Just wanted to write a quick update on what is happening since things are really deteriorating fast and I never know from one minute where I am going to be or how much worse things are going to get. I figured this way you will be up-to-date on everything that is happening and this way I don’t forget anything since so much has been happening, and this way you are always kept in the ‘loop.’
I am getting stuff that never happened before. We all know I belong in the hospital and to be frank with you… I know it too. I am really really sick. I honestly thought something was going to happen to me the other night…. I thought it was the night. Part of me was even really hoping it would because I was suffering so much. I am sooooo weak and suffering so much… not including all the pain that I am in. It just isn’t fair.
I have been really sick lately… sicker than before. Every time I think that this illness can’t get any worse or that I can feel any sicker, it always somehow always gets worse. It is just simply horrible. I just can’t get out of my suffering. I really need help desperately. I am getting so weak that I can barely get up or even move a limb. Even laying on the couch and opening my eyes is getting to be too much. I am in so much pain and so weak that it is just plain horrible. I still have my good times, but the amount of times that I have energy to do anything is really becoming limited.
Even eating has taken a great decline. Even the little that I have been able to eat before has really declined as well. I don’t have an appetite and my stomach is really killing me. I have been keeling over because of the pains in my stomach, as well as suffering from extreme nausea. Whereas before I was only able to really get down egg whites and ice cream and my ice-pops, it is even getting difficult to get those down now. I can’t even get down ice-pops anymore and for me not to get those simple things down, you can tell that things are bad. But, I have to force myself to have at least the ice pops because it is so important to have them since my heart meds and electrolytes and other essential stuff is in those pops.
But I must say that even my parents are getting extremely worried because at the very least I ate a little egg whites or even sat at the table for dinner. Now, I can’t even say that I do that anymore. I usually spend my time on the couch and dinnertime, which used to be one of my favorite times because it was a time that the entire family got to spend time together and talked (one of the very few times we all got to be together at once) is no longer possible. But, I am still hoping that this will pass and I will be able to go back to at the very least sitting at the table. It is just the pain in my stomach is so bad and I have been in too much pain to sit at the table. I have also been too weak to do so as well.
Even with the change of weather, it isn’t helping. I hate the change because it is too warm to use the heat and too cold to put the air conditioning on. Most people usually love this time because they can open their windows and get fresh air into their house. However, I hate this time because opening the windows is literally torturous to me and literally kills me. Not only does the wind and breeze that comes through the window kill me and cause me excruciating pain, but just the texture of the air and the quality of the air causes me great distress, as it really triggers off my autonomic dysfunction. It is bad enough that I am in physical pain because of my illnesses. However, nothing is worse than when the autonomic dysfunction kicks up. Sometimes I will take the physical pain over the autonomic dysfunction over anything because when the autonomic dysfunction starts up, it is unbearable. That is one reason I tell doctors that I don’t want any procedures that will stir up the autonomic dysfunction. It is the worse because it makes me unable to breathe, I get really hot and prickly and unable to cool down because I can’t sweat and don’t have the ability to regulate my body temperature, etc. It is just the worst. So to have that happen and then have all the pain I have from the RSD and gastroparesis, I am really a HUGE mess.
I feel so bad for my family because I am constantly making them suffer. They have given up so much because of me. They can’t go out to dinner because of me, they can’t open windows up because of me, we can’t go on family vacations because of lack of funds, etc. In fact, my brother has to live with the door to his room closed because in order for him to have his fan or his windows open, his door has to remain closed because I will feel it even though I am not directly in his room. I am so hypersensitive that I feel everything and anything.
To help with my breathing, I have a special humidifier that helps with it. I especially need it in the warm months and especially when there is this change of weather. However, my old humidifier broke recently and even though I always kept a back up, I ran into a huge problem because the back up machine was broken. I have had the same machine for about 10 years, so when I tried to get the same machine again because I was really happy with it and it wasn’t so expensive, I was unable to find it. As a result, I had to go with another machine. I am really had issues though with getting a new machine because of the money though. You would think that since it is for my health that I would not care about the cost because I need it in order to survive. However, I see the $ sign on everything and anything and I don’t want to spend money unnecessarily especially when I know we don’t have it and especially when I need treatment that we can’t even pay for as it is.
I see $$ signs for everything. Anything that costs money bothers me to buy because I know how important it is to save every single dollar because I need it for treatment. Since I couldn’t get the machine that I currently had, the machine I needed to get was so expensive. So I did a hunt to find the cheapest deal I could find for the machine that I needed. I ended up finding a place that had a deal that gave me $100 off because the box was ‘damaged.’ The actual product was supposed to still be brand new, but the packaging was supposed to not be in the best condition. I figured that it was worth it because who cared what the packaging was like as long as the machine was brand new. So after my hunt, I got it and it finally arrived today. We are in the mist of hooking it up because the filters have to soak overnight. I will let you know how it is when I hook it up tomorrow. I just can’t believe the madness I go through just to save money… even if it is for my health.
My mouth has really been getting worse lately. As I have osteonecrosis, the bones in my mouth are literally dying and protruding out. It is really both fascinating, scary, and painful all at the same time. The doctor gave me some medication that only he can get, but unfortunately it isn’t really working. I really wanted to see some surgeons to see if they possibly can do anything because it is so very painful, but unfortunately all the surgeons that can take care of this very rare condition do not take my insurance plan. It would be way too expensive to pay out-of-pocket to see the surgeons because I would need so many expensive surgeries, x-rays, appointments, etc. I would also need bone grafting, which is extremely expensive as well.
However, it is so painful to have this condition since the bones are literally being exposed in my mouth. They are coming out more and more as time progresses. Just in the little time that passed from my past appointment with the doctor, the doctor saw a huge difference. There are surgeries to help with this illness, but like I said before, they are so expensive and I don’t have the funds or the insurance to have it. I found a study where they get rid of the dead bone and allow new bone to grow back. After the CAT scan to diagnose the problem, patients first take tetracycline for two weeks. Once in the operating room, the doctor exposes the problem bone and shines an ultraviolet light on it. Tetracycline sticks to bone and lights up under the purple light. Accordingly, the bone that doesn’t take it too much in certain areas they remove and bone that doesn’t take it up at all is removed as well because it’s dead. The healthy bone is left in place to re-grow. If only I had the funds to have this done.
In the meantime though… I am all booked to go to OHIO now. I am supposed to be leaving for OHIO on the May 19th so that I can go to the Cleveland Clinic. I have been there before, but I am now going back in hope that they can help me. However, I am not going to be seeing the same doctor that I saw way back then though. He has since retired and is now only seeing patients like once a week.
Even though he is seeing patients once a week and could possibly see me, I decided to pass on seeing him because in order for this doctor to see me, I would have to have his approval to take me on as a patient since he is technically ‘retired’ and only working on that limited time. In order for him to do that and to give me an appointment, he first has to review my records and it would take to long for all this to happen since they only are able to get my records via fax or mail. So I figured it wasn’t even worth sending it because my records are like a volume because there are literally like over 200 pages. It would take me forever to fax them since I am unable to email them. I don’t want to mail them either because even though I could probably send them overnight, it would still take forever to probably get an appointment because by the time the records get to them, they read it, they review it, etc.…. it all takes time. Plus, it isn’t like I can easily get to the post office to mail them either and it will be very expensive too if I mailed them overnight.
So I figured that it would just be easier to have an appointment with someone else. I wasn’t too impressed with the doc I saw the last time anyway and either was my mom. He reminded me of the good humor man because all he did was dress in complete white and he didn’t have the best bedside manners. It was really weird because the whole entire hospital was all white and had no color. Then this doctor also dressed in pure white too. There was absolutely no coloration anywhere. My mom kept calling him the ‘good humor man.’ He didn’t really take his time with me either. So I really didn’t mind in changing.
I found this neurologist there that is supposed to be doing ketamine comas and be knowledgeable in my neurological disease. So I am going to see him in hopes that he can do something. I am just really hoping that I am not wasting my time because when I called the office and spoke to the secretaries, they first didn’t know what I was talking about and if the doctor treated my illness or did ketamine comas. It was like they never heard about my illness or this procedure. But after they put me on hold and asked someone, they told me that he did treat and was familiar with my illness. I did ask them a couple of times to make sure that they knew what I was talking about and were supposed to be giving me the ‘correct’ info, so I am hoping I am not going and wasting my time.
I am also hoping that by going to see him and have him do it that I will be covered more by insurance. I won’t be covered totally and it still will be quite expensive because I will have copayments and traveling expenses and other costs, but it won’t be as nearly as expensive as if I had the coma in Florida because the coma in Florida was totally out-of-pocket with no coverage whatsoever. The appointment with the doctor wasn’t even covered. Even though I much rather have the coma and see the doctor in Florida because I think he is a better doctor and I would probably be in better hands, I just can’t afford it. The doctor wants just for that one particular coma about $20,000 and that isn’t including all the other expenses or the cost to see him either.
In addition, I am also hoping that since I am at the Cleveland Clinic, it is also a very well known hospital and therefore, it will be able to handle my GI problems as well. After all, if I went to Florida, I wouldn’t be able to deal with the GI problems unless the ketamine would help it (which fingers crossed that it does). So, hopefully this will be a better option over all. In hopes that the Cleveland Clinic will be a better option than Florida, we had to postpone Florida to a later date because I was supposed to be going to Florida the same time as I was scheduled to leave for Ohio. However, we are rescheduling it for June just in case it doesn’t work out at the Cleveland Clinic. At least I will have a backup plan and something to fall back on because I desperately need a ketamine coma and someone to help me with the neurological disease ASAP. So hopefully I will make it that long.
In addition, we are running into a big problem because Ohio is also scheduled so close to leaving for the Mayo Clinic. Dad doesn’t know how we are going to be able to do it honestly because we literally come home on Tuesday or Wednesday and we leave that Sunday for Minnesota. Dad doesn’t know if that will work out because he has to get his work together and has to get everything situated before we leave. After all…he can’t miss that much work. When he doesn’t work, not only do we not make money as a family, but the business also doesn’t make money because there is no one to do the work. Also, this is my dad’s busy season and this is the time that my dad waits for. If he doesn’t make the money now, he isn’t going to make it at all, and if he isn’t around to grab the work or do the work, the customers aren’t going to wait around for him. You know?
So I don’t know what is going to happen with MAYO. I can’t really cancel it because it took me forever to get the appointment and if I cancel it, I will probably have to wait forever to get another one. Plus… the hospital is the top in the country and deals with all the rare diseases. So I am hoping that they really will be able to help me especially since they have that study going on. But on the next breath, they wanted me off all my meds before they saw me so who knows definitely if I am going. So… if I don’t go… at least I will be going to Ohio anyway. You know? My dad doesn’t want me to cancel Ohio and postpone that because he said that would be the most stupid thing I can do since that is covered on our insurance and nothing else is. If they have something there and we are covered than that would be awesome.
So we are supposed to be leaving then the 19th for Ohio. This will be the first time my dad will be there because I went the last time with my mom. My mom reminded me that I really won’t be able to do anything when I go there. Unlike the other places we go, we won’t be able to do anything in Cleveland… not even go for a walk. That is the one hospital that there is absolutely nothing to do because they don’t let me outside. The hospital even has its own police precinct because the area is so bad. The hotel even tells us not to go walking outside because the area isn’t good at all. That is the one big downside about going to Cleveland. At least when we go to the other hospitals we do stuff… even if it is just going to for a walk. So I will just load up my iPad and spend my time on it.
Well… I also want to share great news. I was contacted today by a UK-based charity that provides support for people in chronic pain through a radio show and help-line. It turns out that they want me to write for them. They had read my blogs and they decided to ask me to write a story for them. I was really touched and really excited at the same time. I wasn’t going to let an opportunity like that slip away. I wasn’t going to let it slip away the chance to have my story unheard so of course I accepted the deal. After all, the more people that hear my story the better, right? Maybe someone out there will hear it and be able to help me right? After all… I got so much taken away from me because of this disease… friends, being able to eat, being able to walk, being able to be a doctor, being able to shower, having a family, etc. so maybe this is a way of contributing to society and making a difference. My disease and struggle is so unheard of and maybe at the very least if I can’t be helped and will not per se be ‘saved’ and be able to ‘live,’ at least maybe I can make a difference in the world by bringing attention to my illness and letting it be known in the world that it does in fact exist. After all, before I came down with it, I never even knew something like this existed. You know? Maybe even though there is no help for myself per se, maybe I can help others in the future that will be going through it or even help others going through similar situations showing that they aren’t alone.
My new book finally came out. I am so excited because I waited so long to read it. It is called “Wedding Night” and Sophie Kinsella writes it. I thought maybe they would release it a day earlier because I have noticed that sometimes that even though they have a release date, they sometimes release the book on iBooks a day earlier. So I was hoping that this would be the case as well with this book. Of course since I wanted it so badly, it wasn’t the case. But it was now officially released so I will probably be starting it today. I will let you know how it goes.
I have been trying to eat baby food in order to try to get any nourishment. So I have been eating these things called PUFFS. They are organic finger foods for babies. It is kinda like eating cereal. I usually eat the “Apple” flavor, but I just got a new flavor called “Greens.” I opened it up tonight and I was really surprised to find that they were literally green. I was wondering what they were going to taste like because of the flavor was known as “greens” and they have all different flavors known as apple, strawberry, bananas, etc. so I knew it had to be some kind of flavor on that terms. But when I saw the color of them, they reminded me of spinach. After tasting them though, I am not quite sure what they taste like.
I have also been busy with working for my dad’s website. At least I have been helping him out as much as I can too. Trying to keep myself as busy as possible because not only does it help pass the time, but it helps my dad out and hopefully brings in more business for him. It actually lets me “contribute” something instead of just ‘existing.’ It also gives me some normalcy. You can always check it out at http://www.intercountypestcontrol.com
Well… I guess I will be going. Just wanted to write and let you know all the updates. I still need lots of funds for treatment. If you can please think of any way of getting the necessary donations, I would really appreciated.