FALLON MIRSKY

Please help SAVE MY LIFE!

November 25, 2015

12240930_10101737120548480_1172554018342192005_oHi-

 

As tomorrow is Thanksgiving and a lot has been happening lately, I figured that it would be a great time to write a little update as to what is happening, as well as to tell you how thankful I am that I have all of you to support, encourage, and pray for me because I definitely wouldn’t have made it this far and long without the help from you.  You really have made a great difference in my life and I can’t thank you enough for it.  Even though I am dying, dealing with overwhelming pain each and everyday, and this illness has robbed every single joy basically that a human can have, I am still extremely thankful this holiday season for being able to see another year and for all the people that have cared for me and loved me.

 

Whether it has been by saying a prayer, donating, spreading my links/messages, or even just by reading my updates, I want to say “thank you” because you have shown that you ‘cared’ for me.  It shows that I am still important to the world and I am still needed even though I am not really ‘contributing’ to society and making a difference as I had planned by working and having a career or anything.  My illness has really forced me to have limitations, but people have really made me feel “wanted” and “needed.”

 

I only hope and wish that I will be around to see another year.  I can’t remember the last time my family officially celebrated a holiday, but just being together on Thanksgiving is enough for me.  So many people have these extravagant social events or dinners during the holiday season, but unfortunately just like we haven’t been on a vacation in many years… the same came be said about celebrating a holiday.  Unfortunately, everything costs money and since my illness is incredibly expensive and costly, we really don’t have the funds to celebrate the holidays like we once did.  But we don’t need to have the extravagant affairs or gifts because just being together as a family and knowing that we are all together for another year is enough for us.  Yes, it would be nice to celebrate the holidays like everyone else does, but maybe when I am better we will then be able to, but right now our money and focus is going towards trying to get me well, which is more important because without that I won’t be around to celebrate these holidays next year.

 

I am not going to lie, but I do feel incredibly bad for my family for what I have put them through.  They certainly don’t deserve this kind of life.  My parents have given up way too much for me and I only wish they didn’t have to.  I wish they could be like other people their age and be enjoying their lives because they are at the point where they should be because they have worked all their lives that now they should be ‘enjoying’ themselves.  Yet, instead they are working harder than ever and not even able to enjoy all the money that they worked for all their lives because it has been all put towards my illness.  My parents claim that they don’t mind and would do anything to get me well, but I really feel badly and only wish that I could make it better for them.

 

Well… in a few days we are hopefully off to the Cleveland Clinic.  We are still extremely short on funds, so it is still not 100% that we are going.  But, we really need to get there because I am really going downhill and downhill fast.

 

So many things have been happening especially lately.  My stomach and entire GI system is really getting worse and the pains that I am getting in my GI system have been excruciating.  It is like I am having a baby. I get these pains that continue to build over the course of 2 hours and then slowly dissipate. When these pains happen, they are so debilitating and painful that all I can do is curl up in the fetal position and cry. I just moan and cry and pray that it will end soon, as well as beg someone to just ‘knock me out’ because of how much pain I am in.  Of course no matter how much I beg though for someone to do that to me… no one does.  However, whereas these pains used to only come only once a day, they are coming so frequently now and I can’t even catch a break.

 

I have also been incredibly thirsty. No matter what I drink, I just can’t quench my thirst.  I drink at least 6 powerades a day, which come out to over 120 ounces.  I even get IV twice a week when I go for the procedure to clean out my colon and when I go for the ketamine.  Yet, when I went for bloods, the results have shown that I am completely dehydrated.  I am just not absorbing.

 

When I went for the procedure to clean out my colon, the doctor actually saw what was happening.  He said that I am filled up with so much fluid in my stomach and abdomen because I am just not absorbing.  I constantly look like I am 9-months pregnant because of all the fluid and I even have trouble breathing because it is leaking into my lungs from backing up.  The doctor said that he wanted to try to drain some of the fluid out, but he wasn’t able to because there was too much debris in my colon because it is completely paralyzed and can’t move through.  In fact, today when I went for the procedure, he said it was the worst he ever saw me.  He said I had so much debris that I kept clogging up his channels.

 

Something is really up with me though because my bloods have been really bad lately.  Doctors are really worried about me because the bloods have shown how my organs are failing and it has also pointed to how I have a mega infection somewhere.

 

When I came out of the hospital from the surgery on my hip, femur, and pelvis, I had a stage 4 bed sore.  That is an extremely dangerous thing to have and the doctors are now worried that I developed osteomyelitis from it.  If I did, it can be extremely life threatening.  I have been getting really bad bone pain and when I had my previous bloodwork, I had a very elevated white blood cell count, which showed that there was definitely an infection somewhere.  So… everyone is freaking out because that further points to osteomyelitis, which is a bone infection.

 

If it is a bone infection, it is extremely dangerous and needs to be taken care of ASAP.  If it isn’t treated immediately, it can be life-threatening and amputation can have to happen as well.  So I am heading for a CT scan on Friday to see what is happening within the bone. Never a dull moment! I wanted to go sooner for this scan but unfortunately I didn’t have the funds for it.  Even though we are covered for this procedure under the insurance, we still have a copayment of $100 just for this scan alone.  Gosh… this illness just has us paying constantly.

 

So I will be going Friday and I will let you know the results.  Fingers crossed that even though we know I have an infection somewhere that everything will turn out to be negative in terms of being a ‘bone infection!’ I just hope that I get the results right away because it is Friday and I know I won’t hear anything over the weekend and then we are supposed to be leaving first thing Monday morning for Cleveland.

 

Cleveland is quickly approaching and I am both excited and nervous.  My dad will be coming with me along with the Scoobster.  It will be Scoobster’s first plane ride so it will definitely be an interesting ride.  Gosh… if I didn’t have the Scoobster, I don’t know where I would be.  I just love him to death, but I don’t know if I am being fair to him.  Sometimes I wonder if he is best off living with someone else because I can’t do many things with him like other people can.  But everyone tells me how he has a bond with me and how he looks for me all the time.

 

To be frank, Scooby is my life.  I love him to the moon and back.  He is so well trained and behaves so well.  People can’t believe that he is only 8 months old.  When we go out he never barks and will literally sit with me and not bother anyone.  He just loves to sit on my lap. He is just the best.  He looks just like a real life teddy bear.  If I didn’t know at times he was ‘real’, I wouldn’t think he was a live dog. He has the most expressive eyes and I never saw another dog that have eyes like that.

 

Well… I guess that is about it for right now. I have ketamine in a few hours so I better go and rest.  I just wanted to wish you a very Happy Thanksgiving and want to thank you again for all your support and encouragement and prayers.  Thanks for being there to listen when I needed a shoulder to lean on.   Please continue to do this and please continue to spread my website because I really need treatment and I can’t afford it without help from others.  I really need as much help as possible so I can get to Cleveland and so I can get the help I need even in New York.

 

The holidays are coming up and miracles are possible during the holiday season.  Maybe I’ll get my miracle of getting well.  I just want my life back.  That would be the BEST gift ever!!

 

Thanks again for everything.

 

  • Fallon
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November 18, 2015

11220930_10101732141441650_3052077053998190576_nHi-

 

Well less than 2 weeks and counting until we are hopefully off to the Cleveland Clinic in Ohio.  When I say “we” … I am talking about Dad, me and of course the Scoopster!!  Can’t forget about him!   Am really suffering and it can’t come soon enough.  I just really hope that we are going to be able to go because we are really strapped on funds.

 

I really need your help in order to make this trip happen.  I have less than 2 weeks and we really need all the donations that we can receive because we really don’t have the funds to go.  My illness is extremely costly and we can’t even afford the medical costs of the treatments, medications and doctor appointments just in New York.  However, since I suffer from such a complicated and rare illness, I need to travel across the country and see specialists that cost additional funds, which we of course don’t have the money for because it really takes a huge toll on the finances because between the airfare, traveling expenses, living arrangements, doctor appts, treatment, etc. it is extremely expensive.

 

Not only were we having a very difficult time paying for my medical treatment before I broke my hip/femur/pelvis, but when I had this accident, it really took a huge toll on our finances.  We had to pay for so many unexpected treatments and expenses that cost us way out of our budget. So many things had to be paid for out-of-pocket including a homecare nurse because it took until just recently to be approved for a nurse to be able to come to my home under the insurance.  Gosh… isn’t it amazing that you pay so much for insurance and yet when you need it… it either takes forever to get the approval for things and it is like pulling teeth (so you end up paying so much out-of-pocket in the interim) or it doesn’t help at all.

 

So if there is anything that you can do to help us receive donations so that I can receive medical treatment, as well as help me get to the Cleveland Clinic in 2 weeks, I would really appreciate it. Please pray that everything will be ok and please pass the link for my donation page along.  I will appreciate any donation whatsoever, as even $1 is one less dollar than I have to come up with.  I know I sound like a broken record already, but it is just that I am really suffering and need so much urgent medical treatment, medications, and to see doctors, but I cannot receive or do any of it without help.  I am really going downhill fast (not to mention all the physical and emotional suffering I am enduring on a daily basis) and I really don’t want to do this anymore nor do I want to die, which will be the end result if I don’t get the help that I desperately need.  So please help me and pass this link along: www.gofundme.com/help4Fallon.

 

Well…a little less than 2 weeks and we should be on our way to the Cleveland Clinic.  I really hope I get there because something has to be done and done quickly.  I am suffering so much and my stomach and intestines are out of control.  It is at the point that I can’t even go one day without having at least 2-3 attacks of abdominal pain, which each last about 2 hours each. They are like having contractions when giving birth.  I can feel them coming and they continue to build and build until they peak, and then they slowly dissipate.  However, during this time all I can do is keel over and lay in a fetal position and cry because of all the pain.

 

I am also filling up with fluids and yet I am extremely thirsty. The doctor claims that I am just not absorbing anything anymore and as a result, my colon GI system is overloaded with fluid.  I went to have my intestines cleaned today and he saw how overloaded with water that I am.  My organs are shutting down and all this water is not only giving me edema, but it is flooding my lungs and giving my heart problems as well.  The doctor said he never saw it so bad.  The doctor said that he couldn’t even drain the fluid out because of all the other matter that was sitting in my colon and such that doesn’t pass because my colon is ‘dead!’

 

The doctor said how urgently I need to have the operation to get my colon removed and how I need the transplant. He said that if something isn’t done fast, I will end up dying.  He also said how it is getting so bad that I might need an ostomy and a J tube in order to save my life.  In this way, I will be technically getting all the nourishment and fluids I need, but I will be in psychological hell the rest of my life because I will be constantly thirsty and hungry because I will never be able to eat or drink again.  The doctor said that with my body not absorbing, there is no way that I can eat or drink anymore or we will end up having this problem.  So he said that by bypassing all this and just putting everything in through the J tube (which is directly into the intestines and will be low enough to hopefully avoid all the dead areas), I will get fed and receive fluids that way.

 

But to be honest, that is no way to live.  Can you imagine never being able to eat or drink again? I will be constantly thirsty and hungry even though I am technically being fed.  I will never be able to go to a restaurant because all I will be able to do is watch everyone else eat and drink.  This is definitely not the life that I want. That is why I need to have that surgery and have the transplant.

 

I can’t go to the bathroom because nothing moves through due to my entire GI system being paralyzed.  However, there is so much mucous and fluid in me that it basically just comes out of me. I have to wear a diaper at night because of the fluid overload coming out of me.  I feel like such a baby because I have to wear a diaper.  However, it is getting to the point where a diaper isn’t even holding everything.   I can’t tell you how many times I have had to even change my entire bedding because of the fluid leaking out of me and the diaper.  This is not the life I want.

 

In fact, it is getting so bad that I am leaking fluid during the day now as well.  I would hate to have to wear a diaper during the day, and I am freaking that it will come down to that.  Today when we went to the hospital to have my GI system cleaned out like always, I almost turned around because of this.  I ended up having fluid leak out of me and it went through everything. I was so embarrassed that I didn’t even want to get out of the car.  I was in such desperate need of getting a change of clothes that at 7 AM, I called up Duane Reade to find out if they perhaps sold sweatpants.  My dad kept telling me that they didn’t, but I was hoping that he was wrong.  Yet, like always, he was right.  I had no other choice but to either go in like the way I was or go home.  Since I knew how desperately I needed this procedure, I ended up taking off my underwear and just wearing my sweats.  Thankfully with the color that I was wearing that you could barely see it.  But just knowing what happened was enough for me to be completely embarrassed.  I just don’t know how much more of this I can take.

 

I also have to go for a CT scan as soon as possible.  I went to the wound care specialist because I have a stage 4 bedsore due to the fact that I am only in the 60s in weight and when I broke my hip/pelvis/and femur the nurses in hospital literally left me in bed and my boney butt gave me a bed sore.  Anyway… even though the bed sore is healing, the doctor is worried that I have osteomyelitis, which is a bone infection and extremely dangerous.  It is something that needs to be treated right away because you can die from it. So we really have to move on this because if it is a bone infection like she suspects, I need to see an infectious disease doc immediately and be put on a course of antibiotics immediately.  If it doesn’t clear up in 6 weeks, then I will need further surgery.

 

So now that I have this problem I have to wear a special pad and bandage so that it protects not only the wound, but it protects the bone as well because I am so bony that the doctor is worried it is going to break through the skin again. The doctor also doesn’t’ want me sitting directly on my butt and also ordered me a special cushion and mattress to use.  Gosh… Never a dull moment.

 

12232675_10101731288121710_7499013969034574099_oBut other than that… life continues to move on.  I am getting Scooby ready for the big trip to Cleveland. This will be his first time traveling.  He has really been my best friend.  Without him… I doubt I would have made it this far.  People say that the reason that I even gotten better was because of him.  They are probably right.
Scooby is one terrific ‘service dog’ who according to his trainer is doing his job perfectly.  He is definitely providing a great service to me. She said that he really has a strong bond with me because whenever he sees me, his face lights up and he comes running.  She can be with him and then when he starts to either pull or run, she knows that I am nearby.  Even when we go to the hospital, my dad tells me that he stares at the doors that they take me through until I come out and he won’t take his eyes off of it, which can even be hours.  He goes everywhere with me including all doc appts and even does acupuncture with me.  He is just amazing!

 

I can’t believe how smart he is for how young he is. He only turned 8 months old the other day.  I tried a new game with him the other day by putting treats in a cupcake pan and putting balls on top of it and guess what?  He found took the balls out and found all the treats on the first try.  I didn’t even have to help him.

 

He is also such a character because he loves wearing his clothes.  He is just like a little baby.  I may not ever be able to have kids, but he is definitely like my ‘baby!’ He has his own stroller that he loves (not to mention that I use it as a ‘walker’ as well) and he wears clothes like a baby as well. In fact, he loves wearing clothes so much that he will not even go outside unless he is dressed.

 

Speaking about being dressed… Scooby was a clown for Halloween and he was selected to be put up on the company’s website.  They even want him to model other clothing as well.  If you want to check his picture out, please feel free at http://www.baxterboo.com/p.cfm/shiny-clown-costume?utm_source=photo%2Bapproval&utm_medium=email&utm_campaign=photo%2Bapproval.11220930_10101732141441650_3052077053998190576_n

 

Well… I guess that is it for right now.  Gonna go and rest because I have ketamine in the morning.  Thanks again for all your encouragement and support.  I can’t thank you enough.  If you can continue to pray and pass my site along (www.gofundme.com/help4Fallon) I would appreciate it.

 

Thanks again,

Fallon

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November 11, 2015

12194945_10101727443147070_1811867654067404735_oHI-

Just wanted to give the latest update since it is another sleepless night. Feeling so ill and figured that instead of just sitting here suffering in pain, I would be somewhat productive and give the latest update on what is happening. Also thought that maybe by doing this that it would help take some of the suffering and pain away because it will keep me busy and my mind occupied. If nothing else, it will help me pass the time until morning. Thank goodness that I have ketamine in the morning because I have been suffering so much lately.

I have been having the worst pains in my stomach lately. I never thought that it could get this bad. Even though I constantly used to suffer with stomach pains, I used to get a pain that was debilitating and wiped me out maybe once a day or every other day. However, it is now occurring that I get this pain about 4-5 times a day now and it is absolutely unbearable and intolerable. It literally wipes me out.

Something definitely needs to be done and done fast because my entire digestive system is acting up. I get these debilitating pains 4-5 times a day, which occur over the course of 2 hours each. It is almost like having contractions when you are pregnant and ready to give birth because I can literally feel them coming because they start out subtle and then they build and build until you can’t take it anymore and all you can do is literally lay there in the fetal position and scream and cry because of how bad the pain is… while my entire body breaks out in chills because of the triggering of the autonomic dysfunction. This pain lasts for about 2 hours and just as it builds like a contraction, it also peaks and then it dissipates.

The doctors think that the reason that I am breaking into the chills so much lately is because of the autonomic dysfunction and the fact that my body can’t handle processing more than one sensation or an extreme sensation at a time. Therefore, when I become in pain, I break into the chills. As soon as the pain disappears, the chills stop too.

The pain is just so excruciating at all times and besides that… I have been extremely nauseous and vomiting like crazy. I can’t even go to the bathroom without vomiting. It is so weird because anything that basically puts pressure in the abdomen (i.e. going to the bathroom)… it makes me vomit. I just can’t take it anymore.

I can’t even eat or drink anything anymore without having mega problems with my stomach and the vomiting. Even the very few things that I was able to get down before…even my favorite things to eat like ice cream or a simple thing like egg whites have become impossible to get down. I can’t even stomach getting my pills in me anymore, which is a nightmare because it isn’t like I take only a few pills. I take like 20 pills at a time. I have no choice but to take these pills too because I can’t live without them. After all, it is these pills that are supposed to be keeping me ‘alive’ and keeping me going!!

I am supposed to be leaving November 30th for Cleveland Clinic. That day can’t come soon enough. We are supposed to be going to Ohio to see the surgeon because I am still in need of the multivisceral transplant which entails getting a new small and large intestine, stomach, liver, and pancreas. It is a major surgery that is extremely dangerous and in fact it is the most dangerous of all transplants. Not many hospitals perform it, as Cleveland Clinic is only one of the six that do it.

However, since it is so dangerous, I need to be as strong as possible in order to be able to survive it. Therefore, since I am so very weak, they are hoping to take out the colon first and hopefully the small intestines won’t be as bad as they are thinking and therefore it will allow us to buy some time to allow me to get stronger for the transplant. We won’t really know for a fact how badly the small intestines are until they remove the large intestines, but the goal is to just basically live on the small intestines for awhile and get me stronger for the transplant.

This was the surgery that was supposed to occur months ago. However, it had to be canceled because of the accident that occurred when I broke my hip, femur, and pelvis and became the bionic woman. I had to have mega surgery and I am still recovering from it. I had to basically relearn how to walk all over again because they had to put a rod though my femur and put plates and screws and nails into my bones as well. This was the worst surgery I have ever had and a surgery I dread ever having again. It was unbearable the recovery from it has been incredibly hard. Thank goodness I have Scooby because he has made the biggest difference and he is the reason I have made it as far as I have.

My mom and others say that I wouldn’t have recovered and made it this long and far if it wasn’t for Scooby. They are probably right when they say that. He has been an amazing dog and best friend to me. When he stayed the entire 2 weeks in the hospital with me, it really made a huge difference in my recovery. I can’t tell you how much the pain changed when I came out of the operating room and they put him on my bed in the recovery room. Scooby was actually the first dog ever in the OR and the recovery room. He is my little buddy and he has been taking such great care of me. You know the song “Mary Had a Little Lamb?” Well… that is the story of Scooby and me! Wherever I am… Scooby is sure to follow!

IMG_1758Scooby has been going through this entire recovery process with me. He goes with me everywhere… whether it is to a doctor, to the hospital to get my colon emptied, or even to Physical Therapy. The PTs even say that he is the mascot there. He is really adorable there because he sits right with me and helps me work out. He is such a smart and well-behaved dog… especially for a dog that is only 7 months old.

In fact, Scooby will be making his first plane ride when we go to Ohio… if we go. He is coming with us to Cleveland so I am really excited that I am going to be able to take him with me. I love him so much and I am so glad that I have him. There is nothing that I wouldn’t do for him. However, even though I love Scooby with all my heart and such… I have been looking for someone to take him. Sometimes I wonder if I am being ‘fair’ to him because of how sick I am. In addition, I also know that I may not make it much longer and I want to know that he has someone that would take him and he would have a good home to go to.

I really need to get to Cleveland because my disease is spreading and I desperately need my colon removed. However, even though it is booked and scheduled, it is all contingent on whether we have the funds or not.

When I fell and broke my hip/pelvis/femur in August… our finances really got hit hard. We were really struggling back then, but we are struggling even more now. When you have your health, you have everything. Due to the accident, we had to pay for so many things in order to help get me well. Between the equipment, doctor bills, and even the nursing aide bills… we literally went through everything. After all, I couldn’t remain alone at home and we needed to have a private nurse, which was very expensive among other things. So… all the money that was hopefully put aside for this operation had to be spent on the operation for my hip/femur/pelvis and for the recovery process.

So…. I am really desperate for help from others. I need donations more than ever because it has gotten literally impossible to pay for medical treatment. We are struggling so much and I can’t tell you how appreciative even a dollar is at this point because it is one less dollar that we have to come up with. My disease is really getting worse and I am like a time bomb that has been detonated and getting ready to explode.

Not only do I need to get this surgery done in Cleveland though, but I also need to get to Mexico so that I can have that ketamine coma that will potentially ‘cure’ me. IT is the only treatment out there that will cure my entire illness. However, it costs over $100,000 and of course we can’t afford it. Even though I have been getting ketamine here in the USA, Ketamine is considered a schedule 3 drug in the U.S., and as a result, only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries. I have already met with the doctors down there and they said that I am the worst case that they have seen and had said how desperate I need this treatment.

This ketamine coma is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options. During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer. Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness. This coma is risky, but I am willing to do all this and everything at a chance for a normal life.

IMG_1797That is why I am begging for donations. I really want to live. There is so much that I want to do and have not done. I have been robbed of life and I want it back.  Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire!! Imagine having your body totally out of control and on autopilot all the time. Imagine having continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis. Imagine having no social life and your whole world being turned upside down with everyone walking out on you!! I try to smile and make it seem like it isn’t so bad, but living my life is like living in Hell.

I want my life back and I am really running out of time. The holidays are coming up and it would be a real miracle and great holiday present if I were able to get the necessary treatment that I need to save my life. I can’t remember the last time we celebrated a holiday because of how strapped we are financially. But if I got better, I would not be a burden to my family anymore and I would be able to become the doctor that I always dreamed of becoming so that I could make a difference in the world. We desperately need help paying for my medical treatment because not only can’t we afford the big trips to Ohio (which is quickly approaching and is scheduled for November 30th) and Mexico, but we also can’t even afford my daily meds or the treatments that I receive at home. Even when the insurance does pay, we still have copayments to also pay which quickly add up as well.

Therefore, if you can please spread this link for donations I would really appreciate it. There is no donation that is too small, and all donations are appreciative. Donations can be sent to www.gofundme.com/help4Fallon. If you have any fundraising ideas, please email and let me know at Femirsky@gmail.com.

Well… I guess I will be going because I have ketamine in the morning. Thanks again for all your continuing support.

Love,

Fallon

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