Happy Passover and Happy Easter for those celebrating either holiday. I know I haven’t written in awhile, but it just has been because I have been so very ill and things are getting really bad. It is getting harder and harder to write due to how much I am deteriorating and that is why the updates are getting less and less. I really want to keep you as updated as possible, but it just is so very hard with everything that I am feeling. That is also why even though I am updating you with this blog, I really don’t know how much or how long it is going to end up being because of how horrible I am feeling. Like I said before, I am feeling really badly, but I wanted to really tell you what has been doing. So I figured that even if this blog is ‘brief’ or not complete, at least you will know ‘something’ and know at least that I continue to EXIST! At least I am continue to hang in there despite all the horrible things that are happening.
As you might be aware, I should have been in California this week. However, due to unfortunate circumstances because we didn’t have enough money, we weren’t able to go. It was really important for me to go too because I have gotten so much worse and have developed so many new symptoms that needed the doctors to look at. I am rapidly deteriorating and if I thought I was ‘bad’ before, it was nothing compared to how I am now.
Lately I have been doing so horrible. I have developed so many new symptoms that really need my specialists to see. First of all, the discoloration in my body has worsen so much. I always had discoloration throughout my body, but nothing compared to what is going on. It has never been so dark and especially in my left leg and foot, it basically has gone from being purple and blue to being black. It almost looks like my leg is necrotic and ready to fall off. Before the discoloration used to go back to a somewhat normal coloration when raised, it remains totally discolored even when raised. I’ve also developed discoloration in parts of my body that has never discolored before. I now even have my face turning weird colors among all the other parts that have turned in the past. It is really freaky. I am like a ‘chameleon’ because I can change colors in a second.
Another way I have worsened is that the pain and sensitivity has gotten so much worse as well. Not only has it worsened and gotten worse throughout my body, it has also spread to the few remaining parts that were not affected before like parts of my face and scalp. I can barely touch my face and scalp without feeling intense pain.
I have also developed severe pancreatitis and my pancreas has failed in addition to all my other organs that are failing. My amylase is extremely high and I have also developed lesions in my mouth and throat. The doctors believe that it is attributed to my poor immune system because my immune system is literally failing as well. I am just a complete mess.
I am also producing so much mucous. Even though I have been producing mucous and blood for a while, it is nothing compared to what has been happening. I am producing mucous and water from my toosh all the time and not to sound disgusting, but it is like I am urinating out of my toosh all the time. I am so entirely thirsty, but we think it is the result of all this mucous ad water coming out of me and me dehydrating.
I am also losing so much weight… weight that I can’t afford to lose. I am already weighing in the 60s and there really isn’t much weight to lose. Any pound I lose is extremely dangerous and in the past few days I already lost about 3-4 pounds, which is extremely a lot considering how little I already weigh. But we think it is all ‘water’ weight and not true weight but even so… it is still extremely dangerous. It is something that definitely needs urgent help because a person can’t live at the weight that I am at currently… there is no way that I can lose more weight.
So like I said before, I had appointments with my top specialists in California this past week and should have been in California as we speak. But, I now had to reschedule due to the lack of funds. I am hoping to be able to go back to California the end of May, but we honestly don’t know if I am going to make it that long… especially with all the weight that I am losing so fast. However, that is the soonest that we will be able to get to California. We are hoping though to be able to go to California the end of April instead, but of course this all depends on the amount of funds we have and the doctors schedules (the longer we wait, the less chance we have of coming in at that time because they are booking up). Therefore, we are listed in coming to California in May because it will give us more time to raise money because it would be a shame to make arrangements to only have to cancel them and postpone them again. It not only really messes up our schedule, but it really causes problems with the doctors and hospital in California because they are expecting us and make arrangements In their schedules for us too, whereas they could have other patients instead. After all… they too need money and if I am not coming to California, they need other patients to make up the money that they are not making on me. You know?
During this time in California, I will be going for surgery to be getting tubes and a ketamine coma… in addition to finding out more what is going on with me. It is to buy time until something comes along, as well as to try to strengthen me as well because I am deteriorating. I need the coma because they are hoping that it will help me ‘accept’ the tubes. However, we have a major problem because since we canceled this previous trip to California, we won’t be able to see my neurologist, which we really need to see because even though there are many neurologists throughout the USA, he is the only doc that understands my disease and is knowledgeable in it to a point. However, because he is such a good neurologist, he has no appointments available until September. He was already making special arrangements to see me this past week, but he is unable to do so in May. As a result, I will only be able to see his Nurse Practitioner. Even though she is smart, it is not the same as seeing him because they don’t see everyday cases of me. I am very complicated and complex and even he has a difficult time with me. It really was important for me to see him, but now I have no other choice but to see the nurse practitioner. In addition, I need to go for the surgery and have the tubes for at least 2 full weeks starting on that Monday. Yet, the Nurse Practitioner can only see me on that Tuesday, which means that the soonest I would be able to come into the hospital for the surgery would be the Wednesday (day after), which would only give the doctor 1 ½ weeks with the tubes. The doctors are very top specialists and have set schedules where they are only in the hospital 2 weeks on and 2 weeks off so it is important to start the inpatient surgery at the very start of their service so we can have the full 2 weeks. I have asked if the neurologist can see me as an ‘inpatient’ but they said that cannot happen since his office is at a different location. Never a dull moment and I am always hitting obstacles. If only this past trip had worked out.
So, since I haven’t gone to California, I just have to hang in there longer, which I am trying. But honestly… I don’t know how long it can happen. I am rapidly deteriorating and my heart and body has been feeling extremely weak lately. I am in so much pain and agony and I am also so very weak. The amount of ‘good’ times that I have been having are getting to be so very few and it has gotten to the point that my dad has to literally carry me places because of how ‘weak’ I am.
In the meantime, I have been trying to see if any doctor around here can help me because help is of the essence. Yet, even seeing doctors around here are very limited due to lack of funds. I can’t even go for blood tests because I don’t have the funds. We have never had so many ‘money’ problems before and it honestly scares me. That is why I am really so desperate for others to help me. In order to see doctors and receive the lifesaving treatment I need, I desperately need the help of others. If anyone can please help me or have any ideas how to raise funds, I would really appreciate it.
I have managed to see a few doctors. One of the doctors that I have seen was for my leg because it is severely discolored. It really looks like it might be amputated. So I went to the doctor to see what he had to say. It turns out that a pulse can’t be felt in the foot. However, in order to confirm that there is really a serious problem and no blood flow to the area, they would have to do a test on my leg that involves putting cuffs on it and inflating them. I would never be able to tolerate it, so it is kind of out of the question. It really doesn’t matter anyway because even if the test did in fact confirm that there was no blood flow whatsoever, they couldn’t do surgery to open up the blood flow such as bypass or anything. There is a point in the leg that that can’t do surgery and bypass below a certain spot because the veins and arteries are just too small and therefore all that they would be able to do would be able to ‘amputate’, which they don’t want to do. They don’t want to amputate because even if they do, it wouldn’t probably do anything but make things worse. It would probably spread my disease and I would probably get my neurological disease especially bad in the stump, as well have phantom limb pain on top of everything else. It would be one disaster on top of another. Never a dull moment. You know?
Of course though they would have no choice but to amputate if it goes gangrene. The doctor said I need to be especially careful because I have to ‘baby’ the leg. I have to take extremely SPECIAL care of it because I can’t afford to have any bacteria get in it or have any cuts happen to whatsoever. Even a simple ingrown toenail or bumping my toe or having a toenail cut my other toe can be a huge problem because I cannot heal. I can easily get an infection in my leg and that would easily cause gangrene and if that would happen… they would have no choice but to then amputate. I also have to be extremely careful because I can get frostbitten very easily in that leg too because it is so cold and such. I don’t have the normal sensations in that leg and therefore I need to take extra precautions to make sure my skin doesn’t crack or get cuts or get bruised or get cold or anything else that would cause an infection or gangrene.
But I have discovered something lately. Even though you cannot touch me because of my extreme hypersensitivity, there is a spot on my leg that actually if you grab and squeeze ends up releasing the spasms and contractions in my entire leg. It is the weirdest thing. However, of course when you release the spot the leg spasms more and contracts more, but it is amazing that when you squeeze that one spot that the leg actually relaxes and the spasms and contracts relax as well. It actually kinda makes the leg feel better to a point. But no one can explain why. The doctor thought it could possibly be similar to when you cut the circulation off in a limb and it feels ‘good’ right before it goes numb with pins and needles. But he honestly can’t really explain it though.
I also asked the doctor about the sympathectomy. I had a sympathectomy years ago to try to save my leg from my illness. However, the doctor ended up saying that to do this now for my illness, it is really unheard of. Even when I had it done back then, it was really rare. But at least I had it done because if I didn’t… I would have lost my leg way back when.
I also asked the doctor about hyperbaric oxygen because I am so desperate for anything and that is one thing I haven’t tried. Yet, it is expensive and I was wondering if he thought it was worth it because as you already know… I don’t have money to waste. He told me straightforward that he didn’t think that it would work and that I have to be careful of people selling me stuff because I have such a complicated disease and they know how DESPERATE I am to get well. He told me how people take advantage of people like me and will try to sell me anything like the Brooklyn Bridge because they know that people in my state will do whatever just to get better. He is definitely right that I would do whatever just to get better, but I really need to be careful because I don’t have money to waste. He said he looked at the literature and in reality there isn’t any literature to back up that the hyperbaric would help in my condition.
However, I have recently seen another doctor and even though this other doctor said the hyperbaric oxygen would not work, this doctor is trying to get the insurance company to approve paying for the hyperbaric oxygen chamber. Everyone thinks it is never going to happen, but the doctor said that they can either pay for this oxygen chamber and see if it works or they can pay for me to have a whole big operation to have my leg amputated. I guess if this other doc gets the insurance company to cover the hyperbaric, I will try it because I definitely don’t have anything to lose as long as I don’t have to pay for it. I just don’t have money to waste. I am desperate for anything… I just have to be careful where I put my money.
I also have developed lesions in my mouth as I have told you in the previous blogs. They are getting so much worse and I cannot wait to see the surgeon/pathologist at the hospital because they are worsening and getting so painful. Not only are they just in my mouth (where they started), but they are now also going down my throat and as a result, it makes it so very difficult to swallow. On top of all my other swallowing problems because of the autonomic dysfunction, I now can’t swallow because of the lesions. I have an appointment on April 11th, but it just feels so far away. I was hoping that they would be able to get me in sooner, but apparently they aren’t able to. I just hope that after I wait all this time that they will be able to help me.
I have been having so much trouble swallowing. As a result, the amount of things I am able to eat and drink is extremely dwindling. I have discovered thanks to my best friend a new food called PUFFS. It is a baby food, but it seems to be one of the ‘better’ things to have. It is so weird that I am back to eating baby food. But it is good because this food dissolves in your mouth so there really isn’t much to ‘swallow.’ In addition, it sits better in my stomach better than most things because of how light it is and how much it ‘dissolves’ in my mouth. Even though I vomit up everything including this, it does sit better in my stomach better than other things. Too bad though that these puffs really aren’t fattening or have calories. They are kinda of ‘empty’ things to have, but at least they are something and at least they have nutrients. I am really shocked though that I am eating baby food because never would I think that I would be eating that again. At least it tastes good though.
Talking about having something to eat, I can’t really eat anything because I end up vomiting everything up. However, I did have something a few days ago that actually made getting ‘sick’ kinda worth it. Whenever I eat, I am always like “why did I end up eating” because I have to vomit afterwards and I absolutely HATE doing that. I was never a person to vomit… even when I was a kid. I would get so very nervous when I was little and I would always have to have someone with me when I threw up because of how nervous and scared I would get from it. Anyway, I haven’t had a calzone in the longest time. Even though I only ate about ¼ of the calzone and ended up throwing it up, it was absolutely delicious. I never had something so good. Like I said before, it kinda made eating and vomiting worth it.
I am really getting worse. I think my cat knows it too. It is so weird because whenever I am feeling worse than usual, my cat never leaves me. My parents call her my ‘babysitter’ because they can always tell when I am doing ‘worse’ because Missy won’t leave my side. Well, lately she has been staying by my side more than ever. In fact, she is so clingy that she probably can tell how bad things have gotten. All throughout the day she wants me to constantly hold her, as she follows me around. Then throughout the night she stays in my bed with me meowing and wanting me to kiss and pet her. Perhaps her meowing is her way of making she I am awake and to make sure that I am still breathing and alive. Even when I am on the computer, she constantly goes and stands on it so that I can’t type and so that I am with her only. But all and all, I wouldn’t trade Missy in for the world. Even though she has been getting really annoying lately, she is definitely worth the trouble. She is definitely like my best friend and if I didn’t have her, I don’t know what I would do. I love her so very much and she has been there for me from day one.
The amount of good days that I am having are becoming less and less. However, I have had a best friend that has been determined to make me have as good as a time as I could have. She is always willing to do whatever she can in order to make sure I have FUN and such. She is also willing to go beyond the call of friendship and take me to doctors and research further into my medical illness. She is always looking into new ways that could possibly help me. Even when she found a doctor, she was willing to come all the way to pick me up to take me to that doctor, which was not around the corner. She definitely it one great friend. I wouldn’t know what I would do without her. She certainly makes a huge difference in my life because she is always there for me… there to help me, there to advise me, there to have a shoulder to lean on, there to talk to, there to have fun with, etc.
She is certainly the best. She does so much for me that I only wish I could repay her in some way. One of the best features of her is that she treats me more than just a DISEASE!! She not only helps me with my disease, but she looks at me beyond just being a disease and treats me like a NORMAL person. When I am with her, I actually feel NORMAL because we talk about normal things like books, movies, etc. and we do normal things… like she comes over and takes me out… things that I haven’t done in the longest time. Whereas my world without her was consumed as being a ‘disease,’ she really has opened up my world for the better. If it wasn’t for her, I definitely wouldn’t be smiling as much as I am now. Even though she has her own life (as she works, has her own family, etc.), she is always willing to take care of me and be there for me. She is like a best friend and second mother all put into one. She only wants the best for me. In fact, even on the few occasions that I do fall asleep in her car, she will literally drive around until I wake up because she doesn’t want to wake me up. She goes far beyond the call of duty as a friend and for that… I will be forever grateful. Even though I know she has her own life and I know she is extremely busy… I look forward to seeing her. I feel just like Cinderella with her because when I am with her, I feel like I am like Cinderella when everything is transformed and when she goes to the ball. Yet, like Cinderella… all things have to end at a certain time and just like when the clock strikes 12 for Cinderella everything goes back to her old world, the same goes for me when the time of 2 o’clock rolls around because I have to take meds and eat and such. Once that time comes, it is back to having my life revolve around my disease because not only do I worsen and deteriorate as the day goes on, but starting at 2 o’clock, I have to eat, take meds, take injections, vomit, etc. When one ends… the next starts and when everything is done, the cycle starts again. I can never wait until 9 at night because then I only take my night meds and I am done for the night.
I also love being with her son. Her son is the absolute cutest. He is such a happy kid and you can’t be miserable or show that you are in pain or sick when you are around him. Therefore, her son also ‘helps’ me in more ways than you can imagine. Not only does he put a great big smile on my face because I love to play with him and such, but he helps me smile and not show all that I am going through because I don’t want to scare or be a ‘downer’ for him. After all, when it comes to kids… you always have to put them first… especially when they are as young as her son. They are so helpless and they depend on you. They are so innocent as well and they don’t need me to scare them with me being a grouch or being or showing how much I am really am sick. I also have to thank him for introducing the puffs to me because if it wasn’t for him, I would never have tried them.
Well… I guess I should be going. I really can’t really write anymore. I am in too much pain and I need to rest. Like I said, I just wanted to write an update really quickly because I haven’t written in awhile and wanted to let you know what has been going on. I am counting down the days until my favorite author if all times releases her book. Sophie Kinsella releases THE WEDDING this month and even though she releases only like one book a year… it is worth the read. She is simply amazing. I also have been playing around with my iPhone and photos and experimenting.
P.S. Things are getting so bad that we are even thinking about going down to Florida to see the doctor for my neurological/ autonomic dysfunction disease doctor. We are seriously contemplating going out of the country for the huge ketamine coma because it has the potential of reversing the neurological and autonomic dysfunction, but it is extremely risky and expensive. I really need a ketamine coma in a high enough dose, but unfortunately it isn’t FDA approved and as a result, I will have to travel abroad to get it. The cost is really expensive and of course it won’t be possible without the help of others because it will cost $100,000. But, this can be the only answer to my problems because no matter what, I need help with the neurological/autonomic dysfunction because that is what is in CONTROL!! I am also hoping that perhaps if it reverses the neurological disease and autonomic dysfunction, perhaps it will reverse and help my GI issues and the rest of my body issues as well. After all, they said that Ketamine is extremely powerful because it is a NMDA receptor and has the potential of reversing everything because it reboots my system like a computer would reboot itself. But first thing first is to get the funds because without that… it definitely won’t be possible. To think… it would definitely take away the pain and suffering that I deal with on a everyday basis 24/7. What a relief that would be!