FALLON MIRSKY

Please help SAVE MY LIFE!

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

 

 

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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
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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

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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

 

 

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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

 

 

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November 25, 2015

12240930_10101737120548480_1172554018342192005_oHi-

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Thanks again for everything.

 

  • Fallon
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November 18, 2015

11220930_10101732141441650_3052077053998190576_nHi-

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Thanks again,

Fallon

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November 11, 2015

12194945_10101727443147070_1811867654067404735_oHI-

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,

Fallon

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October 31, 2015

IMG_0950Hi-

Well… I figured that I haven’t written in awhile and it was time for me to update everyone on what has been happening since so much has been occurring. I am also in desperate need of help and I thought that by sharing my story and all that I am going through currently… perhaps I might be able to bring in some much needed donations or prayers or even ideas to raise money because more people will know about me and my situation and perhaps be willing to help. I can’t tell you enough how much I appreciate all the help that everyone has already provided me so far. I definitely wouldn’t have made it this long if it wasn’t for your kind and generous hearts.

However, I am really hanging on by a thread and desperately need life-saving treatment soon. Between my illness (autonomic dysfunction, reflex sympathetic dysfunction, dysautonomia, and severe gastroparesis) and then the accident that I had (broke my femur, pelvis, and hip and had to have rods, pins, and screws placed all throughout me)… I am really not doing well and things are really snowballing out of proportion. I have really been trying to make improvements and trying my hardest, but I have been making an upward climb up a hill that I just keep sliding back down. Even though I have been working my hardest to get better, I need treatment that I can’t afford and desperately need. So I am really hoping that through you and others that I will be able to find a way to get it. If you want to make a donation, please feel free to do so at www.Gofundme.com/help4Fallon. Remember that no amount is too small and ALL amounts all appreciated.

IMG_1358I can’t believe that tomorrow will mark 3 months since I had that huge fall that drastically changed my life. Gosh… to think that I could have died or been bedridden for the rest of my life… it gives me the chills. I still remember that day as clear as ever. All the doctors were telling my head surgeon not to operate on me because they said that I would ‘die on the table.’ They even told him that if by chance I made it through the operation, I would never recover. But after waiting until the last possible moment because we only had a 48-hour time frame that we could do the surgery, my surgeon decided not to listen and give me a chance of life. I am so glad that he did because I would never have wanted to be bedridden for the rest of my life and that would have been the end result. So… now I became the ‘bionic woman’ because I had to have rods, pins, and screws put throughout me.

Everyone (including the doctor) is so impressed with how I made it through the surgery and how I am recovering. Never count me out is what I tell doctors. I should have been dead a long time ago… yet I am like the energizer battery because I keep going and going and going. Even the doctors are amazed of how I am still alive. Who would think that someone as sick as I am, as weak as I am, as emaciated as I am because I only weigh in the 60s, who’s body is basically on autopilot 24 hours a day, etc. would be able to live so long? But I still have so much in life that I want to do and still have to do before my time is up. I was robbed of so much because of this illness and I still haven’t done all that I have wanted to or need to do. I still have to become the doctor that I dreamed to be since I was a little girl and make a huge difference in the world.

So in the past 3 months, I have been trying harder than ever to recover from this surgery even though my illness is complicating it so much and making the recovery process so much harder. However, with having this fall, it has not just made my life physically harder, but it has made my family’s financial life harder as well. We couldn’t afford my treatment before when I just had my illness to worry about. Yet, now that I have this fall to recover from as well, it has made our financial problems so much worse because not only do I need treatments that will directly help the accident, but it has made my illness so much worse too. It has really made it urgent to get treatment because each day the illness is getting worse and worse.

Gosh… when you have your health, you really have everything. Since the accident, I have had no choice but to have an aide by my side every day because I constantly need help. I never thought that I was going to need so much help and have to need an aide to help me. But what stinks is that even though we pay an astronomical amount for insurance, we were not covered for the aide to be here. So we have been having to pay for her all out-of-pocket, which was extremely expensive and cost nearly a grand a week.

We weren’t covered until now. I can’t believe it took this long to get all the paperwork approved so that we can get somewhat covered and even with that… we still have to pay. But at least now we won’t have to pay the entire amount like before. But this week a new aide is starting too which should be about my age. I haven’t met her as of yet, but the social worker told me that she is about my age and she is going to push me and help me out in any way that I need. She told me also that she is very nice and everything. So we will find out soon.

In addition, I have been busy going to Physical Therapy, Acupuncture, and of course getting my colon cleaned out every week along with my ketamine treatments every week. Between all this stuff, I am basically busy every single day of the week. I have lost all my friends ever since I got sick because you really find out who your true friends are when you get ill and as a result, I basically have no social life. Therefore, my phone is just a way for doctors to get in touch with me. Instead of my calendar being filled with social events that are fun and such… they are filled with doctor appts and treatments. One of these days, things will be different and I will be able to regain the life that I was once robbed of.

I love going to Physical Therapy though. It is really fun for me because I feel kinda ‘normal’ by going. I pretend it is like going to the ‘gym!’ So when other people say that they are going to the gym to workout, this is my gym workout. I am trying my best to get strong and I have really been improving.

Physical therapy is hard work. Yet it is something that I am working very hard at. I go on the bike and try to work on that even though I can’t always pedal around 360 degrees because I am having a very difficult time bending my knee still. In fact today I even bench-pressed 30 pounds for the very first time. Of course my legs were trembling because they were so weak and I had an extremely hard time pushing off the ‘bench’ and the therapist was kinda holding me and pulling and pushing the chair with me so that I wasn’t doing it all myself, but it still felt good knowing that I was doing it (in a way).

This surgery was the worst surgery that I ever had and this recovery process has been so hard. However, once my brain finally registered that I had one leg instead of a rod and a leg… it really made a huge difference and was much easier. It was so weird because it always felt like I had two things going on in my leg. It always felt like I had a rod and then a bone in my leg. However, one day it was the weirdest thing because I just woke up and that feeling was gone. It was like my leg was back and I didn’t have two things in my leg anymore. It honestly felt like there was just my leg bone there.

I have been really petrified though of my leg and haven’t really looked at it. I am so afraid of something happening or having the rod come through or something. I am literally freaking over everything because I get a lot of pitted edema and swelling especially around the knee. I am so worried at times that the screws and nails are coming out when I turn the wrong way because I know that I am very fragile and the doctor even told us that when he did the surgery and were putting the screws into my bones that “it was like putting screws in butter.” It is so weird to know that they drilled right through my bone and put a steel rod through it straight down to my ankle.

However, I finally looked the other day in the mirror for the first time at my leg and it made me so nauseous. I am extremely emaciated and thin, so you can basically see everything especially since I have no muscle in the left leg. When I looked at it, it looked just like a steel rod. So it really made me sick. I also noticed that my left hip was significantly lower than my right. My left ilium and iliac crest is significantly lower, which is the side that I had the surgery on. Even though I broke my femur, pelvis, and hip… I don’t feel like one leg is shorter than the other when I walk. Yet when I look in the mirror, you can see that one side is significantly lower than the other. My back has been hurting me on the left side as well and after speaking to the doctors, they said that the this side being lower and the left side of the back hurting is all due to the left side being extremely weak and having no muscle tone. He said that when I get stronger it should go back up.

Wanna hear something? There is this tape that the physical therapists put on me called Kinesiology Tape or KT Tape. I call this my miracle tape because it helps so much with walking and pain. The therapist literally puts so much tape on me because I have so much pain and weakness everywhere that he always says how I use up all his tape and how I am ‘all taped up!’

I might need to go for surgery though to break up the scar tissue.   I am getting adhesions because of scar tissue buildup. Even though I have been working so hard to get better, I am having a lot of adhesions. In addition, the scar tissue that I am breaking up is also attaching itself to the tendons and ripping them as well, so it is also causing problems with that as well. So it might end up having to have surgery on them as well. As it is… I keep getting spasms from the tendons being ripped and the scar tissue breaking up. Every time something touches my leg or the therapist works on it… I get the worst shrill of pain that goes right through me. It is the worst pain you can imagine. I really hope though that I don’t have to go for another surgery.

IMG_1566Scooby comes with me all the time to PT. In fact, everyone there knows him, which includes both patients and the staff. They call him the ‘mascot!’ It is so funny because he loves going. He sits on the bed with me while I do my exercise and then follows me all around the room as I do my exercises on each machine. The staff has so much fun trying to feed him treats and play with him.

However, Scooby has been having some fear issues ever since we came out of the hospital. He spent the entire time in the hospital with me, which was about 2 weeks. During this time there was this guy that used to come right outside my room at about 1 AM to change the towels/sheets because the cart was right outside my room and whenever he came… he would constantly try to make noise to get Scooby to bark. Scooby is only now 7 months old so he was only 4 months at that time and he was frightened constantly by this man in a mask constantly trying to wake him up by banging on the cart at 1AM and waking him up from his sleep. So now Scooby is so fearful of people especially of men. We are trying to get him over his fear issues, but it isn’t so easy.

IMG_1622But Scooby surely loves me. He will literally follow me all over the place there. When I am on the table, he will do whatever he can to try to get up on the table with me. Even when I go for acupuncture… he will cuddle up right next to me and sleep with me while I have it done. The therapist even took a picture of us sleeping together. He really is some dog.

Scooby has been one huge help for me. Not only has he helped me emotionally, but also he has helped me physically as well. He has been pushing me so much to get better because I have to take care of him and he has to do things as well like go to school and everything. After all, Scooby is being trained as a ‘service dog’ and therefore, he has to pass his test. So even when I am in bed and unable to move because of the pain… we still work on all the stuff that he has to practice in order to pass the test. He has also gotten me to walk too because since he loves going in his stroller, I use his stroller as a walker. It is so much easier using the stroller to walk with rather than the traditional walker. They did end up giving me a different walker called a rollator, which has wheels and brakes, but it is so huge and heavy that I much rather use the stroller because it is easier.

My dad loves the new walker though especially when I go to the hospital for my stomach and when I go or the ketamine treatment. The reason he likes it so much is because there is a seat on this walker and therefore he just plops me on it and pushes me out. This way he doesn’t have to worry about me falling, walking slowly, or even carrying me and carrying the equipment too.

Speaking about hospitals and surgeries… it looks like we are leaving for Ohio right after Thanksgiving. In fact, we are scheduled to see the doctor December 1st. Scooby is coming with us and it will be his first plane trip. This is the trip that was supposed to happen in August, but we had to cancel it because I ended up falling and breaking my hip, femur, and pelvis. I am seeing the surgeon because they ideally want to do the multivisceral transplant because that is really what I need (getting a new small and large intestine, stomach, pancreas, and liver), but since this transplant is the most dangerous of all transplants and I am not in the strongest condition, they are going to probably just remove my colon and then try to hold off a bit in order to try to get me stronger for the transplant. We know the colon has to come out ASAP because it is completely dead and nothing moves through at all. In fact, that is why I go every week to the hospital. I have to get my colon cleaned out in the operating room because nothing really passes through and all the toxins literally are going into my bloodstream from everything just sitting there and rotting and going to my organs and shutting them down. Plus they are worried that the colon is going to rupture and I am going to go into sepsis. Then we will really have a huge problem on our hands.

So this will be some trip. Of course even though we have all intentions of going and are planning on going and have everything scheduled, it all depends on our finances as to whether we are going to be able to go or not. That is why I am hoping that I will receive donations and help because not only do I need it so I can directly receive medical treatment in New York and do physical therapy/acupuncture (I go 4 times per week and costs over $200) as well as get medications, I also need the funds so that we will be able to get to Cleveland. This is to save my life because I am really running out of time. I desperately need to get there and I also need all this other medical treatment as well.

I have been getting extremely sick lately with debilitating stomach pains. It is almost like giving birth in the sense that it feels like contractions because they start out weak and get stronger and stronger until they are unbearable… and then they will weaken again. It can last like for 2 hours and they are so debilitating. We have no idea what is causing them. I originally thought it was related to something I ate, but it wasn’t that. Then I thought it was because I was hungry, but it wasn’t that either. We just couldn’t figure out what it was. When I asked my GI doc, all he could say was, “That is why you need to get to Cleveland already and have that surgery!!”

We will bring Scooby’s stroller and he will have his own suitcase because he has clothes to wear as well too and such. We thought about putting him also in a carrier so that he could go under the seat and not be bothered, but we can’t find a carrier that will fit him comfortably because he is so long. Plus, he probably wouldn’t want to sit in the carrier under the seat anyway. So he will probably end up sitting in the seat with me. I spoke to the airline and because of the fact that he is a ‘service dog’ and everything … he can sit in the seat with me and not have to worry about having a carrier or anything.   So not only does my dad now have to worry about my stuff and me, but he also has to worry about Scooby too.

Wanna hear something hilarious? Scooby loves playing with his water bowl. One time I left him home and he decided to get back at me because he doesn’t like to be stuck at home. He likes to go everywhere with me. Anyway… he went to his water own and literally took his paws and splashed out all his water from his bowl. I came into the kitchen and thought it was my mom who spilled the water when she was giving the dogs the water and then when I refilled th water dish… Scooby ended up doing it again. He thought it was a game! He is such a little troublemaker especially when he doesn’t get his way.

Gosh… I can’t believe how things are literally taking a downfall. I really need help badly because things just keep magnifying and getting worse. Today is Halloween and it used to be my favorite holiday. You know thighs are bad when I don’t even cut open a pumpkin. I went from decking the house out in decorations in past years to just making sure that the pumpkin is carved (especially so that at the very least we can at least have the pumpkin seeds to eat because nothing tastes the same as fresh pumpkin seeds directly from the pumpkin even if it says that it is from the pumpkin directly in the supermarket). But I just haven’t really been in the holiday spirit this year. I guess with everything happening… I just haven’t felt like doing anything. I guess I probably will cut the pumpkin open some time this week before I throw it out just to get the seeds but that is about it. So much for my Jack O’lantern that I always make and proud to show people.

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But I did get Scooby a Halloween costume. I took pictures of him in it when I first got it and I refused to let anyone see it. However, since it is officially Halloween today, I guess it is finally time to reveal the pictures and show him in his costume. Scooby is going to be a clown and he is the cutest.

Well… I guess that takes care of everything for right now. I hope you have a really good Halloween. Gosh… to think the holidays are just around the corner. I just hope we don’t have a really cold and snowy winter. Well… thanks again for all your generosity, prayers, and encouragement. I can’t tell you how much I appreciate everything that you have done and continue to do. If you can please pass this letter along or ask others for donations or even think of other ways to raise money… I would really appreciate it. Remember… no amount is ever too small and all amounts are extremely appreciative. Until next time.

– Fallon

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October 10, 2015

12052459_10101700138885030_813121250079471442_oHey-

I haven’t written in awhile and I wanted to update you on all that has been happening. I also want to thank everyone for the endless amount of love, support and prayers that have carried me through the most difficult battle of my life, once again.

I know so many of you continue to take this journey with me and I want to continue to share it, but right now talking, writing, or even thinking about the past months is still a bit too overwhelming and my body and brain need to recover. So if I haven’t posted in awhile and my posts aren’t like they usually are… just please bare with me.

2 months ago I found myself back in a place I’d hoped to never be again… back in the hospital and fighting to survive! I ended up falling and suffered from a massive hip fracture, pelvis fracture, and a broken femur. I guess when I do something… I do it good. Even the doctors all said that this type of break is rarely seen. To think… it was all because I fell. But that is what happens when you are as ill as me and when your only 33 years old but your bones are that of a 90-year-old woman.

I was so very sick that the surgeon was literally told by every single doctor not to operate because I would never make it through the operation. They even said that if I did make it through it by luck that I would never recover. Yet, after contemplating what to do and also trying to boost me up the best that they could, the surgeon decided to operate at the end of the 48 hour window because that was all the time that was allowed before they wouldn’t be able to operate. But due to my severe illness, they decided that the safest way to have this operation was to be awake for it.

What a horrible surgery to have. When doctors hear the surgery that I had and then that I was up for it… they can’t believe it. All I was given was an epidural. Oh my goodness. I thought that I would never make it through it. The surgeons literally had to drill out the bones in my leg and insert rods through them, as well as place screws and nails through my hip, knee, and femur. I thought that this surgery would never end. In fact, when I was able to finally speak and the surgeons could make out what I was saying, it was the time that they were stapling me and sewing me up. The first thing that I said was “Get the F*** out of me!” I never felt pain the way I did during this operation!”

I remained in the hospital for the next 2 weeks. Thankfully my dad and Scooby remained right by my side as well. I must say that I wouldn’t have made it through without them. Scooby was the first dog ever allowed in the operating and recovering room. What an amazing dog Scooby is. I seriously don’t know what I would do if I didn’t have him. He really is a huge help to me!

I can’t believe that this happened to me. Not only am I officially the “bionic woman” because I have rods, screws, nails, etc. in me, but it has really taken a toll on my whole entire body and illness. I am now medically in worse condition than ever before and I desperately need treatment to save my life more than ever too. But unfortunately I cannot receive the treatment that I desperately need because I don’t have the funds.

My world has literally been turned upside down with this new problem. I am sicker than ever and I now need more treatments that I cannot afford. Time is ticking down on the clock before I detonate and I am racing against it. I desperately need help because my organs are shutting down, my bloods are dropping, etc.

I will probably never know or understand why this happened to me. I keep thinking what I ever did to deserve this. I just want a normal life. I was robbed of so many things and everything that people take for granted… like walking, eating, going to school, working, having a social life, working, going out, etc.… has been taken away from me. I know I have a huge road ahead of me I need to just focus on today, but it is so hard when the cards are constantly being stacked against you.

But I am still trying to get well. Trying my best to conquer this disease and not let it conquer me. I may have lost some battles, but I am hopefully going to win the war in the end. I just need some help from others because I can’t do it alone anymore. I need the prayers, support, and even some help financially from others if I am going to get better. I hope I am not asking too much, but even a simple donation of $1 is one less dollar than I have to come up with and one less dollar that I have to pay for treatment to save my life. So if you can contribute anything, help me with a fundraiser idea, or even spread word of this and my website (www.gofundme.com/help4fallon) I would greatly appreciate it. Gosh… its not like I don’t have enough to worry about. With all that I have to worry about with my body shutting down and everything… worrying about money issues and where I am going to find the money for treatments should not be one of the things that I should have to even consider or think about. You know? How am I supposed to totally focus on my health and putting all my energy and power and focus into getting well when I have to worry about finances and how I am going to pay for the treatment that is going to save my life? It shouldn’t be like this. After all… I am weak enough. I am not strong enough to be able to worry about all this extra burdens. How much can I handle before I officially break?

I have been really trying to get well though. Gosh… I never thought it would be this hard. I can no longer be by myself at all, which means that I have to have a ‘nurse’ with me at all times. Yet, to have someone in the house is so expensive and the insurance isn’t covering it. Just another expense on top of the other expenses. It just continues to snowball. The bad part though is we don’t know how long we are going to be able to keep having a nurse, which is something I desperately need because of the cost of how much one costs. Money doesn’t grow on trees and there are limits to limits. With not receiving help from others, it really severely limits what I can and cannot do and it really jeopardizes my health. So I have to really prioritize what I need and don’t need

11229360_10101696893064680_8021471742043903980_nI have been going to Physical Therapy 3 times a week and trying to get movement in my leg again. And to think… Scooby is with me every single time. He really helps me get through it! It’s so difficult especially when I know there is a rod in my leg. Every time I fall or I turn in the wrong direction or feel something new… I always freak and think that a screw or nail is coming out. Even though the surgeon and Physical Therapist said that there is ‘nothing to worry about,’ I still do because when I had the surgery the surgeon said ‘it was like putting screws and nails into butter.’ Knowing that he compared my bones to butter… it really freaks me out. Plus with the way my entire body is and how fragile I am… anything is possible.

The hardest thing though has been getting over the feeling that I am walking on sticks. It took my forever to feel like I had a ‘leg’ again. I kept feeling that I had a bone from the leg and then a rod next to it. But then one day it just registered that my ‘leg’ was back and the rod and leg was one. I can’t tell you enough how good it feels to actually feel like I have a leg back!

So I have been trying to make improvements with physical therapy. I am in a real battle though because I am basically in a no win situation. In order for me to get better from the broken hip, femur, and pelvis… it really aggravates and makes my neurological illness worse. That is why it is really important to seek treatment and be able to treat my illnesses as well because not only is it causing me added pain but it is also spreading my disease and making me deteriorate worse (just in a different way).

Unfortunately in order to recover from the breaks, I need to do certain things like really put pressure on both legs, wear a shoe on the left foot, put tape on the legs, etc. which all cause havoc to my illness. I am extremely hypersensitive and doing all this causes real pain to me. Yet, if I don’t do this, I won’t recover because I need to put pressure on both legs in order for the breaks to set properly and for blood flow to resume in those areas, which will also further heal the breaks.

I am really trying to do as much physical therapy as possible. I try to bite my tongue and push through the pain as much as possible because I know how important it is to get through it. I know that I am also going against a clock because if you don’t do it in a certain amount of time not only will my disease spread and take over so that I will never be able to walk or be touched or anything in the leg and more because my disease especially spreads not only through ‘trauma’ but through something be immobilized, but the scar tissue will build up too much and I will then be permanently paralyzed in this position as well. So if I don’t want to lose function of my left side, I really need to do this.

So I try to do the exercises as much as possible. Even when I sleep or sit in a chair or anything else… I always sit with my knee bent because my knee is so stiff from the rods, nails and screws and I can’t bend my leg. So we have really been working on bending my leg.

Besides PT, I have surgery on my intestines to clean them out every week. I still have to go to Cleveland to have my colon removed, as my entire GI track is dead because of my gastroparesis. In fact, I should have been there in September if it wasn’t for this little accident that occurred. But in the meantime, I am going every week to the hospital to have my colon emptied because nothing moves through and as a result, I am filling up with toxins from everything that is sitting in the colon and not moving. They are also worried that I will end up going into sepsis because of this.

This is just one more thing to worry about. With all the new expenses that we have to pay for and it isn’t like we even had the funds before… we don’t really even know how we are going to get to Cleveland to have this operation. Dad and I were talking tonight and we were saying how desperately we needed to get to Cleveland as soon as possible, but we don’t know how on earth we are going to afford it because the little money that we had before (which wasn’t even a lot before and probably wouldn’t have even covered the expense before) is no more. So we are really in trouble. We really don’t know what we are going to do. So we are really hoping that perhaps something might come along… that a fundraiser will work, I will perhaps receive a lot of donations, etc. We are just praying something will happen. That is all that we can do right now.

In addition, we go for ketamine as well once a week. Not only am I given the ketamine through a whole day infusion, but also I am given ketamine in form of a block into my spine. I ideally need to get to Mexico because the amount of ketamine that I need (especially now because I am so much worse) is not FDA approved, but since I don’t have the funds for that either, this is the only option that we have. Although this amount isn’t enough to ‘cure’ me we are hoping that it will at least help with stopping the progression or slow it down, as well as help with the pain.

Gosh I really gotta get better. This has been horrible. I have a hospital bed in my living room and all I want is my life back. I am just praying that it happens!

On the bright side, I finished reading my first book in a long time. I can’t tell you the last time I actually finished a book. It was from my favorite author, Sophie Kinsella. I finished it just in time too because her new book is coming out the last week in October. I am now reading another book from my other favorite author, James Patterson. It is called “THE MURDER HOUSE!” His books are usually fast reading so I am hoping to be finished with it by the end of the month so that I can read Kinsella’s new one called “SHOPAHOLIC TO THE RESCUE!”

My parents’ anniversary is quickly approaching. They are going to be married for 40 years. I really want to make it extra special for them, but my hands are tied. They are really special parents who have done so much for me and deserve the very best. I can’t thank them for all that they have done for me and can’t tell them enough how much I appreciate it too. I feel so bad for all that I have done to them because they definitely don’t deserve this. They should be at the point in their lives where they should be enjoying themselves… not having to suffer because of me. They shouldn’t have to be burdened with problems because of me. So I really want to do something nice for their anniversary even though I can’t really do much and I am short on funds. I do have some ideas for something though, but I am not going to say right now because don’t want to ruin the surprise just in case mom and dad see this. But it is the ‘ruby’ anniversary and I want to make it special!

Halloween is also coming up. It used to be my favorite holiday of all times. I used to be the first one to go out and decorate the house and get the pumpkins and everything. I used to deck the entire house out with so many decorations from spider webs to corn stalks to hay to statues to tombstones to pumpkins to so many other things. I even went to get the hugest pumpkin that I could find to carve. Yet, you can see how things have changed because I don’t even have the energy or desire to do that anymore. Even to cut open a pumpkin and to make a jack o’lantern doesn’t intrigue me anymore. Of course I will still do it because it is a tradition and this is the only time when you can get pumpkin seeds and they taste the best. When you get pumpkin seeds in the store… they never taste the same. So… don’t want to miss out on that.

But I do have to say though it doesn’t even feel like it is Halloween approaching. I look at other houses and don’t see decorations like I used to when I did growing up. I remember always seeing other houses being decorated… even if they just had pumpkins outside. Where did everything go? Each year it seems like there is less and less trick-or-treaters and less and less people decorating. I don’t know but it seems like holidays are just getting less and less in celebrating. People aren’t into the holiday season anymore!

But I must say that Scooby is all set for Halloween. Scooby of course has a Halloween costume. I am not going to spoil it though and tell you what it is or post a picture yet. You will just have to wait to see it. I must say though that he does look adorable in his costume though. I can’t wait for him to wear it.

12017537_10101691928169370_7924967996628648251_oScooby is really an awesome dog. He has been going everywhere with me. He does so much that he literally zonks out in the car all the time!! He is so funny because he acts like he has such a hard life!!

Well… I guess I wrote enough. I just wanted to give an update as to what is happening. Today while the road to get back to where I want to be seems long and I feel weak, I am still here with another chance to regain my life. I am certain that with the help of my incredible family, friends, dedicated doctors and supporters that anything is possible. I just hope that I get the opportunity! I can’t do this alone and therefore, I am hoping through the support of my family, friends, and supporters that I never will have to. But I really need as much help as possible in getting funds so that I can get the lifesaving treatment that I desperately need. No donation is ever too small. Please spread the word of my website (www.gofundme.com/help4Fallon) because my life depends on it. Thank you again for all your love, prayers, and support.

Love,

Fallon

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