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

 

 

Advertisements
Leave a comment »

January 15, 2015

12485890_10101783904218630_7164818205724693554_oHi-

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

  • Fallon
Leave a comment »