbing the walls and nothing that I do is helping. I am maxing out on all my medications and even popping Tylenol like candy because it is all that I can do in hopes that it might help with the pain since I can’t take anymore of my ‘pain’ medications.  I am only hoping that nothing will happen to my liver with all the Tylenol that I am taking but to be honest… there is no other choice.  Something has to be done because I won’t be able to even exist if I didn’t take the Tylenol.

 Like I just said… I am really in a lot of pain and in worse shape than ever.  Ever since the accident, my body is just continuing to just deteriorate. Lately, my right knee has been giving me a lot of problems. I felt a ‘rip’ when I had the accident and I was hoping that it was nothing with nothing especially since it was my better of the two legs and depended on that leg to walk on since I am on crutches and needed that leg to lean on.  There is no way I can put pressure on the other leg so I was hoping that it was ‘nothing with nothing’ because to be honest… I can’t afford anything to really happen to this leg that would cause me to not to be able to walk on it because even though I have this disease in that leg as well, I continue to push through it because I know without walking on this leg… I have no other leg to walk on.  I know that it would only mean being in a wheelchair, which is something I have been fighting.  So I was just hoping that what I felt in the accident wasn’t really something ‘serious’ and would just go away.  I was hoping it was just a ‘bruise,’ but apparently it isn’t. 

 I never got my right knee checked out to see exactly if it was a ‘tear’ or something else was wrong with it because you know the saying… “What you don’t know can’t hurt you.”  I really didn’t want to know because I figured that I would just pretend that there was nothing serious wrong and this way I would continue like I always did because I couldn’t do anything really to it anyway because it would mean not being able to ‘walk.’  I also thought that perhaps I would be able to push through it and whatever it was would heal by on its own.  But apparently it didn’t, and it only has gotten worse. 

 The knee is so bad now that I can barely walk on it.  It is at the point where something needs to be done because the pain is excruciating and continuing to worsen.  I am really thinking that it is going to need medical attention and something to be done, which scares me because like I said… this is the leg I depend on because I am on crutches.  But… I think it is at the point that there is no other way.  So… I think that I will be making an appointment with the Orthopedist on Friday for this knee.  Hopefully it isn’t anything serious, but we will see.  What a disaster!

 In addition, I have been suffering from back spasms ever since the accident as well!!  However, even though I thought that this would get better within time, it has only worsened as well too.  I can barely move my upper body or breathe without being in so much pain.  It is bad enough that moving causes me so much pain that I want to climb the walls, but now it hurts just to breathe. I can never catch a break!  Something has to be done because to be honest… I don’t know how much more I can take!!

 I haven’t been able to do anything since the accident except lay on the couch really because the pain throughout my body has been worse than ever.  Whereas before I was able to get off the couch and do stuff minimally… it has really become even worse.  Every time I think it can’t possibly get any worse… it somehow can.  I just wish that it would just disappear because I don’t know how much more of this I can take.  I lay around crying and screaming in pain because that is all that I can do.  I plead with my dad to “please help me” but unfortunately there is nothing that he can do.  I know his hands are tied and if there was anything remotely possible he could do… he would definitely do it. It pains him so much that no matter how much he would love to help me or even take this disease away from me for even a minute… he can’t do any of it.  All my dad can say is “Do you want me to take you to the hospital” even though he knows that isn’t really an option because there really isn’t a hospital in the local area that can help me and it would mean traveling to get to a hospital that could help me, as well as it costing our family lots of money too, which is money we don’t have!!  Plus… in the end… going to the hospital wouldn’t even ‘help’ because the real help is way too expensive and can’t be done by just checking into a hospital and going trough an emergency room.  To really ‘help,’ I would need a huge intensive ketamine coma, as well as a multi-organ visceral transplant, which are both two radical and expensive procedures that need to be planned in advance.  All the other treatments are just ways of hopefully ‘buying’ me time and hopefully to make me more comfortable.

 ImageWith all that I am suffering, I have been on every medication out there and nothing has really helped me.  However, there has been one medication that the doctor has prescribed known as nasal ketamine spray, which the doctor has given me at my last doctor’s appointment in hopes that it might help me. Since ketamine is basically the only medicine that really helps, he is hoping that the nasal ketamine spray would help make a difference even though it is no where near the dose I get when I get it through IV.  But… it is definitely worth a try.  He is hoping that spraying ketamine nasally might help give me the little relief that would make such a difference.  The only problem is that there really is no place to fill it. 

 Ketamine is the one drug that is so difficult to fill.  When I say that I am on ‘ketamine,’ no one can believe that I am on it because it is the same drug that they give to cats and dogs to put them to sleep, as well as also known as a horse tranquilizer.  Ketamine is also the street drug known as ‘special K’ and is used because can cause dream-like states and hallucinations. Users report sensations ranging from a pleasant feeling of floating to being separated from their bodies. Some ketamine experiences involve a terrifying feeling of almost complete sensory detachment that is likened to a near-death experience. These experiences, similar to a “bad trip” on LSD, are called the “K-hole.” 

 However, it is a drug that is extremely hard to get.  It appears no pharmacies even carry it. In fact when the doctor gave me the prescription, he even told me “good luck getting it filled” because he knew how difficult it was to getting it. I tried all the local pharmacies in my area from the private individual ones to the huge chains like CVS, Rite-Aid, Duane Reade, etc.  I even checked online to see if I could find a pharmacy on the Internet that could fill it.  You know it is difficult to fill when you can’t even find a pharmacy on the Internet to do it.  But after careful looking, I finally found a compounding pharmacy that will do it for me. It took me awhile to find one because not all compounding pharmacies even do it and then when I did find one I had to find one that was in New York because even though it could be ‘shipped,’ the drug is not allowed to cross state lines.  But at least I finally found a place that has the drug and can compound the medication for me. So… I will hopefully be getting it Friday or Saturday. 

 The only bad part about this is that like always… nothing comes without paying a price.  I never get any ‘good’ news without it coming along with ‘bad’ news.  Even though I am getting the ketamine, which is definitely good news, I was told that of course my health insurance will not cover this much-needed drug.  Therefore, it means that in order for me to get this necessary drug that I desperately need, I will have to pay completely out-of-pocket and it definitely isn’t cheap.  We are having a hard enough time paying for treatment as it is.  We can barely afford the mortgage and having trouble paying that.  We are having trouble even putting food on the table.  The bills are just adding up.  And now we have one more bill to worry about and add to the pile!!  But this is just a something that is a necessity and we need to find a way of paying for it.  So this just shows how much we need help from others.  We need donations so desperately because my life depends on it.  All my treatments are so costly and we cannot afford it. Not only can we not afford the surgeries, traveling expense, hospitalizations, doctors, etc. but we can’t afford the medications that I desperately need as well.  Everything is just so costly and just adds up. 

 I kind of had a feeling that we were going to have to pay out-of-pocket for the ketamine.  But I was hoping that I would be wrong.  So I am hoping that I will receive some donations from people that will be able to help us out.  I really need help from others.  It is more important than ever because I am really getting sicker than ever and without the help of others, I fear that I am not going to be able to continue receiving the necessary medication or treatments that I need in order to continue my battle.

 Donations are more important than ever right now… especially since I am deteriorating.  We have a lot of upcoming treatments planned and they are costly.  The doctors are saying that unless I receive treatment soon, my body isn’t going to make it because it is just shutting down.  So I am pleading with others to please donate.  I have made a video in hopes that it will reach out to people and hopefully bring in donations.  I know I have tried other mechanisms to raise money like Facebook, writing to the media, hanging posters, etc. but nothing really has worked.  I figured that video is more important than readings and if people can see exactly what I am going through, and then perhaps people would be more inclined to “help.” I was also hoping that the media would be able to pick up on my story and possibly be able to help me out as well because that would definitely be the biggest ticket in getting help with the donations that I need.  The more people that are aware of my story… the better I will be and what better way is there then through the media. 

 I have been wanting to do a video for a while and have seen that I had a program on my computer called “iMovie” for a while.  However, I was always intimidated by it because it looked so difficult to use.  But with getting worse and not being able to really move and do anything, I figured that learning how to use the program would give me something to do and it would also possibly take my mind off of things.   So that is exactly what I did!! It was so much fun to use this program and I made 2 videos up about my illness and asking for help.  I must say that I did have so much fun and I really plan on doing more because of how much I enjoyed making it.  But in the meantime, I am really hoping that these videos will reach out to people and really help me.  If you want to check them out, please feel free to at: http://youtu.be/aDxDpsMck4Q and http://youtu.be/eScaKUcIcNk.  Feel free to spread these sites as well. I think that the first video is the best.  What do you think?

 People think that I am not doing all that I could be doing to get well.  People think that since modern medicine has come a long way that if I am still suffering, it is because I must not be doing what their doctor is telling them to do or I must not be trying very hard to get well!   After all, we are a world that is accustomed to popping some pills or vitamins and we are back in the race, feeling like our determination could defeat any viral army. After all, we did not stay sick for long because we acted, had a positive attitude and by gosh “we were not going to let any illness keep us down!”  However, the truth is that with me… many times the doctors do not even know what to do.   In addition, even though there have been advancements in medicine… the truth is that the advancements have only allowed people to “live” with the illnesses.  Even though people are being kept alive with drugs, surgeries and treatments, these improvements have not been sufficient to cure them.

 Most people don’t really understand my illness or how bad I am suffering because when they do see me, I don’t look as ‘sick’ as I am. I try to always put on that façade in front of people because I don’t need people feeling ‘sorry’ for me and I truly believe that if you ‘look good’ you ‘feel good.’  It is just plain miserable to be sick, in pain and debilitated – nobody enjoys it.  Therefore, I try not to focus on it because I try to escape it as much as possible and I know that no one really wants to hear it. 

 Often people think I am either exaggerating or not doing something about being sick when they come across me. After all, when they got sick, they got some rest, took some medication and were soon back on their feet. Moreover, when they were sick, they were pale and droopy, but I often look “perfectly normal” besides being on crutches and too thin.  The truth is, most conditions cannot be seen with the naked eye, but nevertheless are persistently keeping the person from enjoying life the way they once knew.   For instance, a person can battle extreme fatigue and/or cognitive impairments on the inside, even though they may   appear healthy and well on the outside. Just the same, a person can have horrible pain and/or dizziness, despite the fact that to the onlooker they may look strong and able.  Therefore, no one really understands what I am truly undergoing and how horribly I am in pain and how much my body is shutting down because I put up such a ‘front.’  People like me that are living with an illness do not want to give up! I am always making an effort to laugh, smile, look my best and enjoy life, even though they know they will pay dearly for it. II do this all so that I can try to make my illness seem invisible to the rest of the world and not make others suffer with me.  I even try to do this with my family because I don’t want them to see me suffer.  As long as they see me smiling, they don’t know exactly how much I am really suffering in the inside because it hurts them so much to see me suffer. 

 I really need as much help as I can get because I have a lot of upcoming plans and it will be extremely costly.  Not only do I need help paying for my current treatments, but also like I said before… I need help paying for the ketamine that I plan on receiving in the next few days, as well as the upcoming surgeries that are happening.  I am also going to be having the intensive ketamine coma soon and need the funds for that as well.  Everything just keeps adding up on top of my usual copayments, medications, doctors, etc.

 Like I said, I have upcoming surgeries.  I am supposed to be leaving Thursday (1 week from today) for John Hopkins Medical Center. Yup… dad and I are off again!!  I am really nervous because I don’t know what to expect.  We are going there because it is one of the top GI centers on the East coast.  I also need emergency surgery because they know I have an obstruction in my colon.  However, they aren’t sure if it is an obstruction or a colon twist.  Doctors were always fearful that I would end up getting a colon twist because I was filling up with so much air in me.  In fact, when I had x-rays taken, there was so much air in me that the doctors could see so much air pockets that were compressing the organs and shutting them down.  Some doctors were even fearful to do anything because they feared that if I ever needed surgery that something horrible would happen from all that air buildup and extra pressure that was being exerted in me.   Doctors were really amazed by the x-rays when they saw them and how much air would be in me.  However, they also said that this air buildup not only was shutting down my organs because they were compressing them (even my heart), but they were scared that it was going to lead to a colon twist.  If that should happen, I would need surgery immediately because I could easily die from a colon twist.

 I had the x-ray taken at the MAYO CLINIC and it did show either a obstruction or colon twist.  They were leaning more towards a colon twist, but they weren’t completely sure.  They needed a follow-up CT scan to confirm it, but I haven’t had one done yet.  I am really nervous about having this obstruction/colon twist because I am so scared I am going to end up with a colostomy.  This is the last thing that I want.  So even though I have been suffering so much and know how much of an emergency this is, I really am in no hurry to have the CT scan because no news is good news.  You know?  Once I know for sure that it is an obstruction/colon twist, I will have no other choice but to go for the emergency surgery. 

 Plus… I can’t have the surgery at any hospital.  I am so medically complicated and my situation is so difficult that I really need to be at a top-notch hospital that can deal with not only this surgery but also my overall situation.  Even though I might have a top-notch surgeon my bowels, I still would need doctors that would be able to handle my other conditions and would need specialists familiar with my other conditions such as my neurological disease, autonomic dysfunction, pituitary brain tumor, osteonecrosis, etc. because one thing sets off the other like the domino theory.  Going for surgery can easily harm and kill me because not only is the surgery risky in itself, but also I am in no condition for surgery either.  I am medically unstable because of my bloods and weight and how my organs are functioning, as well because I suffer from these other conditions as well. Any little surgery is a major surgery because of how hypersensitive I am and because of how medically complicating I am.  Having just the autonomic dysfunction alone complicates things like you wouldn’t believe because it sets things into motion by just the littlest things.  When I go for surgery, I am such a big risk and anything can happen that I literally need a huge team in the OR itself.  I usually have like 4 anesthesiologists alone.

 I am really nervous because I am scared I am going to have to get a colostomy.  I really don’t know if this is something I am going to be able to handle. I have had tubes in the past and having a colostomy is definitely worse.  I have even told my friend’s daughter when she had a colostomy bag that “I give her a lot of credit because I don’t know how I would be able to handle it.” 

 I can’t believe how they are planning on making me so inhuman. I feel like they are just taking me apart and making me so abnormal just so I can exist.  When I go to California, they are planning on putting tubes in me to ‘feed’ me so that they can buy time.  The tube will go into my intestine.  They are hoping that they will be able to drag a tube from my nose, through my stomach, and into my intestine and find a small viable piece and the end so that I would be able to get some food since I weigh so little and my BMI is only 10.8.  Since my GI tract is essentially dead, they are hoping that by dragging this tube through to the end of the intestines that they will find that small viable piece.  Then besides that tube, they are planning on putting a tube in me that will ‘vent’ me.  I can’t move the gas that builds up in me and as a result, I get extremely distended and uncomfortable.  I literally blow up and I look and feel like I am 9 months pregnant and ready to give birth.  Therefore, they are putting in a tube to ‘vent’ me so when I get this buildup, I will be able to open the tube up and the air will e able to come out.  Finally, they are planning on putting in a PICC line and central line because this way the doctors will have better access to my veins since I am deteriorating.  Since I am worsening, they feel it would be better to have this direct central access because my veins aren’t holding up anymore like they should be and if something should happen, they would be able to access me immediately.  So… between all those tubes and then the colostomy on top of it… I just don’t feel like a ‘person’ anymore.  What kind of life is that?

 Sometimes I wonder if that is really a life that I want to live.  Sometimes I wonder if it isn’t just better to enjoy whatever time I have left and be as ‘normal’ as possible.  But, there is no guarantee that a colostomy bag is going to happen and I am praying and hoping that all this worrying will be for nothing because it won’t have to happen.

 Like I said before… we are heading down to Baltimore, Maryland on Thursday because we are going to John Hopkins Medical Center.  I am nervous because like I said… I don’t know if they are going to do the emergency surgery when we go there or they are going to just wait until I get to California because we are supposed to go to California shortly after.  We were supposed to leave for California on the 21st, but of course if I end up having the emergency surgery at Hopkins, we don’t know if that trip to California will end up even being possible because of how close it is afterwards.  So… I guess we will have to see what happens. 

 I am really nervous about missing the trip to California too because right after we go to California, my head GI doctor is leaving Stanford.  Therefore, if I don’t have the necessary surgeries that we have planned in California during that time, I don’t know what is going to happen because my doctor won’t be there anymore.  We asked my doctor where he will be going because he said that he has been offered other jobs at other hospitals, but he hasn’t told us where he is going because he said that he hasn’t made up his mind.  I am scared that possibly he either might not be practicing for awhile and might be taking some time off before resuming his career at another hospital because he still doesn’t know where he is heading and as of August 1st he is no longer at Stanford, or I am scared that possibly he is going back to Africa since that is where he is originally from.  He is a phenomenal GI doc and very well known.  He set up this entire GI program in Africa that is extremely successful.  Plus, I also have to go to a hospital that can handle my overall condition like I explained earlier.  I need to go to a hospital that can give me ketamine infusions if needed, etc.  Not many hospitals are knowledgeable about my other conditions and therefore, if he goes to one of those hospitals that aren’t familiar with my other conditions, I don’t know if it will be smart or possible to go with him to that hospital.  You know?

 So… I guess we will have to see what happens!  I am also nervous about what is going to happen because we are only booked at the hotel in Maryland for a few days and if I end up needing a lot more days because of the surgery and such… I don’t know if it will be possible because they are extremely booked.  I guess Baltimore is a very popular place because it is the summertime.  I know that it is definitely expensive because the hotel is costing an arm and a leg.  Thank goodness the manager is giving us a break.

 ImageLike I said before… we are leaving Thursday for Baltimore, but the appointment with the GI team is Friday.  We are also meeting with the team at Hopkins because we need a team on the East coast in case something should happen to me.  Hopkins would be the closest hospital that could handle me and therefore, even though I might be able to go to Mayo Clinic or Stanford (well up to this point until my GI doc leaves), if there is an emergency… Hopkins would be the place to go.  Anyway… since we are going to be there a day early, I am planning on hopefully walking around the harbor with my dad. Even though I hate going away to hospitals and going for treatments because I hate the traveling and such, at the very least I get to spend time with my dad.  I love being with him and it is really nice that we get this bonding time.  My dad and I really have an amazing relationship.  Without my dad… I definitely wouldn’t be here.  He is the reason that I am here.  He is not only my dad, but also my best friend, my knight shining armor, and the person I admire most.  He is really the best. 

 My dad has really given up a lot for me and it terrifies me that something will happen to him.  He is under tremendous pressure because of what is happening to me, as well as the financial pressure of the business.  Since I am so very sick… he has been the one traveling with me and as a result, he has to take time away from work.  When he doesn’t work, of course that means that the business doesn’t function the way it should and we don’t make an income.  There is no one really to do the work that comes in and people don’t want to wait for my dad to come back.  Therefore, we end up on losing out on so much work even though my mom stays behind to try to manage the office because even though she is there to answer the phones and such, there is really no one to do the ‘work’ and no one really wants to wait around for someone to come to their house… you know?  So my dad tries to make whatever money when we are home and works himself like a dog.  He is up at 3 AM, out the door by 4 AM and not home until 7 PM every day of the week except Sundays.  Even though he may not work all those hours though on a Sunday, he still is up at that hour to work though and still puts in a workday on that day though.  My dad is no youngster and it really scares me because he gets no ‘rest.’ His job is all physical and he never rests.  If something would happen to him, I would never forgive him.

 Living with a debilitating condition can be very challenging! I struggle with getting through a day, not being able to work at all, trying to clean the house or make a meal, shopping for simple things such as groceries, being faced with medical bills, doctor appointments, insurance claims, medications or even just having the energy to go out.  Yet, despite it all… my family has been there for me.   My family really have given up their lives for me, as I can’t remember the last time we all have went on a vacation, went to a show, went out and did something ‘fun’, went out to a restaurant for a meal, etc.  All my family does is go to work and then come home to sit in this house because I cannot do many things.  So instead of just leaving and going about and doing things by themselves without me, they have given their lives up to be with me.  I can’t thank them enough for not going on and not including me on things, but I must say that I am still upset because I know how much it hurts them that they had to give up so much of their lives.  You only live once and to not to be able to do anything ‘fun’ and to be only stuck in this house besides when they go to work… it just isn’t fair to them.

 No matter how many times my family has told me that I am not a ‘burden’ on them… I completely feel that I am.  No matter how many times my family says they love me and want to help me get through this and that they don’t mind… no matter how many times they say they want me living with them and want to go with me to the doctor or hospital, or that they don’t mind helping me walk with crutches because there is a risk of falling due to weakness or a black out… no matter what they say, I still feel like a burden.  I feel guilty having them always have to care for me, have to carry things for me, having them stop what they are doing because I need something.  Living with my illness makes me upset because makes you sad because I see how your family is stressed from making phone calls for you because your medications make you forget important things and you can’t think clearly or make sense. I feel ashamed when I do try to help but don’t do as good of a job at whatever it may be, whether calling to make a doctor appointment or something simple like putting your clothes away.  Living with RSD makes me fragile, not only physically but emotionally as well. When someone gets mad at me for whatever it is that I did or didn’t do, it hurts… More than it should.  People mistake this as self pity, but it’s not.  What makes me feel bad isn’t that I have this illness but more so that that everyone else has to cope with it too.   My disease has taken not only my life, but also the lives of my family.  When you have my disease it is like not being able to live.

 That being said… my parents’ birthdays are approaching and I really want to do something special for them.  They are both going to be turning 60 and it is really a milestone in their lives and they should definitely celebrate it.  My mom’s birthday is August 9th and my dad’s birthday is the following month on September 9th.  They have given up so much for me that I really want to do something special for them.  However, between the finances and what I am capable of doing… I really am strapped.  If you have any suggestions, please let me know.  It really hurts me that I can’t give them what they deserve.

 Well… I guess I better get going.  It is getting late and I am going to rest.  I hope you enjoy the 4th of July.  I would do anything watch the fireworks.  That used to be one of my favorite times of the year.  I remember when I used to make my grandparents and parents drive all over the place when I was younger just to see the fireworks.  I also remember when I was younger how my brother used to get a whole box of his own fireworks and he used to set them off in the street… which gave my entire block and me an amazing show!!  Not only would we have the firework display that my brother did, but we used to hold sparklers and dance around on the outside with them making all these different designs as we twirled them in the air. I remember loving to watch the colors, sparks, and other effects that they emitted.  Moreover, I remember my mom always buying us those ‘snap-pops.’  You could throw one of these novelty explosive snap pops on the ground, or snap them with your fingers, and the snaps made a popping noise. I used to go crazy over those pops and my mom would load up on boxes of them for the fourth.  It was the best.  Gosh… those were the good times.  Those were the times before I was sick.  I would do anything to go back to those times.  Now I don’t even think I would even be able to withstand holding a sparkler because it would clearly burn me because of the extreme hypersensitivity that I have.  Plus my hands aren’t even that stable to hold it or strong enough.  

ImageNow I am just forced to watching the fireworks on TV and even that will probably be impossible.  The Macys Fireworks show happens to be the same time that I take my medication and I can’t afford not to take it at that time.  However, when I do take my medication, they end up knocking me out for about 30 minutes afterwards.  It is the only ‘rest’ I get because once I wake up… I am up for the rest of the night.  So… I bet I probably will miss out on watching those magnificent fireworks too.  I guess there is always a DVR for recording though even though it isn’t the same as watching it LIVE. 

Anyway… thanks again for all your continued support and encouragement.  When I know more information, I will let you know.  Please continue to pray for me because your prayers are much needed.  Please spread the word of my videos as well because the more people that know about it on YouTube, the better I am.  Please also spread the word of my website because each $1 that I raise is one less that I have to come up with and makes a HUGE difference.  Please help because my life depends on it!



http://youtu.be/aDxDpsMck4Q and http://youtu.be/eScaKUcIcNk 





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