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.
I 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.
I 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.
Well 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.