It is getting closer to leaving for HOPKINS and things aren’t going too well. So I just wanted to blog a little because I am really having a hard time coming to grips with this arising issue. I never once ever thought that I was going to ever have to deal with something like this. I also wanted to write so that I could keep you abreast on latest news on what is happening with me. SO many things is occurring in my life right now and it feels like I am the titanic ready to go down.
First of all, I guess I should start with the issue that I am totally having a difficult time trying to get a handle of and dealing with. Unfortunately, my health is not the greatest and I am rapidly deteriorating. That is no secret and we all know that. We all know how much I really need this very expensive treatment as well, but unfortunately after all these years of paying for my treatments, my family can no longer afford it without the help of others. It is really sad that my life is really hanging in the balance because we can’t afford the treatment needed to save it. That is why I have been so desperate to raise funds and such because I am really deteriorating and if something isn’t done soon, I will soon die. But unfortunately, my efforts of raising funds despite all that I have done… blogging, writing to the media, hanging posters, trying to spread the word through Facebook, etc. have all basically failed. Even though I did manage to raise some money, it is nowhere near the amount of money that I need for treatment and it was done over such a long period of time that we are in such a deeper hole than ever that unless we really get some help soon, we will no longer be able to afford treatment for me at all despite making all the cuts that we have made already.
I am in so much pain and suffering… not only physical pain but emotional pain as well!! Not only has this disease taken a physical toll on me, but it has taken an emotional toll on me as well. I am so tired… tired of the physical pain and suffering, as well as the emotional. No matter how many cuts we have made in our lives and even in my treatments, it is never enough to keep our heads above water and to even allow me to receive the necessary treatment that I need to save my life. We are sinking faster than ever and without the help of others the Titanic is going to be soon completely underwater and sunk to the bottom… never to come back and able to revive itself. I really can’t hold on much longer and I desperately need treatment. I am trying to hold on as long as I can, but the fact is that without treatment… I will soon die. Sorry to be so blunt, but that is the truth.
Anyway, I just just learned that despite all that my family has given up in their lives, they are now going to give up their two last precious items. My parents have already given up all materialistic items already, as well as stopped buying things a while ago. They have even basically given up on enjoying their own lives and living out their own lives because we haven’t been on vacation in years, we don’t even go out to eat, we don’t do anything for fun such as go to the movies or the beach or anything because of finances, etc. It is definitely not a way for my family to live, but they have given up everything because all money has gone to my treatments and we really have nothing left to do other things. It is a shame how this disease has not only robbed me of my very life including walking, eating, friends, social life, etc. but it has taken the lives of my family as well.
Since you can’t get blood from a stone and I am really suffering and deteriorating, my parents are trying to do whatever they can to save my life. I really can’t blame them for it because I am their daughter, but I really wish they wouldn’t give up their lives for me. I feel like such a burden to my family and they are such terrific people who have done so much for me in the past that they don’t deserve all that is happening to them… especially now!! My parents are at a point in their lives where they should be enjoying themselves. They are just about 60 years old and they should be having fun. Yet, they are working harder than ever, and they don’t do anything for themselves. We remain all the time in the house, don’t do anything for fun, don’t go out, and we can’t even fix up the house like my mom would like because of the lack of finances. I only wish things were different.
I am really upset though because I just learned that despite all the cuts that my family has made in the past, they are about to give up the last of what they have because I can’t receive the donations and funds that I need in order to have the lifesaving treatment. We have been hoping that I would be able to raise money though donations, but even though I have raised some, it is not nearly enough. My treatment is just so incredibly expensive, as I require numerous medications, surgeries, and procedures that are not even all in the local area. We have to travel across the United States including places like John Hopkins in Maryland and New York.
Since I will die without these treatments, my parents are now saying that they are going to sell my dad’s watch and my mom’s engagement ring. These are the last 2 items that my parents have left. They cherish these items for so long and love them so much, and it absolutely breaks my heart to know that it has come down to this. It just shows the true love that my parents have for me, as they will do anything just to try to get me well. But, I vow never to let that happen and do that to them! My family has basically given up everything that they could and these items are the only things they have left.
I am really scared because we are at bottom of bucket and really need your help. I am really hoping that someone will please help us so that I can get the treatment that I need to save my life. I am quickly deteriorating from a life threatening disease and desperately need help because we cannot afford the necessary treatments on our own anymore. I don’t wanna die!! So I am hoping that I can find another way out of this so that it won’t come down to them selling these last 2 precious items. I already told them “under no circumstances are they to sell it!” It just kills me to know that they are even considering it. If I find out that this has to happen, I don’t know what is going to happen. I already taken enough from them, I don’t want to take this from them too. So I am just praying and hoping that something will happen and turn this all around and another way will come about so that this won’t have to happen like this.
To make matters worse, I am really not doing well. I am actually really scared that I might be losing my left foot. My doctors were always fearful that I would lose my left foot because of how discolored my left leg and foot would get. It is at the point that the leg gets black as night, and it remains black even when raised. I have really bad circulation and they have said that even if I do get better, they don’t know if I will end up having to end up losing it after all because the tissues have been deprived of oxygen for so long. The doctors are also so fearful of me getting any cuts or anything on that foot because of the lack of circulation. They said that if anything occurred on that foot, it can easily lead to an infection, gangrene, and amputation.
With that being said, I had an accident this past weekend with a can, as a soup can ended up falling on my foot. Not only is this an excellent way to spread my disease because my disease spreads like a wildflower especially through ‘trauma’, but my toes are more discolored than anything and more swollen too. My toes are really black and there are even ‘bubbles’ on them too. I am so scared that something is going on beyond just a soup can falling on them and perhaps ‘bruising’ my toes like a normal person would get from a can falling on them. I am scared that not only did it stir up my illness because of the ‘trauma,’ but I am scared something else is going on that will lead it to have to be amputated. I am so scared because this is the last thing that I want. I don’t want to lose my leg. I am trying to make an appointment with the doctor and hopefully will get one as soon as possible because the foot definitely doesn’t look good and we all know the difficulty it has in healing too. Like I said before, the doctors are always afraid of something happening too because they said that if something does happen…it would be extremely difficult to heal and could lead to amputation. So that is freaking me out even more because I am so scared that not only am I wondering what is occurring because of what it is currently look like, but I am scared that it is going to turn into something worse and possibly lead to an amputation because I can’t “heal.” So I am just trying to keep as calm as can be and as positive, but it is really hard.
In addition, I went to the orthopedist for my left leg as well the other day because I am having difficulty with that leg in terms of extending it and such. I can’t basically get up or sit down because anything that causes the knee to extend and flex causes me extreme pain. I also find extreme pain around the kneecap and it goes up the thigh along a certain muscle and nerve. I also found a bump by my knee too that felt like a jelly ball but I had no idea what it was.
So I went to the orthopedist to find out what was occurring because not only was I in excruciating pain, but it was getting to the point where I couldn’t even get up or sit down without help because of the severe pain. Anyway, it turns out that the doctor doesn’t exactly know what is going on completely but he thinks it has to do something with my illness. I hate how they always blame my illness because I am so medically complicated that they just don’t have answers for me. The doctors just look at me in disbelief and without answers. I go to doctors for explanations and such, but they never can give me reasons or answers. With my illness, it is like I am rewriting the medical books.
When I showed the doctor my leg and he saw the jelly bump, he told me that it was a whole huge nerve exposed. He wasn’t exactly sure why it was occurring, but he did know that being so thin as I am was not helping. I also have severely thin bones so that also causes additional problems because they are constantly rubbing each other. Anyway, the doctor said what I was experiencing was like having ‘root canal’ in my leg because the whole nerve in my knee and thigh was exposed and giving me pain all the way up.
He knew exactly how painful this all was and wanted to help, but he wasn’t sure if the treatment plan that he had would work. He told me that he had an injection that he could give me to hopefully quiet the nerve and such, but he did say that ‘all bets are off when dealing with my illness because we never know how my body is going to react.’ Not only could my body not ‘accept’ or ‘take’ the injection and the injection would be pointless, but the injection could easily stir up my illness easily and exacerbate it even more. I am suffering so much already and barely able to take it… I don’t know if I could take it if the disease was to get worse. You know? The doctor just had no answers… he didn’t know if the injection would work, stir up my illness, or anything. Like I said before… all bets were off.
I ended up going for the injection because of all the pain I was in and I figured that I really had nothing else to lose. I figured that if I didn’t go for it, I would always wonder if it could have ‘helped.’ Plus I figured how much ‘worse’ could it get?
Well… the injection was the most painful injection that I ever had. I am extremely hypersensitive and even the most innocuous touch is extremely painful. So you can imagine how much being stuck with a needle hurts. I literally wanted to jump out of my skin. But thank goodness I had my brother’s girlfriend with me during this procedure because she held my hand throughout the entire thing and tried to make me feel better. I thought that it was never going to end though. I thought the needle was going to be in there forever because the pain was so intense.
It only worsened afterwards. Not only did the injection not ‘take’ and work, but I ended up having such a bad reaction to it. My blood pressure ended up dropping and I became very faint, dizzy, and with a severe headache on top of the pain that I was not experiencing in my leg from the injection as well as from my disease being exacerbated. The doctor had me lay down for a while and I thought it was never going to end. It took me awhile in order for me to be able to be able to leave. But like I said before, thank goodness I had someone with me like my brother’s girlfriend to take such good care of me. I would have never made it through this without her.
So now I don’t know what the next step is for my leg and knee because I am still in excruciating pain and can’t really get up and down without help because of it. The injection didn’t take and I don’t know what else now the doctors have in mind. I guess I will have to find out. Hopefully the ketamine comas/infusions might do something.
Talking about reactions, but I am also having a bad reaction from the new injection that I have started. I have recently started the injection for my bones because I can’t have the infusion anymore for my bones due to the osteonecrosis. However, even though I did start the injections in the hospital and I did have a reaction there, the doctor was hoping that with time that the reaction would dissipate and I would be able to tolerate the injections because I so desperately needed them because my bones are really weak and deteriorating. I can’t get the infusions anymore and these injections are the next best thing.
However, the reaction to taking this injection has only been worsening each time I take the injection. I keep not only getting swollen and getting a rash, but I keep getting flush and my autonomic dysfunction keeps acting up. In addition, my heart always keeps bothering me when I take it, and that is the part that really worries me. I have an appointment with the doctor in the morning to discuss these side effects with him and to see what he wants to do about them because I don’t know what he has planned. I am scared because I don’t want to stop the injections because I know how desperately I need them because I am so at risk for a life-threatening break, but I am so scared to take them too because I know the reactions that I have been having.
I also have really been deteriorating so much and been weaker than ever. I have given my dad a great scare the other day because he really thought that I wasn’t going to make it through the night. My cat, Missy, has not left my side since. But like always… I always survive and pulled through because I told my dad that I would never leave him.
Well… I guess that sums everything up as for what is happening right now. I have bloods in the morning. I wonder how horrible they are this time. I think I should start saying that “I don’t get an bad news, I just don’t get any good news” instead of always saying that I am getting bad news because it seems that I am always getting bad news. I also have an appointment on Thursday with the surgeon for the Osteonecrosis. I am hoping that he is not going to remove more ‘dead’ bone because it is so painful. O yeah, I also have another ketamine coma/infusion planned for Tuesday so at least that is something to look forward to. At least I know when I go for that it will be one day of a “vacation” from this disease and life.
Like I explained previously, I was also thinking about going to pray at the lebavitch rebbes grave. He was a rabbi that lived in the 1900s and he was said to be as closely connected to god as Moses was. People travel to his grave from all over the world and go there and pray and cry their hearts out to him about anything. People report miraculous recoveries after visiting his grave. When he was alive and would give blessings when they came to see him, they would again say it was miraculous what resulted. So I was planning on going later this week as well because things are getting so bad. I am leaving next week for HOPKINS (if all goes well) and therefore, I feel that this is the perfect time to go between everything that I am going through.
Well… I guess that is about it. Thanks again for all your continued support and encouragement. If you can think of anything to raise funds for my treatment or anything, I would really appreciate it. I would appreciate it more now than ever if you can please spread the word of my website and please bring awareness to my situation because I really need your help. Without your help, I fear that I won’t be able to receive the treatment that I need to live and I really don’t want my parents to give up the 2 last things that they have and cherish. They already have given up so much (including their lives) and I don’t want them to have to give up those last two things too. After all, that engagement ring is a symbol of her commitment and love to my dad and it is so meaningful to their relationship. My dad has only one watch that he has had for over 15 years and it means the world to him. I vow for them never to have to give up those items no matter what. So… I am not going to let them give them up when they already given up so much already for me. It isn’t fair to them!
Thanks again for caring and for reading my blog.