FALLON MIRSKY

Please help SAVE MY LIFE!

August 1, 2017

IMG_4709.JPGAugust 1, 2017

Hi! Sorry I haven’t posted for a bit, but a lot has been happening. Thankfully through the much-needed and thoughtful prayers and donations of my amazing supporters I’ve been able to kinda ‘hold my own!’ I haven’t been well nor better, but I was able to function to a point a stabilize and wasn’t declining as I was previously. However, it is very hard to say this but my health is again on the very decline and I again need the help of my fellow supporters and medical team.

I only hope that you will be able to support me because unfortunately my health is again on a very steep decline. I’ve gotten very unfortunate news that my body is once again failing and going into total organ failure. I’ve started having to go to the hospital basically everyday as my world has become full of white walls, hospital gowns, needles, procedures, and pain once again. I only wish this didn’t have to be. I go for treatments now at least 3 times a week in the hospital, which includes so many things but a few are nutrition, IVs because I am dehydration, very high ketamine infusions, procedures to clean my GI system put because I can’t digest anything and I am going septic and taking out precancer, and so many other things. Things have gotten so bad that they are now even looking at a custom wheelchair because I am having a hard time walking between the dysautonomia and all my other problems.

Many surgeries are needed and are coming up. I am going for surgery on Aug. 30th to repair my entire hip, which means that they will have to work through and deal with a huge blood supply area. This is extremely dangerous especially because of the huge blood supply area and especially considering my fragile state and how poorly I heal. I am also going to have to have all my screws in the rod in my femur replaced, which will be difficult because of how poorly I heal.

After this huge surgery, I will then be heading into another surgery on November 2nd and UPENN. It is a major surgery where they will be removing my colon and part of my GI system. It is a very difficult and complicated surgery that many doctors do not want to perform on me. Luckily, this doctor does want to perform this lifesaving operation on me because without it I will die since I am constantly going toxic since my organs are paralyzed and dead, and there is also a lot of precancer in the area. I cannot absorb any nutrients so I cannot gain weight, and due to my entire illness, I have been labeled ‘failure to thrive!’ Robots will also perform this operation alongside this doctor.

My medical expenses are again extremely astronomical and I desperately need help in affording treatments and surgeries. Even the costs of my medications, copayments, deductibles, etc. Are way too much to bear. I am constantly receiving treatment, I seeing doctors, on so many medications, going for tests, even going for daily trips to the hospital because I am in an emergency state… And all are not covered. In addition, these surgeries are not all covered and especially since one of the surgeries is out-of-state, we desperately need help affording it. It would mean the world if you would be able to help. Any donation would do.

In addition to donations that I am gladly accepting, I am also selling t-shirts as seen in the picture. They are $25 and the proceeds go to help with my medical expenses. These shirts come in pink or blue and in all sizes. They say TEAM FALLON and right below it is my famous quote DO WHAT YOU THINK YOU CAN’T DO!! By getting a shirt, not only are you getting a terrific gift to show your support, but helping me as well. If interested, please contact me at Femirsky@gmail.com. Don’t forget to share with your friends and family because this opportunity is open to everyone who is interested.

Please help me as soon as possible. Every day counts at this point and any donation is greatly appreciated.

Advertisements
Leave a comment »

April 23, 2017

IMG_2989.JPGHey!  Sorry I haven’t written in a bit.  Just trying to stay alive!!  Literally!! So many things are happening that it feels that the harder that I try to get better, the faster I am falling. It feels that the harder I am trying to get come up for air, someone keeps putting more and more weights on my legs to pull me under the water and to drown me.  I feel like I can never catch a break!!  In fact, I think that I might be switching to making updates through “VLOGS” instead of “BLOGS” because it is getting to the point where so much is happening and it is getting too difficult and tiresome to put it all down on paper.  Plus, I realized that most people (including myself) rather watch something than read, and plus it will also go much quicker.  It would also give you a clearer picture as to what is occurring with my illness and perhaps I can bring more awareness to this horrible condition.

 

It appears that things are starting to really go downhill.  Even though the doctors always said I was “lucky” and “amazing” to have made it this far without those lifesaving surgeries that I desperately have needed (but haven’t been able to afford … it looks like my “luck” is running out.  In reality, I should not be alive, as there is no real explanation as to why I am “alive” today.  My organs are in failure, my weight is only in the high 60s/low 70s, my bloods are low, my electrolytes are off, I have no nutrition, etc.  Doctors don’t even know how I am functioning, but they are saying that it is because of my dog SCOOBY and because of all the thoughts and prayers from all of you that I have made it this far.
Yet, it appears that even though I have been able to somewhat “function” and survive despite all these problems and my body failing, as I have been diagnosed with “Failure to Thrive,” my body is now not able to deal with all that has been occurring anymore.  It appears that everything that is happening inside of my body is now really taking a toll on my health and causing me to really have a downfall. The days have been getting harder, as it is getting harder to breathe, eat, fight, and even to just stay alive. That is why I really need to have the operations as soon as possible now.

 

In the last two weeks, my bloods have fell extremely low (which were already in critical values already) and my body was tingling and numb.  It felt like I slapped something incredibly hard and the tingling resonated nonstop throughout my entire body.  It went throughout my face, hands, and entire body.  In addition, I have been getting nonstop spasms throughout my body that are incapacitating and basically impossible to break. It was particularly worrisome because even though my bloods have always been “below normal” and at risk for heart failure and arrhythmia, it was more probable of occurring with the lower values.   Yet, when they brought up my electrolytes a bit, I started to feel better.  Yet, with my body, this is only a temporary fix and unless the “problem” is fixed… I will be back in the danger zone.

 

In addition, when I went into the hospital to have my GI track cleaned out, as I go into the OR every week to do that because my GI track is basically completely paralyzed/dead and if they don’t do it I will go into sepsis… I ended up giving the entire hospital a huge scare as my blood pressure dropped to about 60/22.  I am always used to my blood pressure dropping to about 70/35, but when they said my bottom number went down to 22, it really scared me.  When I got out of the procedure, they immediately got my dad and he stayed by my side along with the nurses because they were afraid something was going to happen to me.

 

In addition, about two weeks ago, they found another adenoma in my colon.  They found one before and removed it, which was also cancerous a couple of months ago in the splenic flexure.  But they couldn’t really see behind it because of my “dead” and distended colon.  However, they did remove it and they said that this is just “one more reason I need my colon taken out asap.”  Well, like I said before… two weeks ago they found another one in the colon and now having two in just a few months means that this colon is really just a ticking time bomb in more ways than we originally thought.

 

To make matters worse, I also have to get surgery on my hip and femur again. About 1 ½ years ago, I fell and ended up breaking my femur, pelvis, and hip.  They ended up putting a screw, nails, and a rod in my femur.  However, due to how thin I am and because my body ate away all my muscles, the screw is too big for my body and as a result, the tendons are literally getting caught on the screw and snapping on it and tearing on it.  So, they have to go back in and put a “smaller” screw into the rod that is in my femur.  However, this won’t be an easy surgery at all because I also grew bone in my hip and hip joint that shouldn’t be there.  I have bone overgrowth and therefore, they literally have to chop off all that extra bone as well in order to get to the screw.  Not only will this be extremely painful, but it will be very blood too because apparently, there is a huge blood supply in the bone that they have to chop off.  Going back into a second surgery to “revise” any equipment is always more difficult, but with all these other problems (not to mention I am not in the greatest condition to begin with) … it makes it even more dangerous.  I just hate to go through that recuperation again because I remember how hard and difficult it was when I broke my hip/femur/pelvis initially.  It was the worse surgery and recuperation imaginable and I swore I would never have this surgery EVER again.

 

But that surgery is going to probably have to wait because right now the more important surgery is putting the port and tubes into my heart to “feed” me and then getting that colon out.  I am receiving absolutely no nutrition and I am so thirsty because I can’t absorb anything.  So, in the meantime, the surgeon for my hip gave me a cortisone shot to try to help me deal with the pain for the screw.

 

My dysautonomia has also started up and gotten worse, which has triggered off the Reflex Sympathetic Dystrophy in my body again.  I have severe discoloration in my lower limbs and extreme burning.  It literally feels like my whole entire body is on fire.  I have been going weekly into the hospital to get blocks and ketamine infusions, which they have even raised my dose a lot with.

 

I have really started INTENSE physical therapy.  The doctors want me to keep my muscles going and to build up whatever muscles I can because I am literally “wasting” away.  The only bad part is that it is not covered by insurance, and it is extremely expensive.  We honestly don’t know how much we are going to be able to keep up with it since it is so expensive and my medical expenses are already astronomical.  Yet, it is so critical to my because this is what is keeping my body moving and functioning.  It is like I can’t live without it, but we don’t have the money to do it.  I don’t know what we are going to do. The doctors need to me keep up my strength as much as possible and gain muscle, as this disease has taken all that. Exercise delivers oxygen and nutrients to your tissues and helps your cardiovascular system work more efficiently. In this way, my heart and lung health will hopefully improve, and I will have more energy to tackle daily chores.

 

Things are just getting progressively worse and I desperately need this surgery as soon as possible.  My brother’s wedding is May 21st, and I am hoping to make it to his wedding.  We are hoping that perhaps soon after I will be able to get the surgeries because we don’t know how much longer I can make it without it.  I am so self-conscious to even go to his wedding because all I wanted to do is look ‘beautiful’ and instead… all I do is look like an emaciated skeleton in the dress.  I also only wish that I would be able to dance at the wedding, but I don’t think in my condition it will be possible.  So, I guess I will be watching from the sidelines.

 

FullSizeRenderScooby has been doing terrific.  I don’t know honestly how I would manage without him.  He has been right by my side throughout this entire ordeal.  I am so grateful that I have him.  I love this dog to death.  He follows me everywhere… even to the bathroom.  When I have to leave him (on the few occasions), he will never rest.  Instead, he just stands and stares at the last place he was able to see me and waits for me to return.  He is absolutely my BEST friend.

 

Dad has been working harder than ever.  He is doing whatever he can to pay for my medical treatment since it is so expensive. He really scares me because he is 63 years old and he is working nonstop and 7 days a week at times. His work isn’t just sitting behind a desk either, but he goes out and does actual physical labor.  I don’t honestly know how much he can take between working so hard and all the pressure he is under because of me.

 

But to be honest… we really need help.  If anyone can please think of any way of raising money for my medical expenses I would really appreciate it.  I especially need money for procedures, therapy, surgery, and after care.  We especially need money because when I have the surgery dad won’t be able to work and therefore, we won’t be having any income.  Even after surgery, we will have to literally have to change so many things and get so many supplies (which won’t be covered with insurance) and therefore, we really would appreciate all the financial help that we can get.  Even if the insurance does cover anything, it will be minimal.  In addition, I am also worried that since I will probably need a bag, I will also need new clothes that are especially designed to hold and conceal the bag as well and therefore, I need to have money set aside for that as well. Having a bag is something I don’t want as it is, I really don’t want to worry about not having clothes to help “deal” with it.

 

But in the meantime, I keep pushing on. I keep trying to smile despite how bad things are getting.   I am watching tons of YouTube beauty videos on makeup tutorials.  Learning new ways to apply makeup since I love it so very much. I love makeup because it makes me feel pretty and it makes me feel ‘normal’ and not sick. My grandma always taught me, “If you look good, you feel good!”  You can’t believe how much makeup can hide things.  I have even been practicing on my mom and when I do her makeup… what a difference it is.  I did her makeup for the bridal shower and she looked absolutely amazing.

 

Well… I guess that sums of everything for right now.  Like I said… if you can think of any way of raising funds, please let me know.  I don’t just write these blogs to ask for help, but I am hoping to bring a little insight into my life as what is happening and hoping to bring awareness into this horrible illness.  In this way, even if I don’t get the help that I need to save my life, perhaps someone else reading this can be helped and know that they aren’t alone in going through all this stuff.  Please email me at femirsky@gmail.com for any suggestions, questions or comments.  Donations can be accepted at www.gofundme.com/help4Fallon.  I can’t thank you enough for all your support and for being there for me all this time.  I really wouldn’t have made it this far without your prayers and support.

 

Love,

Fallon

Leave a comment »

March 15, 2017

my baby and meI know I haven’t written in awhile, but I just figured everyone just had enough with my story.  Yet, even though I have tried to not ask for ‘help’ from others, I realized that it really is impossible because I really can’t get on and move forward without the ‘help’ of friends.  I need them in many ways as I not only need them emotionally, but I also need as many donations as possible because the medical expenses that I have incurred are astronomical and the ones we are going to be facing will be out-of-the-park.  I am having a very difficult time getting treatment because I don’t have the funds for it, and as a result, my health is declining.  The bills are so huge and medications/treatments are so expensive that we don’t have the money to be able to afford them. I desperately need help, which includes treatments and medications, but we cannot afford the by ourselves. In addition, I just got huge news from my medical team about huge upcoming surgeries and procedures, but they will also be very costly and we won’t be able to afford them without help from others.  I will explain more below.

 

In addition, I realized I also needed to write some blogs about my journey because after careful thinking and lots of soul searching, I realized that I need to write about my story because not only is this an outlet for me to get my feelings across, but it’s a way for others to become knowledgeable about my journey, which is not a journey that a regular person usually has.  It is a journey of a brave person who doesn’t let roadblocks get in her way, and it is a journey of a person who tries to persevere over anything that may come her way.  If there is something that I can give to the world, it is the ability to show that even though I was dealt a bad deck of cards, I am still trying to persevere and try to overcome this illness as much as possible so that I can live as full as a life as possible.  I also thought about doing a YouTube channel, which I think I might do in the future.  But at this point, I figured that I would just update all that has been happening with a brief blog.

 

A lot has been happening since I last blogged.  I have been declining and now it is at the point where I am basically living 2-3 days in the hospital per week.  I am in physical therapy basically 4-5 times a week because my muscles ae deteriorating and they cannot activate enough to actually ‘build’ muscle.  My GI system has also gotten to the point where I am in total intestinal failure, as everything I eat does not get absorbed and basically as it goes into my body is how it comes out. Not only am I in intestinal failure, but my body is failing in multiple ways and I have even been diagnosed with “failure to thrive.”  My body organs are shutting down and I have even been told that they only give me at the very most 1-2 years unless something changes.

 

Recently I went to a surgeon and he said to me “I am looking at someone younger than me who is going to die a premature death if something isn’t done and done fast.  I give you only 1-2 years at the very most until you will die if something isn’t done.”  It appears that my body is in intestinal failure and it is also affecting all my other organs.  I am also starving to death because I can’t absorb anything and as a result, I am also starving my heart.  The surgeon said that my heart can’t go much longer being ‘starved!’  We have tried numerous ways to feed me, but all attempts have failed.

 

The surgeon said that I am very complicated and he will need the help of the entire hospital and every specialty to keep me alive when I am operated because I have more stuff wrong with me than he knows and can handle.  But he is willing to operate, but under no circumstances will this be an easy operation.  It will be a very long and probably expensive operation because lots of doctors will be involved and I will need lots of care afterwards, which includes supplies that will not be covered by insurance.  But the surgeon said that this is something that must be done if I want to be able to stay alive.

 

It appears that not only will I need my intestines taken out, but my rectum has failed me as well. I have finally build up enough confidence to finally say that I am 35 years old and wear diapers. I have always been so embarrassed because what 35-year-old wears diapers?  But I am left to no other option.  Since my rectum doesn’t work appropriately, I always end up leaking and having accidents especially at night when I am trying to sleep.

 

Since I can’t absorb anything, which includes food or liquid, the liquids usually just run right through me and that is why I have to wear diapers.  I know it is confusing because it sounds strange how I don’t absorb and I say that everything comes out of me on one breath and then say that I don’t pass anything and have to be emptied in the OR on the next.  Let me clarify it.  In terms of both liquids and food… nothing gets absorbed in either case.  However, liquids are fortunate not to get stuck in my body even though food does.  Just as when someone doesn’t have a colon, a person has to drink more fluids than usual because they don’t have a colon to absorb the fluids, my body is behaving as if I don’t have a colon as well.  Since the colon is the organ that absorbs the water in the body and since it is not working, whenever I take in water content, it just runs through my body.

 

Food on the other hand usually will become stuck in my intestines since there is no peristalsis. Although some does come out minimally (and how it comes out is how it went it because it doesn’t get absorbed or breakdown), the majority will remain in the colon.  Whenever I eat, my body looks like I am literally 9 months pregnant and ready to give birth. That is why I have to go to the hospital at least once a week into the operating room because I need to be ‘emptied’ so that I don’t go septic. Going to the hospital at least once a week and into the operating room is not a way to live!

 

I can’t absorb food either and as a result I will need surgical J and G tubes placed in.  Yes… I will need BOTH types of tubes because I am in total GI failure and you can only use J tubes and G tubes for certain kinds of foods and medications.  Like you can’t put medications in the J tube because it will both bot be absorbed and clog it.  I also will use one of the tubes as ‘vent.’  He doctors said that ‘whether I want to acknowledge it or not, I will end up having to have both a J and G tube because I will never be able to eat again. I can’t put it off much longer either because I am starving my body and especially my heart and I am going to die!’

 

In addition, the doctors said that my intestines and rectum both must come out.  I always knew that my intestines were troublesome and would have to come out, but I never knew or expected my rectum as well.  It kind of threw me for a loop because by having my rectum taken out, it would mean that I would have a bag for life and it would smash all hopes of ever being reconnected again…. Even when I do have the transplant.  So that was a big gulp to swallow. I asked the doctor if I can repeat the tests again just to confirm that my rectum doesn’t work because once the rectum is out, it Is gone for good and is a permanent situation.  The doctor said, ‘you can have all the tests till the cows come home, but it isn’t going to change anything.’ But he did say if it made me more comfortable then I can repeat it even though it won’t change anything.  He does want to try an interstim, which is a stimulator to finally prove to me though that it is a nonfunctioning rectum.

 

The doctors really want me in the hospital asap because I need this surgery.  The doctors said that I am in intestinal failure and I am in “failure to thrive,” which is leading to multi organ failure and heart failure.  They want to put a port into my heart so that they can try to feed me.  Nothing I eat gets absorbed, so essentially, I am literally starving to death.  Literally. It comes right out of me as soon as I take it basically especially liquids. Then since my intestines are so dead and dilated and extended, it builds up with all this gas and fluid and other stuff that doesn’t move and makes my abdomen even more extended. Since my colon is so distended and so ‘Big’ already, it is already way too big for my little abdominal cavity and it is also putting too much pressure on my organs, which is causing them to have problems and fail as well. Then when I eat something, my stomach and colon become distended because they are basically paralyzed and since it is already swollen and too big for my abdominal cavity, it puts even more pressure on my organs when it swells even more.

 

Not only am I literally ‘starving to death’ now, but I need to be strong for the surgeries because they are not easy surgeries at all.  I thought that since I recovered from the surgery when I broke my hip, femur, and pelvis that I was in good shape.  However, the doctor said that even though that was major surgery, it is nothing compared to this.  Having GI surgery is really bad and hard and extremely dangerous because you literally have leaking stool in your body and that can easily kill you.  In addition, whereas I was maintaining my weight before even though it was so very low, I am losing weight now.

 

They wanted to admit me asap, but with the snow and everything… it kind of messed things up.  Plus, even though they wanted to admit me, I can’t really be admitted until I get some funds to pay for the surgery, the aftercare, and to help pay for the costs when my dad doesn’t work. I know what has to be done, but it just isn’t an option right now when we don’t have the money to do so.  I also want to get a psychologist, which is not covered under my insurance because this surgery that my team wants to do is massive and I don’t know if I can honestly handle 2 tubes and a bag.  I have been strong throughout this entire process, but I don’t know if I am strong enough to handle all this. In addition, all the supplies and surgery will be so expensive and to be quite honest, we really don’t have the funds to cover everything.  I will have to have lots of equipment afterwards, which won’t be all covered by insurance.  Plus, even though some of the surgery is covered, it isn’t completely covered by insurance and we really can’t afford the difference.  My father will also have to miss lots of work to be by my side especially since he will have to stay in the hospital with me and such, which would mean him missing work as well. My dad has been by my side ever since we heard this devastating news and has been through everything with me to hold my hand through it all.   So, there is a big financial component to this as well. So, everything is on hold right now until we get the funds to do all this.

 

17264618_10102323322579910_7984686181242388616_nI did speak to the doctors and told them already that when I do come to the hospital for the surgeries and have to stay, I am bringing Scooby.  For all that don’t know Scooby, Scooby is my service dog and has been by my side throughout this entire process.  He is by my side every day throughout everything I go through and goes with me everywhere.  He goes with me to every doctor’s appointment, every hospital visit, etc.  He is the best thing that ever happened to me and is the reason I am still here today.  Everyone says, “He is the reason why I am still alive because he is keeping me going!” He is a service dog who knows how to sense when I have an attack of my dysautonomia.  He is best friend and everything.  He is the only thing that makes everything better!

 

In addition, I recently started another medication called Mestinon, which is used to treat muscle weakness and is a muscle strengthener.  Mestinon is a drug that stimulates the parasympathetic nervous system by inhibiting the breakdown of the neurotransmitter (acetylcholine) the PNS runs on. It does this knocking down the enzyme, acetylcholinesterase, that does breaks up acetylcholine. That should mean more acetylcholine availability and more PNS activity – just what the doctor ordered for someone in my condition with dysautonomia and autonomic dysfunction.  I think it does help but it has some horrible side effects even though they are starting to get better. I once overdosed on the drug this week because I took it with an over-the-counter acetylcholine inhibitor. Didn’t think it was doing anything so didn’t think it would matter to take them both together. Well I ended up having huge problems. My eyeballs were pinpoint and I couldn’t talk and my eyes were blurry and more. I had to ride it out (8 hours) because that was all that could really be done.
In the meantime, I am still trying not to let it get me down.  I still continue to try to smile and try to look the best I can.  I got into makeup and have been watching lots of YouTube videos on how to apply it.  Not only am I having a lot of fun with putting on the makeup, but my grandma always taught me that “if you look good, you feel good!”  When I am all dressed up and have makeup, it makes me feel more ‘normal’ and it makes me feel like I am not as sick as I really am.  Plus, it makes it look like I am not as “sick” either.  It makes other wonder how “sick” I really am because I honestly don’t want to be known as the “sick one!”  Why do others have to know me as being “sick” because I am still me!!

So that pretty much sums it all up as to what is happening. While the doctors are hopeful that they can help me, it is going to be a long road. If you can please help me raise the much-needed funds for my medical expenses because I desperately need them, I would greatly appreciate it because my life depends on it.  I cannot get the treatment that I need nor can I get all the medications that I require.  We are coming together as a family the best way we can, but we need help. If you can help me out in any way possible we would be forever grateful. I truly thank you for taking the time to read my story.

Please share my GoFundMe link at: www.GoFundMe.com/help4Fallon

 

Leave a comment »

January 8, 2017

15873361_10102228975831550_8287766223773819615_nJanuary 6, 2017

Happy New Year! I just wanted to write this and update everything that has been going on. I haven’t written in a while, but since I am rapidly deteriorating and in desperate need of treatment (i.e. surgeries/procedures, medications, doctors, etc.) that we can’t afford it, I figured I would write and ask for donations so that I can receive the much-needed donations. We have gotten way over our head in medical expenses. I also wanted to write this because I wanted others to know about what I am going through since it isn’t a common illness. Knowledge is power and if I can raise awareness through my GoFundMe page, then perhaps suggestions and other resources of help can be found.

Life has been harder than ever lately. I am forced to live a life within the 4 walls of my home because I am too ill to go out, my social life is nonexistent, the only thing FUN and I have in common is the “first” letter, and I can’t even become the doctor that I always dreamed to be. My life basically has reverted to being with my dog, Scooby, who has been my very best friend and don’t know what I would do if I didn’t have him in my life. Every single doctor thinks it’s a miracle that I am still alive especially since I have organ failure, depleted blood levels, low electrolytes, weigh so little, etc. They are amazed with how much strength that I have. Yet, they all know that even though I have been fortunate to stay alive this long, they all know that it can’t last forever especially without medical treatment.

There is so much going on that I don’t even know where to start. I guess I should begin with a little bit of what happened with me to get me so sick.

I suffer from rare, complicated and life threatening illnesses known as dysautonomia, reflex sympathetic dystrophy, severe gastroparesis, intestinal pseudo-obstruction, short bowel syndrome, and even a pituitary brain tumor. I even have developed a host of other problems secondary to these illnesses such as losing my teeth and teeth/bone erosion, which has forced me to look like a ‘Jack O’Lantern’! I know it sounds like a laundry list and impossible to have, but it’s the truth. Who would have thought that the little signs that I expressed as a child was actually warning signs to this illness? It wasn’t until college that my whole world came crashing down.

When I was a child, I had little quirks here and there that stirred up, but doctors never picked up that I had any of these illnesses. We never heard of these illnesses so my parents never even thought to look further. Who would have thought that the minor stomach problems that I had when I was a baby would have turned into this? But all the docs said at that time was ‘sprinkle some Metamucil onto everything she eats!’ Who would have thought that when I broke a bone and when I skated and changed colors that they were actually showing a portion of this illness? However, I was always able to suppress the illness. However, as high school years were ending, I was getting sicker and it was getting harder to overcome and suppress things. It was getting more difficult to eat and I was losing weight. Yet, we still never heard of any of these illnesses as of yet and therefore, we didn’t know what was really happening. However, after freshman year at NYU, I ended up having foot surgery and that was the end of it. The disease erupted like a volcano and there has been no suppressing it ever since. It has been going rampant throughout my body raging like a wildfire.

Once an “A ” student who loved school, was involved in many extracurricular activities, was a competitive figure skater and violinist, enjoyed spending time with family and friends, I spent the last couple of years incapacitated, paralyzed, unable to go out of my house to socialize or work, and unable to sit, walk, shower or even eat. I was an active, healthy teenager, until, without any warning, my life as I knew it was ripped away from me by these extremely rare, painful, and crippling illnesses that will kill me if I don’t get help quickly.  I am a time bomb just ticking away and I really hope to be able to be helped before I explode.  There are so many times that we don’t even know if I will make it through a day or night!

To begin with, I suffer from dysautonomia, which is malfunction of the autonomic nervous system. The nervous system controls most of the essential functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of pupils, and temperature control. As a result, I have trouble regulating all of these systems in the body due to the malfunction of the autonomic nervous system.

In addition, I am crippled by Reflex Sympathetic Dystrophy, which is a rare, disabling pain disorder in which ordinary sensations such as touch, warmth, and even coolness is perceived as painful. I suffer daily (24/7) from sharp, stabbing, tingling and burning pain; severe headaches; paralysis; intense muscle spasms; dystonia; sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; inability to sweat; swelling; deterioration of bones; decreased hair growth; discoloration of the limbs; and painful skin ulcers. Due to how hypersensitive I am, it’s difficult for anything to touch me, which includes even sleeping with a blanket.  It ranks higher on the pain scale than Cancer, childbirth, amputation of a digit, etc.

Finally, I suffer from my GI system completely not working. From my esophagus to stomach, to small and large intestines, it is completely paralyzed. My entire GI tract has completely failed me, and I am unable to eat.  I am unable to absorb nutrients, have severe muscle wasting/deterioration, and I look cachectic. My weight has plummeted to only weighing in the 60+ range, and I spend every week going to the hospital to have my colon cleaned out so that I don’t go toxic. I am even forced to wear diapers because of my GI system not working. This is not the life I want or should be having. I end up bloating up and looking like I am 9-months pregnant every time I do try to eat or drink something. I am 34-years old and yet, I have to wear diapers because I am always having ‘accidents’ due to the mucous leaking out from the impacted stool. I even have to use a special toilet in order to go to the bathroom because it positions me better.

2888417_1483723895-2141_updatesIdeally the doctors would like to perform a multivisceral transplant on me. But unfortunately, with the insufficient funds, we waited so long that I have deteriorated to the point that I am not strong enough to withstand an operation like this. It is the worst transplant to undergo along with lung transplantation. So, the doctors said that the next step is to just remove the colon because it is imperative to do so and urgently needed. As time goes on and we wait to get funds, I only get worse and weaken further (which makes me a poorer candidate for surgery).

Therefore, the next step is to remove my colon as soon as possible. Not only do I need to remove it because it is completely ‘dead’ and causing other problems and affecting other organs as well, but they found cancerous polyps inside as well. Although they did remove them, they were unable to see how bad the entire colon is affected with the ‘cancerous polyps’ because the colon is so obstructed, paralyzed, dilated that they can’t get past the splenic flexure. Doctors have all agreed that I am one of the ‘sickest’ and most ‘complicated’ patients that they have seen. I have failed all treatments from a medical standpoint, as I have been on every medication available, which have been both FDA-approved and non-FDA approved. Therefore, the only thing left is for surgery.

However, in order for this to take place, it needs to happen outside the New York area, which is something we cannot afford at the current moment. My medical condition is extremely complicated and I not only need to be at a hospital with top surgeons who are capable of handling my unique situation, but I need to be in a place that can also be able to handle any other problem that may develop since my entire body is medically unstable and anything is possible to occur. I am not considered your ordinary ‘textbook case’ and many times my body even stumps and scares even the top physicians. I have had times when I sleep in the hospital with the paddles next to my bed because they are afraid my heart will go out during the nite, I’ve had doctors run out of the room to consult medical books because my body did something that they never see, etc.

In addition, in order me to proceed with the surgery, I will require not only Ketamine to be administered during the operation, but I will need it for days after as I recover in order to suppress my neurological illness. Every time my body is under stress or undergoes ‘trauma,’ my illness is not only exacerbated, but I have a huge chance of my illness spreading and worsening. Therefore, Ketamine must be administered for some days after the surgery to ‘quiet’ the body down and suppress the illness because Ketamine is a NMDA-receptor. However, not many hospitals do not administer Ketamine outside of the operating room, and they are hesitant to do so because it needs to be very closely monitored and done in the ICU. Most hospitals don’t even have the nursing staff to be able to allow this ‘close’ monitoring. So very few hospitals are capable of doing this and all are out-of-state.

Unfortunately, this illness has literally drained us emotionally and financially. Not only do I need help with paying for the actual major surgeries and procedures needed to save my life, but I need help in just managing the illness on a day-to-day basis because without this ‘management’, I will die anyway. I am on countless medication and besides it being extremely expensive, it isn’t all covered by insurance, as some are not on the plan and some are received outside of the USA. Even the ones that are covered have costly copayments and of course they add up quickly. For example, just to be on the medical marijuana, it costs me about $500 a month.

Just to keep me going, I need to take constant medication, which is over 50 pills daily and I even take multiple injections.  These include Morphine, Dilaudid, Nucynta ER, Ketamine, and Marijuana to just name a few. Many doctors have told me that the amount of medications that I am taking would be enough to “kill a horse.” I even go every week for ketamine infusions, blocks, etc. because the pain from these illnesses and to control the dysautonomia is too great.  The medical bills are way too great and donations are much needed to help pay for these costs just keep me functioning and alive day-to-day.

I also have numerous doctor appointments, procedures, etc. which are not always covered by insurance. I must keep a calendar just for them because I can’t keep track of all that I have. Basically, a day doesn’t go by that I don’t see a doctor or have a procedure. Unfortunately, since my disease is so rare and ‘special’, most of my treatment team is not in the local area. Some of my team is in Manhattan and they stretch to across the country to as far as California. So not only do I have to see them, but I must have money to pay for all the traveling expenses as well. We also must worry and consider all the time my dad must take off from work when my dad is with me at appointments because that is worktime that he is missing and essentially income that he is not making. Therefore, we take a double hit because we are being forced to pay for appointments/procedures that we can’t even pay for to begin with and yet dad isn’t even working to make the money be even able to try to pay for it because he must take me and be there. Even when they are covered by the insurance, it is not fully covered, and the copayments quickly add up as well.

My calendar is basically filled up every day with another medical appointment rather than any social event. Not only am I constantly seeing doctors throughout the week, but I spend at least once a week in the hospital undergoing a ketamine infusion and injections in my spine, as well as another day in the operating room getting my colon emptied because of my GI system being paralyzed. If my colon is not emptied, it is very possibly that my colon will rupture, my organs will further shut down, and my body will go into sepsis. I also spend basically 4 times a week in physical therapy because my muscles are wasting away and we try to keep the muscle wasting down to a minimum and my strength up to a maximum because it isa vital component of my care especially since I have a difficult time making my own oxygen needed for my muscles to work.

Most people think that if you have insurance that it covers everything. The truth of the matter is that insurance is only good when you don’t need it. We pay close to $3000 a month just for health insurance, which we are also having trouble paying for, and it doesn’t cover nearly all my required needs. Yet, we need this plan because without it, things would be so much worse. People ask me ‘why don’t you go onto governmental assistance?’ The truth of the matter is that I am on SSI and receive Medicaid. However, due to my illness and the specialists that I see, most of my specialists do not take Medicaid because they are so ‘specialized’ and can be choosy. Plus, Medicaid is only good in New York since it is “NEW YORK MEDICAID” and I have a significant number of doctors and procedures outside the New York area. As for Medicare, I am not able to receive it because I never worked a day. I did work when I was younger, but just not technically ‘on the books’ to count!’

The financial burden on us is so heavy. We really need to raise a lot of money in order to cover my medical expenses because it is so astronomical. I honestly would need to raise at least $100,000 because I need multiple operations, procedures, and other medical related expenses. As you can see, health insurance alone is $3000 and marijuana is $500 plus everything else. Just my current day-to-day health is so expensive that I really need funds to help me with that as well at this point because I am having trouble even getting that done now. I will also need money for the actual operations, as well as traveling expenses and for money to supplement to pay the bills because dad won’t be working during the time we will be away for the operations (like a month). So, we need to have money to live off of because we will essentially need a place to live for about a month (and that is just for one operation). In addition, I need Physical Therapy every day because I need to keep up my strength. Plus, due to my illness I can’t make my own energy anymore because I my cells get depleted so quickly. So, physical therapy is an essential aspect of my care. It is imperative that I go and this alone costs $100 daily ($500 per week). Without the PT, I will deteriorate and die. The doctors really think this is one of the major factors that is keeping me alive.

I am so tired of hurting. I am so tired of feeling like I am left in the dust. I am so tired of trying and failing. I am so tired of building up my hopes that I am going to get well, then have the carpet pulled out from underneath me because we don’t have the funds to continue with the arrangements. I am tired of suffering. I am tired of watching the whole world move on and I can’t. I am tired of watching others have a life and I am in both physical and emotional Hell that I can’t escape.

For someone so young, I have been through so much. I am tired of watching everyone move forward with their lives and I am left in the dust. I have lost everything I have ever worked for and dreamed of. I was a competitive figure skater, a 4.0 student in college, etc. planning on going into medicine, I had friends, I had dreams of having a family and everything else that a ‘normal’ person would have. Yet, this illness changed everything. For someone who had such big plans for herself to being happy and for making a difference in the world… I fell flat on my face.

I learned the hard way that “health is wealth and if you have your health… you have everything!” I basically lost everything. I lost my friends, life, career, money, etc. Not only do I suffer in excruciating pain physically daily 24/7, but the emotional pain that this illness brings is just as bad. I have become not only a burden to myself, but to my parents. My parents are the only family that I have and are in their 60s. I am fortunate for all that they have done, but I am so fearful of the day that they will not be here because I cannot live on my own, as I cannot care for myself 100%, cannot take myself to appointments, and cannot bring in a salary to pay the bills. It scares me half to death that I am so sick because I know that they won’t be here forever, and yet, they are my entire life because without them I am nobody.

I also don’t want to be a burden to them anymore. They are at the point in their lives where they should be enjoying themselves. Yet, they work like dogs trying to make ends meet, which is virtually impossible. Even by working every single day of the week and countless hours too, we are unable to pay for the necessary medical expenses just to get me well. The medical expenses have drained us so much that we are in such financial debt that we cannot pay our mortgage anymore, utilities, etc. Even putting food on the table is not always doable. It is horrible that no matter how much they try to work (Dad works from 4 AM to 7 PM every day basically) that we don’t have the funds to even pay our bills.

In short, I am in desperate need of help. We have exhausted all methods of receiving help and trying to get me the medical treatment that I require. Setting up this account was very difficult because we were always a family that “gave” and never had to ask for help. However, unfortunately, we have gotten in over our head in medical expenses and in desperate need of financial help to pay for my medical expenses. It is hard to ask for help…. As we start this new year- we are in debt over 100,000. We are even having difficulty paying for our health insurance on a monthly basis and it would be a disaster to have to go without it.

I am very humbly asking for financial help, no matter what size the donation. Even if you are unable to donate, please pass on this site, send a few prayers our way, and if you could read my story through my blogs. Thank you for taking the time to read this. I am praying that my life will only get better so I can live a long and happy one. To better understand what I am going through, please watch the movie “Miracles from Heaven.” It is so close to my story.

I am also selling bracelets as shown below to help me raise money for my medical expenses. The suggested donation for a bracelet is $5. If you would like one, please email me at femirsky@gmail.com.

Leave a comment »

February 21, 2016

12744069_10101814598297450_7470072279845528104_nHi-

 

I know it has been awhile since I have written, but I have been so busy that I haven’t really gotten a chance to write.  I haven’t been feeling well and then on top of that nothing has been going right.  But then again… what else is new with that?  Seems like the story of my life.  Seems like the harder I am trying to get better… the faster I am falling.  It is like I am drowning and no matter how hard I try… I can’t come up for air because I just keep getting bombarded with bad things happening.  But I still try to keep positive bad and still keep and pray that one day I will be “normal” and healthy.  I still am hoping that one day I will still be able to be independent, have a family, be able to live out my dream career of being a ‘doctor’ so that I can help others, and most of all… be happy and pain free.  I keep telling myself “if there was no bad luck, then there would be no good luck.”

 

I was supposed to be leaving tomorrow for Nebraska so that I could see the specialists for my Gastroparesis.  I was going to Nebraska because not only are very few hospitals equipped to perform intestinal transplants and rehab, it is also one of the best in the USA. Plus, there are only about 6 hospitals within the USA that perform multivisceral transplants and since it is 99.9% sure that I will need to undergo one because my entire GI system is basically ‘dead,’ Nebraska Medical Center is one of the six that perform them.  I know it sounds strange to be saying that I will be going to a place like Omaha, Nebraska for such a difficult operation, but the doctors that I am seeing there are supposed to be top-notch.  In fact, they have been recruited from other areas of the world to work there, one being Canada. This hospital and doctors are known to see only the sickest patients and the ones that they say “there is no hope for!” So many people go there as a last resort because they have been told that “there is no hope” or “nothing else can be done.”  Yet, this hospital has shown them that miracles do happen and with appropriate treatment and through their help, they can be helped.  So many people that were given death sentences are alive because they went to this hospital.  I am only hoping that I will be so fortunate.

 

When you go to a hospital like this, you really become a family with the other patients, staff, and doctors.  It is only a select number of patients that go to a hospital like this because like I said before it is really for the ‘sickest of the sick.’ Therefore, it is place where a lot of the patients are experiencing many of the same symptoms.  The diseases may not be identical, but what each patient and family is going through is basically the same.  So it is not only a place where you receive medical treatment, but it is a place where you can feel comfortable because you don’t feel so “alone!” Other people know exactly what you are feeling and what you are going through.  It really takes a load off your shoulders when others can relate. In fact, even the doctors and nurses will call you even at home to check up on you.  The people become so close there that even when they do get better, they still remain in touch with each other (including with the staff) and they continue to know all about the achievements that are happening in each of their lives… whether it is a graduation, marriage, birth of a child, etc.  After all, without this place they wouldn’t have been able to accomplish all of this… so they are extremely grateful.

 

I really feel comfortable going to this hospital because of the way the staff (both nurses and doctors) treat their patients… not just when you go there and become an actual patient in the computer, but before you even get there.  When the hospital got wind of my story, they were the ones who called out to me and reach out to me so that I could come to them.  Even though I didn’t go to them right away because of expenses and I figured possibly I would do better in bigger and better well-known hospitals like Cleveland Clinic or Cedars Sinai Hospital, they would continue to call me and follow-up with me to see how I am doing and everything.  No other doctor has ever called me consistently (or even at all) just to check up on me and to ask if I am ‘ready’ to come to them yet.  But after careful thinking and after speaking to them numerous times… dad and I decided that this would probably be the best place for me.

 

So I was originally scheduled to leave tomorrow for the big trip to Nebraska. We knew that the plan was to get the colon removed even though my entire GI track is basically ‘dead!’  But since the transplant is extremely dangerous and is known to be one of the most dangerous transplants a person can have (the only other transplant just as dangerous is a lung transplant), we were going to try to just remove the colon and see if maybe I can gain some weight and get stronger before undergoing the mutivisceral transplant (removal of small and large intestine, stomach, pancreas, and liver).  However, it was all up to the small intestines and they wouldn’t really know the exact plan of action until they got inside.

 

They are hoping that it is just the large intestine that is causing the main problems and if they remove it, I might be able to buy some time with the other organs because they might not be as bad.  The large intestine is leaking toxins and has obstructions, which are poisoning my other organs (including my heart) and shutting them down.  However, if the small intestine is just as bad when they go inside, then I will need the transplant sooner rather than later.  This is the reason why I go to the hospital every week to get my intestines cleaned out in the OR.  Nothing passes through… especially in the colon.

 

So the only way things basically come out of me is mechanically in the hospital in the OR. My colon is so ‘dead’ that there is no peristalsis basically at all.  They have me giving myself daily injections to try to stimulate the peristalsis, but it really doesn’t do much because it is too far gone.  My colon is also way too dilated and distended that it literally takes other nurses and staff to help the doctor navigate the tubes and everything because they have to hold onto the intestines and everything because of how ‘floppy’ they are.  It literally takes the doctor over an hour just to get to the cecum.  In one week, I can get so filled up with fluids, debris, etc. that it is literally impossible to remove everything.  But the doctor does as much as he can because otherwise I would continue to fill up on toxins and they would poison my organs and I will die.  In addition, it also makes me extremely distended because nothing passes through and by the time the week ends and it is time to have the procedure, I basically look like I am pregnant.  So I am extremely uncomfortable and in agony without him cleaning me out.  Finally, they do this procedure because they are afraid my intestines will rupture since nothing passes through and I will then go into Sepsis.  That is the last thing we need on our hands because then we will really have an emergency and a crisis on our hands.

 

But unfortunately we had to cancel the trip and postpone it to March 20th.  Actually the doctor canceled us because he had an emergency.  In a way though, we were very lucky that he did because if he didn’t… we had no idea how we would get there anyway because we didn’t have the funds to go.  As much as we tried to pull everything together and try to raise as much as we could, we didn’t receive as many donations as we would have liked or was hoping for.  We are extremely thankful for the ones that we did receive, but unfortunately what was did receive was not nearly enough to pay for what was needed.  So we are only hoping that this extra month will help us get the additional funds that we need so that we can go and get to Nebraska.

 

12592430_10101802444653450_118780743822236147_nTo make matters worse though, by postponing the trip one extra month it cost us even more money.  But we really had no other choice though because the doctor wasn’t going to be there for the original date anyway.  Even though the airline was willing to ‘waive’ the cancellation fee because I spoke to supervisors and had letters stating how it was for a medical reasons and out-of-my-control that the change was needed, I still ended up paying a whopper. These plane tickets originally were already very expensive… like close to $1000 each way per person.  But now with the change in days, they charged me another $700 because of the change in price. When I tried to complain, there answer was “But at least we saved you the cancellation fee, which was $200 per ticket.”  Gosh… but still… when money is tight that $700 is A LOT!!

 

When it rains it pours.  Things definitely don’t go my way because I am now having a problem with the insurance company getting my morphine approved. This illness is so painful and intense that many pain relievers are not really effective, leaving you with the feeling that your body is on fire and in so much painful agony.  On the McGill Pain scale, which is the scale that doctors use to measure pain intensity, RSD is the most painful disease known to medicine. It ranks higher than even natural child birth and amputation.  Therefore, it is important to remain on the Kadian because it is one of the very few drugs that has been helpful in treating this illness.

 

The health insurance refuses to approve it and I desperately need it because not only is it one of the very few medications that work on me, but I have severe autonomic dysfunction and any change in the amount of dosage wreaks havoc on my body. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.  I am on lots of medications, as I take over 50 pills daily.  However, this is one drug that I cannot have a change in dose because the slightest change is greatly affected and will send my body into extreme chaos.  It can literally kill me because of the autonomic dysfunction.  I have tried in the past to go down on the amount of morphine taking because who wants to be on medication and I wanted to really see how much it was helping, as well as if I could do without it and the just going down the littlest amount was sending my body into severe autonomic dysfunction.  There was no way we could continue to go down lower.
Even in a normal person you cannot just ‘stop’ a medication like morphine because you will have severe withdrawal and side-effects that can even lead to death.  But with someone like me who is so very ill with dysautonomia along with other problems, it is definitely sentencing me to immediate death if they stop it.  It was already established awhile ago (even before this al came about) that when the time came to come off these drugs, I would have to be placed into a coma because otherwise my body wouldn’t be able to handle it and I would probably end up dying.  So for the insurance company to just stop authorizing my medication… it is like they are murdering me.

 

The doctors have been trying to appeal it many times and been on the phones constantly with them trying to explain how important this medication is to me and how I am not just an “everyday typical” case.  I have also written letters and we have even contact the New York State of appeals as well.  But the insurance company is still reluctant to approve my medication. But the fact of the matter is that I can’t live without this medication because it is drug that is making me able to live and manage this disease to a point.   and we have no idea what we are going to do because it is so expensive.  It is like $1300 for this medication and of course we have no way of affording that.  But without it… I am going to end up dying.  So that is another reason why we are desperately needing all the donations that we can receive.  I just don’t get these insurance companies.  We pay so much in health insurance and yet they don’t cover squat!

 

I also recently got into a car accident because a guy ran a sop sign and as a result, I ended up tearing my rotator cuff and injuring my ribs and sternum extremely badly.  They aren’t sure if I have a slight break in the ribs or sternum either, but it isn’t like they can do anything for it anyway so it really doesn’t matter per se because the rehab is the same for either. They took Scooby and me to the hospital by ambulance, which was a new adventure for both of us.  Dad met us at the hospital because he stayed behind with the car to make sure the tow truck came and since he wasn’t injured.  Never a dull moment.  We are so afraid though that this now also spread the RSD badly because it spreads through trauma and this was a very traumatic experience.

 

Thank goodness though that Scooby was OK.  If he wasn’t seat belted in his car seat, he wouldn’t be here today.  I am such an advocate for seatbelts and car seats for dogs.  I am so fortunate that he was in his car seat because he wouldn’t be here otherwise.

 

I also recently had surgery on my ear.  I had to have it closed up because it split open.  I knew that It was probably going to have to be done, but I was hoping it would possibly heal on its own.  We don’t know exactly how it happened because I never wear big or heavy earrings, but we think that since I down turn or move when I sleep or anything because of the pain and my illness… eventually the pulling and rubbing on the pillow/bed just kept moving the earring enough to tear the ear into two.  I was supposed to undergo this surgery over the summer, but just when we had it planned… I ended up in the hospital having surgery to repair my hip, femur, and pelvis.  So there went that.  But I was hoping that maybe during this time that it would posisby heal… but obviously I was wrong.  I knew deep down it was only a matter of time and the time finally came.  I couldn’t wait any longer and therefore I went about 2 weeks ago to have my ear sewn back together. I can’t wait to be able to wear earrings again, but of course I will have to get my ears pierced again and to be honest…I don’t know if I can do that again.  I became a chicken.

 

12698520_10101805065421410_3414061955684893234_oBut before I end this blog, I want to put some good stuff in it so it isn’t such a bad and depressing blog.  My birthday was about 2 weeks ago (the 7th) and it was one of the best birthdays that I have ever had.  I can’t remember the last birthday I had that I could say that to.  I had friends come over the house to celebrate my special day with and it really was a dream come true.  I really never thought that it was going to happen because I am so used to disappointments.  Yet, everyone came and I had such an amazing time.  I can’t thank everyone for making my birthday so wonderful.  I can’t tell you how happy it made me and every time I think of it… it just brings a smile to my face.  I only wish it will happen again.  But just like I say every birthday… next year maybe I will be fortunate to be able to eat birthday cake.  I did take a little piece though even though I suffered for it later on because it made me so very sick.  I did make a promise though that when I do get better I am having one huge celebration.  So don’t worry… all will be invited.

 

12622540_10101800774759930_7628701112701094824_oScooby has also been doing wonderful.  He has started agility training.  Not only is he certified as a ‘service dog,’ which is something for me and he works extremely hard for it.  I always get compliments on how well behaved he is and people are shocked that he is only 11-months old.  He really has great manners and a great behavior, as I even taught him to wash his paws at the sink.  But I figured that since he works so hard, he needs some fun too.  He loves jumping and therefore, we started him with agility training.  He absolutely adores it and he was so good at it… even the the first time he tried it.  I love watching him do it because it gives me so much pleasure to see him having fun and being happy.  It also gives him confidence like you wouldn’t believe.  I have seen a change in him like night and day ever since he started this agility training. He is such a great runner and jumper.  One day I will be able to do that too and we can go running together.  I can’t wait for that day to happen.

 

Well… I guess if I want that to happen, I first have to get well.  If you can please help in any way possible, we would really appreciate it.  Whether it is through a donation (even a simple dollar is greatly appreciated because a dollar from you and a dollar from someone else adds up, and it is one less dollar than we have to come up with), by passing my website link along to others and asking them to donate and help, fundraising, or even giving me a fundraising idea… it would be greatly appreciated.  My websites to pass along are www.FallonMirsky.wordpress.com or www.Gofundme.com/help4Fallon.  Feel free to also email me at Femirsky@gmail.com.

 

I really want to apologize for still asking for donations after all these years.  I know I must sound like a ‘broken record’ already and you are probably even tired of hearing my story already.  People sometimes think that I am doing better because I ‘look’ better.  But believe me… appearances are deceiving.  Behind this façade is a very ill person who is hanging on her last thread.  I just want to be as normal as possible and I don’t want to have people feel sorry for me.  I don’t want to be sick and I feel that if you ‘look good’ than you ‘feel good.’  I also don’t want people seeing the true me and feel sorry for me.  So I try to put on the most makeup and dress as best I can (even on the worst days… you will never see me without makeup or being dressed because I always try to hide this illness and all the unhappiness and pain that accompanies it at all cost).  Plus… I get dressed every day to look my best because I can’t give in.  I want to be as ‘normal’ as possible and I also know that if I give this disease an inch it will take a foot.  So I have to fight in every way possible so it can’t takeover. Finally, all the pictures that I post are basically airbrushed.  I will rarely, if ever, post a picture that is not airbrushed because like I said before… I want to look my best and be as ‘normal’ as possible.   So I just wanted others to know all this because it has been mentioned to me ‘why am I still asking for money if I am well’ and I just want to be up front with everyone that I am far from that. I just don’t want others to see the real me.  In fact, I compare myself to an ogre as well as a dinosaur (Stegosaurus).  The only difference between them and me is that I don’t live in a forest and I am not extinct yet…just endangered.  I am not only ugly, but I change colors (blue, red, purple, even black in a split second) and my spine protrudes like a stegosaurus.

 

12698598_10101801722849950_2134399412394337505_oBut what is keeping me going and helping me keep my strength is my dog.  I can’t tell you enough what Scooby has done for me.  If I didn’t have him, I probably would not be here today.  He has done so much for me that even the doctors have agreed that I probably would not have lasted the way I have if it wasn’t for him.  In fact, the doctors accredit Scooby for surviving the surgery I had to repair the fracture when I broke my femur, pelvis, and hip and had to have the rod, screws, and plates placed in me.  Everyone was telling my head surgeon not to operate because I would die on the table and then even if I did make it through the surgery, I would never recover.  But look who is still here!  Scooby and I have been through so much together from going through the operation when I had the surgery for my hip, femur, pelvis (he was in the OR and recovery room) and then spending 2 weeks in the hospital with me, going into the OR and recovery room every week when I get my intestines cleaned, going to appointments, going on planes, going in ambulances, traveling the country, etc.  He is my best friend and partner-n-crime.  He has his own car seat and sunglasses to go cruising.  You will rarely see one of us without the other.  In fact, I go to Physical Therapy… I am working my butt off at times while he is sleeping away on the table.  He absolutely loves doctor tables and everyone loves watching him leap onto them.  He picks whatever table he wants whenever we go to the Physical Therapy place.

 

Scooby is just a one-of-a-kind dog and I am so lucky to have him.  He looks like a real life teddy bear and so many people think he is a teddy bear until he starts moving.  I dress him up everyday and he is just like a little baby.  He even has a stroller.  I may never be able to have my own family and a kid… but he’s my precious baby and he is going to keep me going.      I can’t believe he is going to be 1-year-old next month.

 

Thanks again for all your support and encouragement.  I can’t thank you enough for everything that you have done.  Your prayers, support, and encouragement is very much appreciated.

 

Love always,

Fallon

 

Leave a comment »

January 25, 2016

12593964_10101792045673090_1617561401470734804_oHi-

 

Happy New Year everyone!  Just wanted to say HI and let you know all that has been happening because like usual my life is like a Soap Opera because there is NEVER a dull moment.  I really thought that 2016 was going to be my year, but apparently this year has been nothing but headaches, disappointments, and downfalls.  I have been trying harder than ever to get better, but the more I try… the harder I am falling.

 

I am supposed to be in Nebraska as we speak right now.  But unfortunately, this winter blizzard that crippled the East coast has also canceled all flights as well and therefore, we of course couldn’t get to Nebraska.  In a way it was kind of good that Mother Nature was in a fury because it helped take away my ‘fury.’ The reason I say this is because if the blizzard didn’t come, we weren’t probably going to be able to go to Nebraska anyway because there just wasn’t enough money to go.  As much as we tried to raise money and save as much money as possible, it just was not nearly enough to make this trip.  I really appreciate the few donations that I did receive, and I can’t thank the people who did donate enough.  These people will forever be in my heart because I know how much they wanted me to make this trip to Nebraska so that I could get the lifesaving treatment to save my life.  However, between the medical expenses that I have day-to-day at home for medications, doctors, procedures, treatments, etc. there just wasn’t any money to use for the trip.  We can’t even afford those day-to-day amenities to keep me alive.  So those donations not only helped in getting me the day-to-day care that I needed to stay alive, but we are also going to be hopefully going back to Nebraska in February and will use the money on that trip as well.

 

So I am kinda glad in a way that the trip was canceled and it was not because “I” canceled the trip.  At least the power was taken away from me so I didn’t have to feel too horrible in feeling that the reason that I wasn’t going was because we couldn’t afford it.  It is such a horrible feeling to know that there is something out there that can literally save your life and yet, you are unable to get it because you can’t afford it.  It is like someone is just pulling the carpet out from underneath you.  It really is the worst feeling imaginable.  I don’t want to die and yet, I can’t afford the treatment that I need to save my life.  I am literally watching myself die.  It isn’t fair.  It isn’t fair to my parents or family.  What did I do to deserve this?  The harder I try to get better and stronger, it seems that I am falling harder and faster.  I try to do the most I can because I know if I give in to this illness even a ‘inch,’ it will take that inch and even more than that.  I can’t let it take hold of me.

 

But we are now scheduled to go back to Nebraska on February 21st, and I am hoping that NOTHING will stand in the way of that trip.  I hope we will have no more blizzards or emergencies.  I am also hoping we will definitely be able to afford this trip now because it will give us a few more weeks to raise the much-needed money.  So if you have any ideas of how to raise money or can spread the word, I would really appreciate it because I really MUST get to Nebraska then.  You can always email me at Femirsky@gmail.com with any comments or questions.  Please spread my website at www.gofundme.com/help4Fallon so that others can donate because even one dollar is one less dollar that we have to come up with.

 

I just now really have to worry about keeping myself alive until February 21st, which is getting to be harder than ever.  I am really not doing well at all and I honestly don’t know how much more my body can take.  I am literally holding on by a string.  We knew that my organs were failing me and shutting down, but now my heart is doing especially bad and I need heart surgery and possibly a heart transplant.  Gosh… I basically need a whole new body already.  I need a new GI system (stomach, small and large intestines, liver, pancreas) and that is why we are heading to Nebraska, and now my heart is really doing poorly.  In fact, my heart is doing so badly that they are worried that I am going to go into heart failure anytime.

 

I have been having so many symptoms and things are just getting worse and worse.  To make matters worse, the health insurance company is also being totally horrendous and not cooperative at all.  I can literally drop dead at any moment and yet, they are giving us such a hard time with authorizing tests.  Even when a report from one of the tests that I went for specifically states that another type of test is warranted, the health insurance company is still refusing to authorize it.  In fact, even when the health insurance states pre-requisites that I must undergo prior to going for the test that I need (such as a different test prior even though we definitely don’t need it), the health insurance company will still not authorize the needed test after we do what they said.  I can’t understand it because we did the test that they required first and then they go back on their word.  They then tell the doctor to wait another 45 days before applying again for authorization… like I have that time?? I can’t stand it.

 

I am really battling against the clock.  So many things are happening and to be honest… I am freaking myself out.  I am usually a strong person and I don’t let things get to me because I am ‘used’ to it.  Plus, with everything that I have gone through, it really can’t get much worse in ‘scariness.’  You know?  But to say that I am ‘scared!’  It really means something.  In fact, it has gotten so bad lately that I sometimes just go to bed just praying that I won’t open my eyes in the morning.  My body is sooooo tired and tired of fighting.  I honestly don’t know how much longer I can take and how much longer I can go on.  I keep trying to push onward and such… but it is getting impossible to gather the strength to do that.  Thankfully I have my supporters who give me the strength to do that though because without them, I definitely wouldn’t even be able to open up my eyes in the morning.  I can’t even tell you how hard even that simple little task is to do.  My body is just so worn out.

 

That is why I am so desperate for help and donations.  I don’t know honestly how much time I have and how much longer my body can hold on.   It is basically at the point that if I am not helped soon, it is definitely going to be too late. Time right now is way to valuable.  It is basically at the point that every day and every minute counts.  So please… please help me get the donations that I need so that I can get the lifesaving treatment that I desperately need.  Not only do I need the day-to-day treatments (i.e. meds, appts, procedures, etc.), but I also need the procedures in Nebraska (removal of the colon and transplants) and ketamine coma in Mexico (which will ultimately reverse this entire disease).

 

I look at myself in the mirror and I don’t recognize myself.  People say I ‘look better’, but little do they know it is because of my illness causing all the fluids to build up in me and become swollen.  I have gotten edema everywhere.  My shoes don’t even fit on my feet anymore.  I have gained like 15 lbs. in fluid.  It is horrible. I am so swollen that you can make fingerprints in my body everywhere and my legs look like tree trunks.  I even have blisters and sores opening up on my skin along with the skin being so shiny because the skin is overstretched from the fluids.  It is so weird.  The doctors are even not just afraid of the edema, but of the sores too now because they can easily become infected now too, which will be yet another problem.  Never a dull moment.

 

The doctors have been massaging my legs and wrapping them in bandages to try to keep the swelling away, but even though the wrapping does help to a point, the swelling comes back to an unbelievable amount wherever the bandage ends.  The edema swelling is everywhere in my body… especially in both legs.

 

The edema is so bad that I hate drinking.  Even when I wake up and before I drink, I am completely swollen.  However, as the day goes on and on… the swelling just gets worse and worse until I look like I am 9 months pregnant and like the Good Year Blimp.  The doctors are so worried that I am going to go into congestive heart failure or something because of all the fluid.

 

I was so desperate to have this fluid to come out of me because I am so uncomfortable and in pain that even though I knew that I couldn’t take a diuretic without being prescribed one by a doc, I went to get a tea that was supposed to do the trick.  After doing research, I found that there was a tea called DANDELION ROOT that was used as a diuretic.  So I did go out and bought it.  However, I couldn’t even get one sip down.  It was absolutely horrendous.  So this plan was not going to work.

 

The doctors ruled out that I don’t have a clot in my body causing my legs to swell.  In a way that would have been way too easy.  At least we would have had an answer.  But, I did have a DOPPLER and it was ruled out that I didn’t have a thrombus in both sides even though they couldn’t augment the left side.

 

The doctors have no idea why I am having all this fluid build-up.  When I have my intestines cleaned out every week in the OR because they are totally dead and that is basically the only way they can be ‘emptied,’ the doctors see all the fluid in my colon and intestines.  They see how loaded the organs are and in fact they are so overloaded that as much as they try to eliminate some of it, there is just way too much to do so.  They have no idea why my fluids are just remaining in the GI system and not being absorbed where they are supposed to go. They are thinking it has to do with the GI system being ‘dead’ and that is even more reason why I have to get to Nebraska ASAP because I need to have my colon removed and have the transplant.

 

The doctors know that the fluid has to come out of me though because not only am I very uncomfortable, it is detrimental to my health to even have all this fluid in me.  So all the doctors agreed that I needed to be put on a diuretic, but they were all so scared to do so because of my heart and blood pressure.  I have a bad heart especially with the electrolytes, and I also have very low blood pressure (70/50). The doctors were all especially weary about giving me the diuretic because diuretics have the potential to drop your blood pressure and also depleting your electrolytes. With me that could mean death because my blood pressure is already so low and my electrolytes are all very low as it is.  So as much as they all said I needed one, they were all handing me to each other because no one wanted to take the actual responsibility of prescribing it because of my complicated health.

 

Finally, they sent me to a kidney/renal surgeon to see what was going on and why I was filling up with fluid so much. This doctor did put me on a diuretic, but guess what?  This diuretic didn’t work.  Now they don’t know why it isn’t working especially after even raising the dose.  For someone with my size, it should have worked right from the beginning.  When we raised it and it still didn’t work… it put up red flags all over the place.  After looking at my blood work too, I had an elevated BUN, which showed I was dehydrated, which didn’t make sense either because of all the fluids they see in my body.  So they sent me for more tests of course.

 

I went for an emergency CT scan.  Luckily for all these tests lately (whether it be the CT scan, Doppler, etc.) I have been put to sleep.  They don’t want me awake because I can’t sit still, and I also usually can’t tolerate the test at all.  I couldn’t tolerate the gel and the probe during the touching my skin and the pressure that was put on me during the Doppler, and I can’t tolerate the contrast that is given during the CT and MRI scans because all this stuff sets off the autonomic dysfunction.     So at least when I am sleeping during these tests and they do what they need to do… we hopefully are not setting off the autonomic dysfunction.  Nothing is worse than when the autonomic dysfunction is set off.  I can’t stand it. I always tell the doctors “do whatever you want, but don’t do ANYTHING that will set off the autonomic dysfunction.

 

I am so nervous about why I can’t go to the bathroom because I was always told that the dysautonomia might get worse to the point that I might have to catheterize myself in order to go to the bathroom.  If I ever had to do that to go the bathroom, I don’t think I could handle it.

 

Well from all these scans we did find out some things we didn’t know.  I of course have to go for more tests because we found so many new things out like we found out there is now a mass on my liver and nodules in my lung.  I have always been having problems breathing, and it felt like I had something in my lungs like water, but now with this scan it was officially confirmed that there was stuff seen in it.  In fact, when I breathe or cough, you can even hear me gurgling at times.  The mass on my liver is also significant because it is about ½ an inch big.

 

However, what was most startling and not expecting to find was that there is something wrong with my aorta.  I have aortic vascular calcifications.   This is a condition in which calcium deposits form on the aortic valve in the heart. These deposits can cause narrowing at the opening of the aortic valve. This narrowing can become severe enough to reduce blood flow through the aortic valve, a condition called aortic valve stenosis.  Old people usually get this and can lead to heart failure.  So now the doctors are talking about replacement of the aortic valve.  The doctors also said that having these calcifications in the aorta probably means I have atherosclerosis in the arteries of my heart and brain, which increases my risk for heart attack and stroke.  Never a dull moment.  So now we have to look into this now too.

 

But when I went for the CT scan, it further confirmed that my GI system was gone because it showed that I had severely distended loops of small bowel that contained fluid.  Like we didn’t already know that.  This was bad news though because we knew that the large intestine was completely dead, but we didn’t think that the small intestine was as bad as it was.  We thought perhaps it might be able to be saved, but at this point, it is highly unlikely.

 

In addition, I am scheduled for minor surgery in 2 weeks.  Of course with me, there is nothing that is considered “minor” surgery.  But believe me… this is no biggie.  My earlobe split in half and they have to repair it because it is getting infected. It was supposed to be repaired over the summer, but unfortunately there was a change of plans because I ended up breaking my hip/pelvis/femur.  So of course that was put on the back burner to repair my ear.  I also thought that maybe it would heal on its own.  I guess that was wishful thinking because about 2-3 weeks ago the ear literally completely ripped in half.  So now I have no other choice but to repair it.  I just hope that it doesn’t cause any other problems.

 

So that is everything in a nutshell.  Guess I just now have to hang on and see what is going to happen.  I have been having really high fevers, which is really not common for me. So we definitely know I have an infection somewhere, but we just don’t know where.  I just hope and pray that I make it to Nebraska in February and we will have the money to go.  I need this trip and trip to Mexico more than anything in the world.

 

10295290_10101791189154560_541347206919048292_oThis was some snowstorm.  They said it was the second to the worst snowstorm ever, as we missed it by a tenth of an inch.  But to be honest, it didn’t really seem as bad as it was.  This was Scooby’s first snowstorm.  He absolutely loved it.  We couldn’t get him into the house.  He kept running in and out and jumping through the snow.  I never saw such a happy dog.

 

12485895_10101784830202950_5659592411651000085_oSpeaking of Scooby… He turned 10 months this month.  I can’t believe how fast time is flying.  Gosh… If I didn’t have him, I would certainly be at a loss.  He is like my best friend. Scooby and Missy are my life!!!  He loves to go to doctors with me and sits on the doctor’s beds with me.  Even when I come back and fall asleep at my dad’s office after a procedure, he babysits me.  It is so funny.  It is supposed to be me taking care of him, but he watches me until he falls asleep with me.  LOL

 

12471564_10101786399208650_5497373578098670274_oI also had a very special visitor this past week.  My 3rd grade teacher visited me and she not only gave a great visit because I loved seeing her, but she is a phenomenal cook.  I always told her how I am in awe of her cooking because she is always making these delicious snacks, meals, desserts, etc.  I told her that when I get better, she is definitely making me a great big cake or something.  So you know what?  She not only came, but she surprised me and brought over her cupcake maker.  She brought over cupcakes and then we decorated them.  I had such an amazing time.  When she opened up her icing kit (which looked exactly like a huge sewing kit), I couldn’t believe my eyes how many nozzles there were and how each one did something different.   I can’t believe how many ways there are to decorate a cake.  It really was so much fun and I really hope that we can do that ok.  Not only was it fun to do, but the cupcakes were delicious too.  It was one of the best days of my life.

 

My birthday is coming up in 2 weeks.  February 7th is not just going to be a special day because it is the 50th Superbowl Sunday, but it is also my birthday.  Maybe I will get the best gift ever… which is a miracle of getting better.  I doubt it because every time I wished for that for my birthday or asked for it for the holidays…. It never happened.  So why should I think it will be any different now?  I used to hate having my birthday on the weekend and if I was younger, I would have been going bizerk if it was on the same day as Superbowl Sunday.  I was always a person who had to celebrate my birthday.  But now I have nothing to really celebrate and no one to celebrate with (besides my parents, Scooby, Max, and Missy), so it just will be another ordinary day filled with pain and suffering.  I can’t even go out to eat or do anything special to celebrate it with (especially when you are strapped for funds and you can’t do anything anyway because this horrendous disease has robbed you of everything that you can possibly have).  So at least when I don’t have anyone to celebrate with, I can blind myself and say it is because of the football game.  Gosh… I can’t believe how many people walked out of my life when I got sick.  You really learn who your true friends and family are when you get sick.

 

12473779_10101785655174700_5433104288711244614_oSpeaking of my parents though, we basically sold everything in order to get as money as possible to pay for the medical treatments that I desperately need.  However, I always wanted an anklet and my parents gave me my mom’s anklet that my dad gave her on September 9, 1971.  It had two hearts (each had his/her name on it) and the date on the back.  I will wear it forever, and ever and treasure it forever and ever.  I can’t believe they gave me something so precious.

 

Well… I hope everyone made out ok with the blizzard (for those that were affected).  I just wanted to update on all that is happening.  A lot has been taking place and also wanted to let you know about the trip to Nebraska.  I also wanted to ask for your help in trying to raise funds because they are so desperately needed.  I am really running out of time and if I don’t get the treatments soon, I don’t think I am going to make it much longer.  If you have any thoughts in raising money or can spread my link (www.gofundme.com/help4Fallon), I would really appreciate it.  Please feel free to email me with any questions or comments at Femirsky@gmail.com.  I will appreciate any ideas.  Thanks again for all your help and support.  I definitely wouldn’t have made it this far and been able to hang on this long without you.

 

Love,

Fallon

 

 

Leave a comment »

January 15, 2015

12485890_10101783904218630_7164818205724693554_oHi-

 

How are you?  Figured I would touch base and update on what has been happening.  Thought that this year was going to be different and that 2016 was going to be a brand new start to a brand new happier life, but unfortunately, I am not doing too well.  I am in fact doing pretty horrible.  Every time I think the I am getting better and making strides to improvement, I am falling harder than before.  I thought that I was on the track to recovery but I guess recovery is going to be a lot harder than ever and harder than I ever thought could ever be.

 

I am scheduled to be going to Nebraska a week from Sunday. So hopefully on Sunday, January 24th, Scooby, Dad, and I will be off to Nebraska but I highly doubt that will happen.  We are really short on funds, but as much as we are trying to raise the money so that we can go (through donations, gofundme.com, etc.), it is basically a dead end and impossible.  We are going through money like water and it isn’t like we have a money tree in the backyard.  We are having a HUGE difficult time even paying out bills such as the mortgage, food, etc.  It is just horrible.  We can’t even pay the medical bills to keep me going just day-to-day.  It is horrible… but what can you do?? It is life.  I am still fighting, but it is harder than ever.  I am still hoping that things are going to turn around.  Mom and Dad played the Powerball in hopes of winning, but of course we woke up today still poor as ever.

 

I am really hoping that we are going to be able to go, but as it is getting closer and closer to to us leaving, it is becoming more clear that it is probably not going to happen.  We really don’t have the funds to go and of course we can’t go to Nebraska with no money.  I am so scared that we won’t be able to go because I need to get there so badly.  I am not doing well and there really aren’t any other places that can help me.  There are especially no other hospitals in the New York Area that can help.  So I really have no other choice but to travel, and there are only like 6 hospitals in the USA that perform the treatments that I need (the intestinal and multivisceral transplants).  Nebraska is basically the top-of-the-line in the field that I need.  So it is really imperative I get there because of how sick I am.

 

Something needs to be done because my GI track is basically in total failure and causing my entire body to fail.  I am leaking toxins into my bloodstream like crazy and we think that is the cause of my cellulitis.  My organs are all becoming intoxicated because of the intestines and failing.

 

I really believe that a lot of what is happening especially with the heavy pitted edema and cellulitis is being caused by my failed GI system.  I was not really a firm believer in “reflexology” but I definitely am now.  I was having really bad feet problem and severe pain.  So I ended up going to have reflexology and I never told the masseuse about which organs were ‘failing’ me.  Yet, when she was doing the reflexology, she was actually able to tell me the exact organs that were giving me problems and failing me.  It was amazing.  Then after she worked on me, I developed these problems especially this severe swelling and cellulitis infection about a day or two later.  So we really think that she released the toxins out of my GI system when she was working on me because she was able to tell which of the organs were affected by working on my feet and like reflexology does… the feet and the body are connected and therefore working on the feet can really affect the body.  So it is awfully weird that after she worked on those organs on the feet that I developed this severe infection.

 

The infection is getting so bad.  Not only do I have the severe swelling and pitted edema, but I am now getting really bad ulcers on my legs. I am doing really bad with the swelling and pitted edema.  They think I have cellulitis and have been giving me two doses of IV antibiotics like Anceft but it has only been once a week, and the doctor that was doing it isn’t really the doctor treating it and therefore doesn’t want to give it to me anymore.  The IV works like a dream, but of course after the day or two after the IV is done, the cellulitis and edema and everything else comes back.  I am on oral medication as well like Cephalaxen, but it doesn’t really work.  The only thing that really works is the IV meds… probably because I don’t absorb anything.  I have such pitted edema that I literally gained like 15 pounds in water.  It is horrible.

 

941011_10101781171275470_1007073089162923949_nI gained so much weight in water that I am so uncomfortable.  I am so swollen and you can make finger marks in me like crazy.  Not only do I have the pitted edema in my left leg where the RSD actually began and was the worst, but I have it now in both legs and also have water in my lungs as well.  It is really difficult to breathe at times and you can hear gurgling in my lungs when I breathe, as well as water in my lungs when I cough.  Never a dull moment.  The doctors have me wrapped in ace wraps because at least that takes away the swelling because of the compression.  But wherever the ace bandages stop, the legs get hugely swollen.  You should see where they stop… the leg is so swollen that it folds over the bandage.   It is the weirdest thing because my legs can look like tree trunks and be so swollen and yet when I put the bandage on, it shrinks down so much.  So at least we have that tool to compress my legs to back to normal.  But like I said before, wherever the bandage stops, I am in for huge swelling.

 

I am so desperate to get rid of this water weight because it is so much and I am so uncomfortable.  It is also causing so many problems, as I already said it is causing me difficulty in breathing and such.  The doctors all want me to take a diuretic to release the water because it is causing me a lot of serious problems, but no doctor is willing to take the responsibility to prescribe the pill.  They all put it off onto another doctor because of my medical history being so complicated and especially because my blood pressure is so very low already.  They are so scared that even though my blood pressure being significantly low (I.e. 80/60) is my normal and no matter what they do to try to elevate it (I.e. IV or anything else) it doesn’t work, they still refuse to give me anything because they are afraid that the diuretic will further drop my blood pressure and cause me further problems.  They are scared that I will literally have my heart give out, or that I will blackout and fall and break something else.  So they all just put the responsibility on each other and tell me that I need to see another doctor (specialist) so that they can put me on the diuretic.  Yet when I go to that specialist that they send me to, I am only then passed on to another specialist.  I am handed off like a ‘hot potato.’

 

I did go to an infectious disease doctor the other day because of the cellulitis.  He did not like what he saw and also agreed that I needed a diuretic immediately.  He was just about to prescribe the diuretic, but when I asked him if the one he is giving me is one of the ‘better’ ones in the sense that it had electrolytes and wouldn’t drop my blood pressure as much as the others would, he realized how low my blood pressure really was and decided that he was no way under any circumstances going to take the chance and give me any diuretics.  He said that he wanted me to see a “renal/kidney” doctor because my kidneys are also suffering and he said that the renal/kidney specialist will then prescribe the diuretic because he will know what to do with the blood pressure and electrolytes and everything else.  So like always… I was handed off like a hot potato to another doctor.  I am schedule to see him tomorrow (Friday).  So I will let you know what happens.

 

Something better happen because I can’t take it much longer.  I am so desperate to get rid of this water weight because I am so uncomfortable that I was going to actually go to the store and buy diuretics over-the-counter on my own.  But my parents wouldn’t let me because of my medical conditions and said that I was ‘nuts’ to be even contemplating such a thing.  I know that I shouldn’t have even been considering it, but I really can’t take it anymore.  I feel like I am walking with lead weights on my legs and I am literally gaining so much weight because of the edema.  Even in the morning before I drink anything and when my legs have been up the entire night, I have severe edema.  Nothing seems to help it.  So as the day goes on and on and I continue to drink, the edema only worsens.  I am getting so afraid to even drink anything because the edema is so bad even from waking up (when my legs were elevated all through the night and I haven’t drunk anything as of yet) that I don’t want to make them even worse. You know?

 

So since I wasn’t allowed to get any over-the-counter diuretics because of my medical condition, I decided to do the next best thing, which was to get a diuretic tea to see if that would work.  I did some research and found that there is a tea called DANDELION ROOT TEA that works as a diuretic.  So I ended up buying that to see if it would work.  I tried it once and spit it out after taking the first sip.  It was absolutely atrocious.  I couldn’t even swallow one sip.  It even smelled so bad too.  No way could I take that.  So I am stuck with nothing that could possibly help.  The only thing that could help probably is that diuretic that needs to be prescribed by a doc and I am hoping the doc tomorrow will be able to do this because I can’t make it much longer like this.  You know?

 

I ended up falling out of bed the other day.  I was sitting on the bed typing on the computer while I was talking to my parents and drinking my tea.  However, I ended up nodding out and tipping over because I was sitting at the edge.  I felt myself going over and of course I saw myself tipping.  Nothing is worse than when you see yourself falling.  All I could say to myself was “oh no” and when I finally ended up hitting the ground all I kept thinking was “oh no my hip” because I fell directly right on it.  I was so afraid that I ended up breaking it.  But thank goodness I ended up just bruising it.  I guess the rod saved me.  Thank goodness.  I guess being the bionic woman paid off this time.  So I guess I now have more healing in addition to all the other healing to do now.  I knew it was going to be a bad day because It was the 13th and that is such an unlucky number.  LOL.  In fact, earlier that morning I was just saying how much I am getting better to a point…well thought that I was.  LOL.

 

Thank goodness I had ketamine the same day that I fell down.  So at least I was able to get some relief from the pain and hopefully undo some damage if the RSD was stirred up in any more way because I am already having severe problems with swelling, discoloration and pitted edema, etc. but we don’t know how much is being caused by an active infection like Cellulitis or because of the RSD.  So I ended up going to have ketamine and nerve blocks and other things.

 

I have in a few hours the hospital to get my intestines cleaned out again.  It is just another day at the hospital.  Scooby of course will be going with us.  I really hope that they do a good job because I am suffering so much.  I wonder how long it is going to take them to start an IV this time because they have been having such a difficult time starting them lately.  It isn’t that they keep missing the vein.  It is that they are just being ‘dry sticks’ because I have been stuck so many times between getting my blood taken, having IV done, having ketamine drips, having my intestinal procedures, etc. that the veins just can’t take it anymore.  The veins are just overused and they just don’t want to give blood anymore.  Yet, when I went for the block in my back the other day, my back wouldn’t stop bleeding that they had to put so much pressure to stop it.

 

However, the doctors are wanting to put me on a blood thinner as well.  My clotting is too much and even though I take 4 baby aspirins a day, it is really not enough.  My INR and is extremely low and way below normal and between the really bad swelling and this clotting problem, the doctors are really fearful that I am going to develop a clot.  The doctors want me on a good blood thinner drug like PLAVIX or something on that lines but just like the diuretics, no doctor wants to take the actual responsibility in prescribing it.  So they keep saying it and yet nothing is being done.  So hopefully I will find a doc who is going to do something before something really serious happens.

 

Speaking of clots though, the doctors are extremely worried that I may have a clot even though the DOPPLER that I have went for has said that I don’t have a “thrombus!”  However, they were not able to do an “augmentation” in the left leg, which is where the edema is worse and therefore, it doesn’t mean that there is not a littler clot that can be just as dangerous.  They are worried that if I do have a clot that it can of course go to my lungs or something and something serious can happen.  My muscles in my legs and calves are so tight that they literally feel like clots inside.

 

Speaking about scans though, I still need to go for an MRI immediately too.  They saw in a CT scan that I have a massive obstruction in my intestines and that can be disrupting my lymph flow and also causing the edema and cellulitis as well.  The CT scan said that I needed MRI urgently, but even with the CT scan even saying that and then with the doctor prescribing it, the insurance company was reluctant to authorize it.  The doctor tried to file appeals, but the insurance company wouldn’t budge.  They said that they wanted other stuff done prior such as going for the DOPPLER and as a result, I have done all that they have said.  Yet, even with doing all that they have required before they said that they would authorize the MRI, they are still giving me problems.  It now came back that they want the doctor to wait 45 days before filing another MRI.  The doctor said, if we wait that long, I Will die!”  So we are in the process of appealing.  Hopefully it will be done soon because I really need this ASAP especially because I need to have it done by this coming Thursday because when I have the MRI done, I need to be put to sleep and that can only be done on Thursdays.  It needs to happen this Thursday because this will hopefully be the last Thursday I will be home because I will hopefully be leaving for Nebraska the Sunday after, January 24th.

 

12308513_10101742685426420_2534692069262126181_nI also have the appointment with the kidney specialist today later so we will also see what he has to say about my kidneys since my renal function isn’t so great.  Like I said previously, I need to be put on a diuretic and hopefully he will be able to help.

 

If that isn’t enough to worry about, I have an appointment on Wednesday with the plastic surgeon.  I ended up ripping my ear in half and therefore, I need it fixed.  It was ripping for awhile and I was supposed to have it fixed over the summer, but of course things changed when I fell and broke my hip/femur/pelvis.   I thought that perhaps I might have been saved and wouldn’t have had to go through with this procedure after all and perhaps it might heal itself, but I am never that lucky.  I was only putting off the inevitable because even though my ear didn’t cut completely in half for while, it finally did about a week ago. It is so painful and now I have no choice but to have to have it fixed.  So I am headed to the plastic surgeon on Wednesday for him to look at it and to schedule the surgery to repair it.  I have no choice because I can’t walk around with a ripped ear.

 

On a better note though, I did get my mattress delivered.  I had to get a new mattress because of my bones being so bad and everything.  I had a mattress for about ten years and even though it basically had no ‘wear and tear’ because I basically weigh barely anything, the mattress was no good for my bone structure because I am so ‘bony!’  I needed to get a new one because of the pressure the mattress was putting on my bones and especially with the hip/pelvis/femur fracture… I had no other choice because it was killing me because it was so painful to even lay on it because of the pressure it was exerting on those parts.  So the doctors said that with my current situation, with my illness, how hypersensitivity I am, and how bony I am… I had to get a new mattress ASAP because it was only worsening my situation, making the pain worse, and not allowing me to heal as I should.  Thankfully I sleep on a twin mattress because mattresses are so incredibly expensive.  I was also so shocked that the mattress I got wasn’t as expensive as I thought it would be because they could be astronomical. Thankfully the mattress company was also understanding and gave me a further “break” too.

 

Everyone was wondering how good this mattress was really going to be because it wasn’t even bought in a mattress store, or delivered by an official store or mattress company.  I bought it straight from the company and it was delivered by UPS. When dad and I unpacked it from the box, we accidentally ended up hitting poor Scooby in the head with the mattress. Poor Scooby.

 

So the two of us got to sleep on the mattress the other night for the first time… injured and all.  I had fallen off the bed and hurt my hip the night before and Scooby got hit by the mattress in the head.  When I laid on the mattress, it made such a difference!  I couldn’t believe it! It was so much better than my other mattress.  Usually I have to sleep propped up on pillows because of the pain that is put on my bones (especially my hip/pelvis/femur) but this mattress allowed me to sleep without the pillow.  It was soooo incredibly comfortable.  I loved it.

 

Mom also surprised me tonight with an anklet.  It means so much to me too.  It isn’t anything major, but it is something that I will treasure forever and ever because it is something that my dad gave to her and she now gave to me.  The anklet has 2 hearts on it with each of their names on it.  She knows how we have sold basically all of our jewelry in hopes of getting the necessary funds to pay for treatment, so she gave me this as a special present.  I love it.  Of course it needs major cleaning though because it is so old and hasn’t been worn in such a long time.  I didn’t even know she had it.  Yet, it has both their names on it and the date that my dad gave it to my mom, which was 9-11-71.  Since it is so old you can barely see the engraving so I don’t know if I should change the engraving to say “mom” and “dad” leave it as “Gail” and “Perry!”  Either way it is something I will cherish forever.

 

12471895_10101781024599410_7316827195945933586_oWell I have to leave in a few hours, so I guess I will stop writing now.  I am going to rest for a bit.  I really need all the help and prayers that I can get, so if you can please help me in any way possible, I would really appreciate it.  I really need to find a way to pay for the trip to Nebraska, as well as my current treatments just to keep me alive day-to-day.  The bills are just snowblowing out of proportion.  My birthday is quickly approaching, as it is February 7th.  I can’t believe it is Super Bowl Sunday.  I used to hate having my birthday on the weekend because no one would be able to celebrate it.  But now with it being Super Bowl Sunday… it is even worse.  I just hope that I make it to my birthday because at the rate that I am going… who knows because I need treatment that we just can’t afford and without this treatment I am not going to make it much longer.  So my life literally rests in the hands of the rest of the world because we can’t afford the treatment that we need to save my life.

 

On a better note though, Scooby’s birthday is today.  I can’t believe that he is now 10 months old.  Wow.  Time really flies.  He is such a great little pup.  I don’t know what I would have done without him.  He really has made such a huge difference in my life.  He is really my best friend!

 

Well… hope everything is well with you. Sorry that this letter was so long, but had so much to saws this time.  If you can possibly pass my link to my website around for help, I would really appreciate it because all donations are very much appreciated. After all, each dollar is one less than we have to come up with.  The link is www.gofundme.com/help4Fallon.  Thanks again for all your encouragement, support, and all your caring.

 

  • Fallon
Leave a comment »

December 20, 2015

12341599_10101749323244180_2149930459975884141_nHi!

 

Well the countdown is on!  Not including today… 5 more days until Christmas and only 10 more days until 2016.  I can’t believe how fast it is coming.  It is probably coming so fast because this weather has been totally unbelievable.  Forget about worrying if it is going to be a ‘white Christmas!’  We will be lucky if it is even going to be a ‘cold’ Christmas.  Hopefully the weather will stay like this and it won’t get colder and it won’t snow, but I have a feeling that we are going to get slammed once the New Year comes… just like we did last year. Once the snow started last year, we couldn’t come up for air.

 

Hopefully it won’t happen like that and hopefully it won’t happen in January because we are hopefully going to be heading to Nebraska Medical Center, which is known for HUGE snowfalls.  I really need to get to Nebraska as soon as possible and hopefully nothing will happen that will cause us to cancel the trip because I am extremely ill and getting worse.  I desperately need treatment if I am going to be able to see my birthday, which is not too far away (February 7th).

 

I am only hoping and praying that Santa brings me a great Christmas gift on Friday, which of course would be waking up to find me “cured” and able to have my life back.  My entire life was taken from me because of this illness and I have been left with basically nothing. I can no longer eat or drink anything.  I have no social life.  I have no friends, as everyone (both friends and family) have walked out on me.  Gosh you really learn who your true friends and family are when you are sick.  My calendar is all filled up with doctor appointments and procedures instead of with fun social events like it should be for a person my age.  My phone serves the purpose of just being a communication link to doctors instead of being a way to communicate socially with others for fun.  I can’t remember the last time my family and me went out to dinner or even had a vacation (going away to medical appointments isn’t quite considered a vacation because first of all mom isn’t able to go with us due to the fact that someone has to stay behind to watch the business and keep it going, as well as there isn’t enough money to have all of us to go. It is hard enough for just my dad and me to afford to go.  Second of all… it isn’t like going to the hospital and seeing doctors is any fun too!). In just plain English… my life just stinks.  I desperately lost everything… including all my dreams.  I wanted to make a difference in the world so badly.  I had a dream of becoming a doctor so that I could help others and make the hugest difference in the life of someone else and also in society. It is a shame how I worked my butt off all throughout school and got all straight A’s and had a 4.0 GPA in college, but I was then robbed of this dream. I only hope and wish that I get the treatment that I need to be ‘cured’ so that I can not only continue to be able to live my life and reclaim all that I have lost, but so that I can be able to be come that doctor I always dreamed I would be so that I can make a difference in the life of another person.  But of course I desperately need your help if I am going to have that happen.

 

I know deep down that for Santa to bring me this special gift that it would really be a “miracle!”  That is why I desperately need your help. Not only do I desperately need your help if I am going to be able to have my life back, but I desperately need your help just to get me the treatment that I need to continue living. It has gotten to the point that if something isn’t done quickly, I am not going to make it much longer.  That is why I need to get to Nebraska ASAP and I can’t have anything stand in its way. From the last time I wrote… things have gotten realy bad.

 

Since the last time I wrote, I have really taken a turn for the worst.  So much has happened also that it is literally unbelievable.  To begin with, I have developed severe swelling and pitted edema in my lower extremities. My legs literally are so swollen that when I went to the doctor, the doctor and nurses were like “oh my gosh! What on earth happened?  Your legs are soooooo swollen!”  I am literally gaining like 2 pounds a day on fluid.  After seeing the doctor, they believe that I am suffering from cellulitis, which is extremely dangerous and needs immediate attention and help.

 

Cellulitis is a common, potentially serious bacterial skin infection. Cellulitis appears as a swollen, red area of skin that feels hot and tender. It can spread rapidly to other parts of the body. In addition, the area of infection is painful and therefore, it is super painful for me because not only am I extremely hypersensitive so that the slightest touch or pain puts me in horrendous agony, but I am already in excruciating pain already!!  The bacteria that causes cellulitis can spread rapidly, entering lymph nodes and your bloodstream. Left untreated, the spreading infection can rapidly turn life-threatening.  The bacteria that causes cellulitis can spread rapidly, entering lymph nodes and your bloodstream.  It can even spread to the deep layer of tissue called the fascial lining and cause flesh-eating strep (necrotizing fasciitis), which of course is an extreme emergency. However, with my body being the way it is and especially since it doesn’t absorb… it is not going to be easy fighting this.

 

I am in such excruciating pain because of the cellulitis.  Not only are my legs feeling like lead weights because they are so heavy from being filled up with so much fluid.  I am so thirsty and yet the more that I drink, the worst that the pitted edema gets in my legs.  Due to the cellulitis and it causing the autonomic dysfunction to also worsen, it has made it literally impossible to go to the bathroom.  Therefore, I am retaining all of my fluids, which is causing the pitted edema to worsen as well as the pain.  In addition, the fluid is becoming so much that it is spilling into my lungs as well and making it difficult to breathe.  It is just horrible.

 

I spent the entire day in the hospital this past Wednesday. To think… I didn’t even know that I was going to have to spend the entire day in the hospital for IV antibiotics either. I was at the hospital to get my ketamine treatment, but when the doctors saw what was happening, they immediately put me on IV antibiotics.  So in a way I killed 2 birds with one stone. I not only had my ketamine treatment and procedures in my spine, which I was scheduled for, but I had the IV antibiotics too.  What a day it was!

 

I was then sent home with a very high dose of antibiotics.  The doctor also wanted to put me on a diuretic, but I was really hesitant about it.  I heard really bad things about them and therefore, the doctors said that they would hold off on them and see what happens. Yet, with me not being able to absorb, we don’t know if I will be able to be treated with oral antibiotics.  If the swelling doesn’t go away or worsens, I will have to go back to the hospital and get more IV antibiotics.  However, if I do have to go back to get more antibiotics through the IV, I doubt it will be a one-day thing like it was this last time.  I will probably have to stay there for at least a couple of days, which I really don’t want to do.  You would think that with all that I have been through that I would be used to the hospital by now.  But instead it is the reverse.  I can’t stand them.  The more that I am hospitalized, the worst it is getting.  I am literally freaking out when I have to be hospitalized.  I don’t mind going as long as I know I am coming home, but if I have to stay… I freak!

 

I am totally afraid that I am going to have to go back because the pitted edema is still very much there and whereas I was able to urinate on Wednesday and Thursday, it isn’t happening anymore. I guess the oral antibiotics aren’t helping me as much as the IV antibiotics did. I am wondering now if they are helping even at all. I just really hope that they are because I am so scared that something is going to happen like the infection will worsen and could cause me to lose my leg or something, or that I will have to be hospitalized.

 

They aren’t really quite sure what caused the cellulitis.  But they are thinking that it has to do with my failed GI system.  They said that my colon has to desperately come out because of all the toxins it is leaking out and also because it is causing blockages.  That is why I need to get to Nebraska as soon as possible.  I need to get this taken care of because I am in a life-threatening crisis that is a real emergency right now.

 

I also went to have a CT scan on Thursday to further determine what was happening.  Due to my illness, they put me to sleep when I underwent the scan because they needed me to hold perfectly still and I wouldn’t be able to do so because of the autonomic dysfunction and the pain.  In addition, they also had to give me contrast and therefore, they thought that it would help the autonomic dysfunction not going out-of-control and me feeling it when they administered it because the contrast did cause a warm sensation throughout the body, which could easily stir up the autonomic dysfunction and make me uncomfortable.

 

The results of the CT scan were not good and therefore I now have to go for abdominal MRI to further investigate what is happening.  At least they will be putting me to sleep for this as well.  It is such an emergency for this to happen that the doctor is trying to get the authorization to undergo the scan asap. Not only did they find degenerative bone disease and multilevel degenerative disc disease of the lumbar spine with foraminal narrowing narrowing of the spine, they were very concerned with the hyper-enhancement of the small bowel.  They think that I have enteritis, as well as colon mechanical-fecal obstruction that is impeding lymphatic flow.  There is also so much other stuff going on that can cause further problems and infection.

 

The doctors are saying how I need to get the culprit out as soon as possible because it is causing so many problems.  I need to get the colon removed and a new GI system. So I desperately need your help so that I can get the lifesaving treatment that I need. I am scheduled to leave for Nebraska in January and I will need all the help I can get in trying to raise money because it is going to cost a lot.  This is going to be the first of many trips and we will also have to stay a long time there as well because the treatment that I need (even without the transplant) is long.

 

12377641_10101756536029700_279441698030656768_oI can’t wait to get to Nebraska.  Dad and I are going like usual. We of course are also going to take the Scoobster!  I am really happy that we are going because I really feel comfortable there. This hospital is like no other that we have gone too.  Even when I speak to them on the phone, I don’t just feel like another “patient!” They treat me and everyone else like a family member.  Nebraska Medicine transplantation specialists were among the first to recognize patients suffering from the complications of intestinal failure and began performing liver and intestinal transplants. In 1993, we became one of the first medical centers to perform isolated intestinal transplants.  Today, Nebraska Medicine is one of a few facilities with expertise in intestinal failure – and one of the busiest programs in the United States. Innovation, solid outcomes and high patient survival rates have distinguished our center as a leader in intestinal failure.  I have heard nothing but good things about this hospital and my doctors.

 

The intestinal transplant program has a worldwide reputation. They performed more intestinal transplants than any other hospital in the world.  People go from having no hope to realizing that, very likely, they will be able to live and eat normally. So I am really hoping that this is where I will be able to get my miracle.

 

So… this is it.  I just wanted to share all that has been happening.  This will be Scooby’s first Christmas and therefore, I want to make it as special as possible for him.  I have a Christmas sweater for him to wear, but who knows with the weather now if he will be able to wear it because it is soooo warm.  Hopefully he will because it is sooooo cute.  Scooby is my little baby.  I am so fortunate to have him.  He goes with me everywhere and helps me so much get through each day.  Even the doctors say that if I didn’t have him that I probably wouldn’t be alive today. They think that the reason I am holding on and still as strong as I am is because of Scooby.  We do everything together from going to doctors to going to the hospitals to going anywhere and everywhere I have to go.  He even has his own car seat and sunglasses.  We are inseparable.

 

Everyone that sees him falls in love with him because he is like a real life “teddy bear!”  No one can believe how well-behaved he is especially when I tell them that he is only 9-months old. He loves getting dressed in the morning and in fact won’t even go outside to the bathroom until he is dressed.  Scooby is my ‘service dog’ and therefore he can’t be touched really by others because he is technically working.  So at night when we take off his clothes, my dad always teases him by not only telling him that he is ‘naked,’ but he tells him that he can ‘act like a dog again because he isn’t working!’ Scooby is definitely one of a kind.

 

12376278_10101755631916550_3293808737539756810_nScooby can always be spotted in his stroller and since he is so loveable… everyone falls in love with him and wants to pet him.  We had to get labels and tags to put all over him that says “Service Dog” and “Do Not Pet” because like I said before he isn’t supposed to be technically pet when he is working.  He even pulls back when someone goes to pet him and to be fair to him, we got him some tags so people won’t have to bother him anymore.

 

Please help get me the treatment that I need.  I desperately need all the help that I can get in trying to raise money so that I can get the help to get to Nebraska so I can get the treatment that I desperately need, as well as to continue my day-to-day treatment at home.  I am literally watching myself die and deteriorate so fast.

 

Please spread this link so I can try to get as much donations as possible because every dollar is one less that we have to come up with and is extremely helpful. www.gofundme.com/help4Fallon.  Thank you so much for all your support and encouragement. Have a very happy holiday and a very happy and healthy New Year.

 

Love,
Fallon

Leave a comment »

December 14, 2015

12374728_10101750981920180_6113639244543209492_oHi All-

 

Just wanted to write and say HI and catch you up on all that is happening.  Chanukah is almost over and Christmas is about 1 ½ weeks away.  That means that there is only 2 ½ weeks left of 2015.  I only wish that means there is only that much longer left of being left in this “hell” because I am hoping that I will get a “miracle” this holiday season and I will then be able to start 2016 happy and healthy.  I just can’t live like this anymore.  The pain is just too intense and unbearable.  My entire body is literally shutting down and the strength in me fighting is also weakening. I am still my hardest to fight, but I am no longer the “Energizer bunny” that can keep going on and on.  My batteries are running out and running out quickly.

 

I really need help from others before my batteries run out completely and I lose this battle.  I desperately need treatments and medications, but unfortunately without the help of others… it is literally getting impossible to get anything.  This disease stinks because it is so expensive.  I take so many medications that either have very expensive copayments or are not even covered at all, the doctors are not all covered on my insurance plan (and the ones that are covered still have copayments that quickly add up to astronomical amounts because I have to see them so frequently and the amount is not little either each time we see them), have traveling expenses because I have to travel across the country to seek the help of specialists because I am so sick and my illness is so rare that I need such specialized care, and even the procedures are expensive and costly.

 

I really need help and help as soon as possible.  Besides having trouble affording treatment in New York and my medications and everything, we even are going to have to cancel my trip to Nebraska Medical Center in January and postpone it to the end of January.  We were supposed to leave for Nebraska the end of December/beginning of January because I needed to seek the help of the GI specialists there because my colon needs to desperately come out, but due to insufficient funds, we had to reschedule it to the end of January.  I am only hoping and praying that we will have the funds by then because I won’t be able to make it longer than that.  Even the doctors are worried that I won’t even make it that long.  Plus… my birthday is February 7th, and I would really love to be here to see it.

 

Since it is the holiday season and it is the season for “giving”, I am only hoping that perhaps others might help me be able to receive the best holiday gift of all… which is help to get the lifesaving medical treatment/medications/appts that I need to survive and to continue my daily battle.  As this is the season for “giving,” please consider my treatment goal as an option for giving back and making a difference a person’s life during the holiday season.  I can’t tell you what it would mean to me if you would be able to help me out… whether it is by making a simple donation (as there is no donation that is ever too small), by saying a prayer, or even by spreading my “gofundme” link (www.gofundme.com/help4Fallon).

 

So many things have been happening that I am literally freaking out.  My white count has been very elevated and I have had severe pains in my stomach and bones.  We know I have an infection stemming somewhere, but we just don’t know where as of yet.  The doctors are thinking that it can be possibly a bone infection, osteomyelitis, but I need to go for a CT scan to find definitively if it is and unfortunately the insurance company has been giving us difficulty in authorizing it.  We of course can’t afford it without them paying for it and as a result I can’t go for it until then.  So I am basically in limbo until then.  It just really stinks though because if it is a bone infection, which they suspect, it needs to be taken care of asap because bone infections are extremely life threatening and can disastrous if not treated immediately.

 

We also think that something is happening with my intestines. We already know how my GI system and intestines are failing me.  We know that nothing moves through my intestines and that is why every week I have to go to the hospital and have my intestines “cleaned out” in the OR.  I keep having toxins spilling out of my intestines because of all the stuff just sitting in my intestines and it is literally shutting down my other organs.  The toxins are poisoning me and can easily cause me to go into sepsis.  In addition, the doctors are also afraid that my intestines are going to rupture because nothing passes through and that is just another reason why I need to get to Nebraska asap.  I need to get this GI system fixed and the colon removed before something major happens like I go into sepsis or a huge rupture happens.

 

With the white count being so high and there being blood in the mucous and stool, we are already thinking that there is a perforation in the intestines.  However, we are thinking that it I getting worse now and my bloods are really falling.

 

I have a doctor appointment later today to find out about my bloods, but we really think that my bloods are falling.  One of the reasons we are thinking this is because my whole body keeps going into cramps and spasms.  In fact, it goes into such bad cramps and spasms at times (especially last night) that I can’t even walk.  I woke up this morning with them so bad that I almost ended up in the hospital.  These spasms and cramps are like the ones you get in your legs when you are sleeping and you see your body part twisting in one direction when it feels like it is going in another and you can’t untwist it.  You know?  I have been having problems with my hands and fingers having spasms for the past week or so, but now it is in my legs and feet.  Something just isn’t right.

 

In addition, my body is retaining all fluids.  I am filling up with fluids like a water balloon.  I really desperately need to be pop.  Both ankles and feet are so swollen and no matter what I do… the swelling won’t go down.  Even if I raise them… the swelling won’t disappear. I’m scared because I am basically going for through everything that my grandma did before she died. It’s like I am reliving it.

 

My hip is bothering me too. I can’t walk. I went to the orthopedist and he said awhile ago that the screws were loose and coming out but he won’t go back in and tighten them. He won’t replace the rod and the only way he will take it out Is by giving me a new hip (which most people get) … But I’m not a candidate and he won’t do it. So I’m thinking of seeing another orthopedist and seeing what he thinks.

 

In addition, I have also been having vision problems.  I went to the eye doctor and sure enough my vision is being affected by this illness.  I had to get all new glasses now too, which of course is a disaster too because my lenses aren’t cheap.  Unfortunately, due to my illness, I have to wear prisms and have a very complicated prescription that makes my glasses extremely expensive.  Just the lenses alone cost nearly $1000.  What makes it worse too is that you can’t just have one pair either because you have to have a spare in case something happens to one.  After all, you can’t be left without glasses because that is the only way you can see.  You know?  So… I just don’t know what to do because I desperately need glasses so I can see, but as I said they are just incredibly expensive and I need 3 pairs (2 glasses and sunglasses).  I can’t go into the sun without sunglasses because I am so hypersensitive and the sun will literally kill me.  I just can’t catch a break.

 

So that takes care of everything.  Scooby has been keeping me busy.  It is his first holiday season so I am trying to make it as special as I can for him.  I can’t remember the last time we celebrated a holiday in my house because of everything that is happening, but I want to make this holiday season special for Scooby.  After all, Scooby is like my little baby.  There is nothing that I wouldn’t do for him!!  He is the coolest dog. He loves wearing clothes and he even has his own sunglasses.  Like the doctors all say… if I didn’t have him, I probably wouldn’t be here today.  They all think that the reason I am holding on and keeping going is because of him.  They think that the only reason I made it through the operation for my hip was because of him.  Perhaps they are right!

 

12356860_10101750980537950_1220535802243015754_oScooby is just one amazing dog.  I just actually found out that he has one of the longest lifespans, so I am really excited because that means he will be around for a very long time.  He is being trained to be a “Service Dog” and he is doing amazing.  When we go out to appointments and other places, he acts so good that everyone can’t believe how well he behaves. He really is terrific.

 

Well… I guess that is about it.   I just wanted to update on all that is happening.  I want to wish you a very happy holiday season again and hope that you get all that you want for the holidays. I am only keeping my hopes that I will receive my miracle this year. Keep those fingers crossed and please pray for me.  If you can help me out in any way possible… whether by donating, praying, or spreading my link (www.gofundme.com/Help4Fallon), I would really appreciate it.  Thanks again for all your support and encouragement.

 

Love always,

Fallon

 

 

Leave a comment »

December 6, 2015

12339316_10101743895072280_6246288632627662300_oHey-

 

Well… I am officially back from Ohio and I wanted to write to let you know all that has happened, as well as to wish you a very Happy and Healthy Holiday Season.  I can’t believe the holiday season is upon us already and 2016 is less than four weeks away. I only pray and hope that 2016 will be a great and amazing year for both you and me.  I only hope that 2016 is filled with happiness, good health, no pain, and of course prosperity.  I have been suffering so much that I really hope that 2016 will really be the year that starts a brand new life for me.

 

I can’t remember the last time we celebrated the holidays.  Due to my illness… life in my family has taken a drastic change and life is just not the same. We don’t do things like we once did like go on vacation or celebrate the holidays. In fact, I can’t even remember the last time we even went out to a restaurant for dinner.  All the happiness that was once in my family has been taken by this family as this illness has become nothing but a heavy burden on all of us.  Not only has it been directly affecting me because I am the one afflicted with the illness and dying, but my entire family has been struggling with it as well along with me for the duration that I have had this horrific illness.  This illness has really taken a huge toll on my family both financially and emotionally

 

Due to how expensive the cost of this illness is, it has put so much pressure on my family to try to get the funds in order to afford the treatment to save my life.  However, I have been suffering so much and for so long that there comes a time when the money just runs out because money can’t last forever. After all, it isn’t like we have a money tree in our backyard.  So we have given up everything that we could… vacations, going out to dinner, celebrating holidays, etc. just so that we can try to put all the money towards getting the treatments that I desperately need.  However, even by doing this… it is literally impossible to get the treatment because it isn’t nearly enough.  We desperately need the help of others in order for me to get this treatment because we can’t afford it ourselves.

 

So I am only hoping that this holiday season that others will find it in their heart to help me receive the medical treatment that I desperately need to live.  I know I am asking a lot and I don’t mean to sound like a crier or beggar, but getting donations so that I can get the treatment and medical help that I need would be the best gift that I could ever get.  I only pray that perhaps my miracle can come this holiday season and that I will finally be able to get well because if I don’t, I fear that I won’t see the next holiday season.  I am just deteriorating too fast at this point and things have gotten soooooo bad that it is unbelievable how bad it can be and yet I am still living and pushing on.

 

I can’t believe that I am still pushing on despite how bad things have gotten and how badly I am doing.  But it is because of my family and great people like you that I am still going.  Even the doctors are shocked that I am still alive.  Never before did they see someone as sick as me, with a BMI as low as me, and a weight of being only 60 somewhat pounds still alive.  Yet… I am still pushing onward hoping and praying that my miracle will soon come about and I will be able to get back the life that I was robbed of.  I have so many dreams and aspirations and so many things that I have not been able to do.  My time on earth is not done yet. So I keep hoping, going and pushing onward

 

So If you can please help me achieve my miracle this holiday season by helping me get the medical treatment that I need to live… I would appreciate immensely. Any donation is greatly appreciated and no donation is ever too small. Please donate at www.gofundme.com/help4Fallon.  If you have any questions or have any ideas on how to fundraise or receive more donations, feel free to also contact me at Femirsky@gmail.com.  Please spread these links to as many people as possible because I am desperate.

 

I also need donations so that we can afford to go to Nebraska.  We just got back from Ohio a few days ago, as I was at the Cleveland Clinic, and now it appears that we have to go to Nebraska.  We barely made it to Cleveland because we didn’t have the funds.  There is no way we are going to make it to Nebraska without help and I definitely need to get there because I will die if I don’t.  We are scheduled to leave January 10th, so that gives me about a month to get the funds.

 

12309910_10101744551272250_3757158470662705226_oUnfortunately, when we went to Cleveland, we were told that I got too sick for them to do the procedure that they originally wanted to do, which was to first remove the colon because it is completely useless and diseased (so I can easily rupture it and go into sepsis) and causing so many other problems in my body like putting pressure on my other organs and causing them to fail such as with my heart.  After that was supposed to happen, I was supposed to have a multivisceral organ transplant, which consisted of getting a new small and large intestine, stomach, pancreas, and liver because my entire GI system is gone.  This was all supposed to start taking place awhile ago when I was much stronger, as I have deteriorated a lot over the course of time and a lot has taken place. We didn’t have the funds right then to have the surgery right away and since no one does nothing for free, we of course couldn’t have the surgery at that time.  Plus, who would think that in the course of waiting to raise the money needed for the surgeries that I I would need to have major surgery to repair the fracture to my hip, pelvis and femur, which took a huge toll on me.  So with everything happening… I just deteriorated so much that the original plans couldn’t happen anymore.  I now need to now go to a hospital that is even more specialized supposedly and better able to care for me, which is the hospital in Nebraska.

 

Dad, Scooby, and I went to Ohio last week with great hopes that something was going to be able to be done and I was going to get better.  What an adventure it was!!  This was Scooby’s first plane ride and not only was I nervous for going to the hospital for myself, but I was nervous about how Scooby was going to take the entire trip… especially the plane.  But boy… Scooby really surprised me big time.  He took the plane like a real ‘trooper!’  Everywhere we went… whether it was on the plane, to a restaurant, in the hotel, in the hospital, etc. we kept getting compliments on how well-behaved and amazing Scooby was.  In fact, I even had him wear a diaper on the plane and in the hotel just in case because you can never be too careful.  After all… when you are on a plane you can’t tell the pilot to ‘land the plane, my dog has to go to the bathroom!’ But to our surprise he never had one accident for the entire trip, and he would not go to the bathroom from like 8 AM until 4 PM.  He was just simply amazing.

 

12273623_10101742630311870_1055272903851656041_oI made sure that Scooby was well packed with anything and everything that he could possibly need.  Whereas dad and I shared a suitcase, Scooby had his very own.  After all, he had to bring all his clothes too.  In fact, he even was helping me pack his suitcase when I was packing it.  It was so funny. Then when I was all done, he even tried to pull it along.  I had to keep telling him “not now Scooby… we aren’t leaving!”

 

What a trip we had. We had a stopover in Chicago on the way to Cleveland and they ended up leaving Scooby’s stroller there because we gate checked it.  I was literally freaking out when we arrived in Cleveland and there was no stroller for Scooby.  After all, Scooby loves that stroller and he basically lives in it.  He doesn’t go basically anywhere without it because he sleeps in it and feels more confident in it and everything else.  Plus… I needed that stroller to because I use it as a walker too.  I can’t really walk myself and using the stroller as the walker is much easier because a traditional walker is too tiring because it doesn’t really move because it has no wheels or anything, and a rollator is too big and heavy to use especially when I am so small.  The rollator is nice when I am home and don’t need to transport it, but when I have to go someplace and bring it…it is so big and heavy.   So basically I was freaking out when there was no stroller to be found.

 

Yet when I went into baggage to file a claim, Southwest told us that it was left in Chicago and will be on the next flight here and they would deliver it to the hotel.  I was so relieved because we both needed it.  However, to make a long story short, the stroller never showed up by 1 AM and after calling them over and over again, they finally brought the stroller at 2:30 in the morning.  I never saw Scooby so happy! He ran to it when he saw it.  However the stroller did break when they had it so I am going to see if I can file a claim and if they can do something about reimbursing me for it.  Can’t hurt to try.

 

12307308_10101744242840350_7590185696190261707_oScooby had such an amazing time though. We all did.  Even though we were there because of the hospital, we still tried to make it as ‘fun’ as possible. In fact,  Scooby and dad would have races up and down the hallways.  It was so funny to watch.

 

In terms of what happened though at the doctor, we learned that they did have this new machine out there would act like a stimulator and be placed in my sacrum.  It would function in a way so that I don’t leak any mucous and help with the peristalsis in my colon and rectum.  I was really excited about this idea because it would stop me from having accidents and wearing a diaper at times. However, upon examining me afterwards… the doctor saw that there was no place whatsoever to put the machine.  I had no body fat whatsoever to hide it or anything.  SO there went that idea.  The one thing that I was absolutely happy for and wanted.  I couldn’t get.  I asked about plastic surgery, but they said it was impossible

 

Then the doctor moved on to the next area of business, which was to remove the entire colon.  Originally the plan was to remove the entire colon and then hook up the small intestine to the rectum. They would then try to get me stronger because they were hoping that the small intestine wasn’t as bad as they were thinking and it would possibly function better without the large intestine. They wanted to do this so that I would hopefully be able to become stronger so that when I underwent the multivisceral transplant that I would be able to survive it because it is extremely dangerous and risky.  Only 6 hospitals in the country do it and it is supposed to be the most dangerous transplant you can have.

 

However, as I stated previously, too much time had passed between trying to find the money for the surgery and then breaking my hip, femur and pelvis and recovering from that particular surgery and as a result, I got too sick and weak for them to undergo the removal of the colon.  This surgeon just didn’t feel comfortable enough doing it and rather would have given me tubes and bags instead, which is something I didn’t want at all.

 

This surgeon was really scared that something was going to happen if I had it done in Cleveland because I wasn’t strong enough to undergo a huge operation to remove the colon.  Therefore, she proposed giving me a bag like an ileostomy and then putting tubes in me as well along with vents.  The tubes would be to put stuff into me and pass things along and the bags of course would be used to take things out.  They would also put vents in me because if I should get bloated or anything, I would then be able to open the vent up and release the gas. Basically I would be a walking machine…. Especially between all that and then the rods in my leg.  I am like no longer human anymore and I am becoming more and more like a machine.

 

The tubes, vents, and bags would be placed in me in a way to kind of mimic a digestive system in me, as it would make it so it would bypass my real digestive system.  The goal would to have me get stronger through this method and then once that occurred, then they would first proceed with how they originally intended, which was to first remove the colon and then they would get ne even stronger, and then they would do the transplant.  So basically this would take a while and it would be a never-ending procedure. There is also no guarantee that I would ever be strong enough for them to take out the colon.  In addition, I can easily die while I am getting supposedly stronger from this because in the meantime that they are feeding me and building me up through my ‘alternate digestive system,’ I am still going to have my colon, which is still going to continue to cause problems and will still eventually kill me.  However, they are hoping that with it not being so much in use, that it won’t happen so quickly and hopefully nothing will occur with the colon such as it rupturing or me going into sepsis even though the colon is ‘dead!’

 

I really don’t want to have bags and tubes coming out of me everywhere.  That is not a way to live.  I am only 33 years old and I have suffered enough as it is… to me that is only further suffering.  Not only would I have bags and tubes coming out of me, but I would also be constantly hungry.  Although they would be technically feeding me through the tubes, I would still be hungry because it wouldn’t register with my brain since it isn’t passing though my mouth and my stomach and other organs.  So what type of life is that?

 

So the doctor is sending us to Nebraska where there is a hospital that is supposed to be like the #1 hospital in intestinal rehab and transplants.  In 1990, Nebraska Medicine transplantation specialists were among the first to recognize patients suffering from the complications of intestinal failure and began performing liver and intestinal transplants. In 1993, they became one of the first medical centers to perform isolated intestinal transplants.  Nebraska Medicine is one of a few facilities with expertise in intestinal failure and a leader in intestinal failure, as well as it is one of the busiest programs in the United States. The survival rates are very high there.  In fact, they have been calling me for years and trying to get me to come to see them.  So we leave January 10th to see what they can do for me.

 

12303926_10101743505003980_968991317369711156_o-1So that appears to be all that is happening.  I desperately need something to be done because I am rapidly deteriorating and I definitely won’t see the holidays next year if I don’t get treatment and get better now.  I am getting the worse debilitating pains in my life that all I can do is crawl I in a ball and cry.  Plus we know something is wrong and that I have an infection somewhere because my white count is so incredibly high. We are really racing against the clock.

 

So perhaps I will get the best gift this year.  Perhaps I will get my miracle. Keep those fingers crossed and please pray for me.  If you can please spread my link (www.gofundme.com/Help4Fallon), I would really appreciate it.  Thanks again for all your support and encouragement.

 

Love always,

Fallon

 

 

Leave a comment »