I figured that I would post an update since I haven’t written in awhile. Lots have been happening, but just haven’t felt “well” enough to write. Things have just been getting worse and worse. When is it ever going to get better? I keep thinking that it is going to get better really soon, but it just continues to get worse and worse. I can’t believe how much “bad” stuff can be thrown my way. I can’t believe how much “bad” stuff a person can be diagnosed with. It is at the point that you ever hear of MURPHY’S LAW? Well… that is like my life.
Things have gotten really bad. I am feeling worse than ever and the news that I am getting from doctors and such aren’t good. It is imperative that I get back to California as soon as possible, but it is impossible to do so because of financial reasons. However, I fear that I am only going to deteriorate even more and perhaps even die if I don’t get back there soon because of how bad things are getting. We really need to get back to California because out of all the doctors that we have seen throughout the country (and we have seen a lot), the best place for me is in California. I never have seen such knowledgeable doctors who are willing to help and who actually “care” about me. They really are great! I have such an awesome “team” out there that do stuff that no other doctors do. I really feel comfortable out there. I am also going to probably (99.9%) going to need a small bowel transplant, which entails getting a new small intestine, large intestine, esophagus, stomach, etc. It is basically almost a “definite,” but we are just waiting for the final report to come back. However, it is really risky and really radical. This transplant has the highest rejection rate of all transplants. Only 8 hospitals in the country do this transplant and Stanford is one of them. Therefore, that is one more reason why I need to get back to California and back there fast.
However, like I said, “There really isn’t any money to go back to California.” Between the cost of my illness and the traveling, etc. the money is basically gone. The bills are amounting up and there really isn’t any money left to go back to California. I never have seen it so bad. Before… we were always able to “scrape” something up. However… it is at the point that even that isn’t possible anymore. Unless something is done to bring in some funds or donations, I fear that it is going to be “awhile” before I will be able to go back there because of the finances. I really need help immediately because if I don’t go back and back soon, I fear that I am not going to make it.
Things have been really getting bad with me. I can’t believe honestly how bad things are getting. You can tell that things are getting bad because I used to write “updates” and such all the time. If you look, I haven’t written in awhile. I just don’t have the energy to write anymore. I want to update you so much because there is so much to tell you. However, I just haven’t felt well enough to do so. So… I just have to wait til I feel “up to it” in order to do it or I write a little at a time.
I have been so weak lately. I basically feel like I am coming out of my body and I feel like my body I literally “shutting down.” I have been getting the weirdest sensations. In plain English… I literally feel like my body is “dying.” I never know if I am going to wake up the following morning because of how I am feeling. It is a feeling that is so difficult to explain. I think that unless you really experience the feeling that I am experiencing, that is the only way you will understand the feelings that I am undergoing. I literally feel so bad and that my body is dying off that I don’t really know how much I have left. As a result, between how I am feeling and the results I have been getting from doctors, as well as the news from the doctors as well, I have written my parents a letter explaining where everything is and what to do when the day should happen that I pass. I explain to them in the letter how great of parents they were, how thankful I was to have them as parents, and a lot of other personal things. I also go into detail as to where everything is and what to do so that everything can be taken care of and they will know what to do when that day finally happens such as who to contact, where things are located, etc. I don’t really want to die, but you can never be too careful… especially with how I am feeling. My mom won’t even look at the letter because she is saying that I will “NEVER” die. But, it is actually time to wake up and smell the coffee. I am not getting better… I am only getting worse… especially since I can’t get back to California!!
I haven’t really received the greatest news from doctors. I finally got back some of the results from the bloods that I took when I went to California the last time. When I went to see the neurologist, he took like 18 vials of blood. He basically tested me for everything. Well, we finally got answers on a lot of things.
First of all, it turns out that the brain tumor is doing worse and must come out. Lots of my levels are getting worse since it is on the pituitary gland. It is really dangerous too because it is located on the “master” gland of the body. The neurologist said that the tumor must really come out because of all the problems that it is causing. Not only is it causing elevations in certain blood levels that it shouldn’t be, but it is also causing severe pressure in my head and vision problems. I constantly feel like there is so much pressure in my right eye and that there is a “fog” in it as well.
The neurologist said that the tumor has to come out, but I really need to get to California to have it done. I have seen other doctors in other hospitals, but they have been reluctant to take it out because of where it is located and because of my complicated medical history. Therefore, I must return to California because that is the only place that is willing to do it. I have to have it done soon because it is only going to get worse, especially since the medication that I have to take for my paralyzed GI tract actually “feeds” the tumor. The neurologist said that they aren’t sure if they are going to literally “open” my brain and take it out or use “Gamma knife.” He wants me to meet with the neurosurgeons, but of course that means that I will have to make another trip there to do so and like I said before, the well has run dry as of now with money and therefore, it is impossible to do so at the current time.
In addition, I also found out that I have another condition called CARNITINE DEFICIENCY. The fatty acids cannot enter mitochondria and be used to make energy. Reduced energy production can lead to muscle metabolism being impaired, causing myopathy, hypoglycemia, or cardiomyopathy. Fatty acids may also build up in cells and damage the liver, heart, and muscles. This abnormal buildup causes the other signs and symptoms of the disorder. I am at risk for heart failure, liver problems, coma, and sudden death. I am already having symptoms that my heart feels like it is giving out and symptoms of heart failure. It isn’t good. Very scared. Also… looks like brain tumor on pituitary gland is causing more problems Waiting to hear more about that too. When it rains it pours! I just hope I can be helped and I can get to Cali again before it is too late.
Gosh… you would think it would stop there, right? What are the chances to be diagnosed with all that stuff, right? How much can a person take, right? Well… to top it all off…they think that I might have another rare disease called MNGIE. I really have all the symptoms and it would explain a lot. However, what are the chances that I have this illness, especially when it is so rare? But… with me… you never know because anything is possible.
But guess what? When I was going through my chart, I saw that I was indeed diagnosed with this illness. The last that I heard from the nurse, I was told that we were still awaiting the final diagnosis of the disease. I was told that the blood work for this disease was still “pending.” However, if that was the case, why was it in my chart that stated I was diagnosed with this illness? So… I immediately called the neurologist to find out exactly if I was indeed diagnosed with this illness.
Unfortunately, the neurologist is on vacation til Monday. So… I won’t know exactly what is going on til then. When I spoke to the covering physician, the doctor said that the bloods are still pending, but he did say that it was “weird” for it to be listed if there wasn’t some “proof” or evidence that said that I was in fact diagnosed with this illness. He said that perhaps the neurologist received a letter that was preliminary already before the final blood work. But, we don’t know for certain as of yet. But, we just know that it shouldn’t be in my chart unless there was some info that came back that said that I was indeed afflicted with this illness. But, I guess we will have to wait til next week to know definitively. Even though this illness would clearly explain everything that I am going through because I must say that I have all the symptoms and when you read and learn about this illness, it describes my life… I am really fearful of having this illness because it is indeed life threatening, as no one as lived past 50 years old. This disease is also known as Mitochondrial Neurogastrointestinal Encephalopathy Syndrome.
I have also been having a lot of GI issues. It turns out that my nervous system and my GI system is not working right. When I spoke to the doctors, they insisted that I am extremely complicated and I have a lot of doctors working on my case. They said they are working on my case and trying to figure out what to do. It is the first time in my life that a real “team” approach is going on. I have the best doctors from all different specialties putting their heads together and therefore, I am hoping that between all of them… something can be done and will hopefully be able to “save” me. After all, my life depends on it.
Anyway…. everyone here is on edge since we have to get back to Cali and there really isn’t any money to do so. Dad keeps saying to me that he “isn’t going to let me die”… but I keep saying to him “it isn’t in your power.” I see the pain in his eyes and I see how much it hurts him knowing that I am hurting and dying and yet, no matter what he does… he can’t do anything to “help” me. It even hurts him that something as simple as take me back to California for treatment, he can’t even do because of the finances. All he can do is say “hang in there. I am not going to let you die. We are going to make it back to California.” I really don’t want to leave my dad because I know how much I mean to him. I am so afraid of what is going to happen to me, but I am more afraid of how my dad will take it. I don’t think my dad will ever recover if something were to happen to me because I am his “little girl.” My dad is not just my “dad.” He is my “hero” and my very best friend. If I could make it all better for him, I would. I want to get better so much for him.
I can’t understand what I am doing wrong though because I desperately need help and yet, I can’t receive the help (financially) necessary to get me the help (medically) that I need. I have tried so many ways of getting funds so that I can receive the necessary “help” that I can get. I have posted flyers, made websites, contacted the media, wrote to famous people, etc. I have even written to Queen Elizabeth because I am so desperate. I was willing to try everything and anything… just so that I can get some help even though I knew it probably wouldn’t help. I just figured that there would be no harm in trying. You know? However, no matter what I did… they were all failures in raising funds.
It is so unfair that no matter what I do… it is unsuccessful. It is a shame that they follow and bring attention by televising other stories, but no matter what I do… I can’t get my story across. It isn’t fair. I don’t know what I am doing wrong… but obviously I am doing something wrong. I am just so tired of fighting. I am tired of suffering. I am tired of sitting on the fence and waiting to hear things. I just can’t take it anymore. I feel weaker than ever and I honestly don’t know how much longer I can hang in there.
I desperately need funds so that I can receive medical treatment, as my life depends on it and yet, I cannot receive them despite all that I have done in the past to get them. I just can’t understand it. I can’t understand what I am doing wrong. I turn on the TV and I see other people on TV bringing attention to their own stories. However, no matter how many times I tried contacting the media and such, I have yet the opportunity to bring attention to my story and to be able to publicize my story so that I can receive the necessary help that I need. If only I could get my story across the media like everyone else does. It might really help. There are so many people in the world and even though money is “tight” because of economic reasons, if people would only donate $1, it would surely add up. However, I don’t understand why I can’t get my story across the media, whereas I turn on the television and I see other people getting their story across. What am I doing wrong? I guess the saying goes… it isn’t what you know it is whom you know and unfortunately, I don’t know anyone so I am out of luck!!
I desperately need help and therefore, if you have any suggestions about raising funds or any “connections,” please help me. You can leave me a comment on this website or you can contact me at Spunkyfal@aol.com. Any advice or any help that you can give me would be much appreciated.
Want to hear something weird? When I was younger, I was diagnosed with Mono. However, they say that once you have Mono, you can’t have it again and it also always shows up in your blood as having it. However, when they do Mono tests on me nowadays, it always shows that I don’t have it. It is the weirdest thing. They think that I have gotten so sick and such that it literally “washed” out all the antibodies out of my body. Can you imagine? I can’t even fathom the idea. But apparently it is possible.
In the meantime, I went for a bone infusion today. I desperately needed this bone infusion because my bones are really bad. They are severely deteriorating because of the tumor. The tumor is basically “eating” away at my bones besides the other reasons why my bones are deteriorating. My bones are so very bad that the doctors are worried that I am going to get a life-threatening fracture. That would be the LAST thing that I would need. Each year I lose so much bone mass. In the past year, I lost like 16% of bone in my hip alone. It just is really bad.
So I went for the bone infusion today at Columbia Presbyterian. The only thing that really stinks about going for these infusions is that I get so very sick from them. I always get extremely high fevers from them and I get very achy from them as well. It is normal to get the side effects of being achy and a slight fever from the treatment, but due to my medical condition of me being hypersensitive and no immune system and such, it really impacts me a great deal more. Everything that happens to a “normal” person is magnified in me. Therefore, the fever to me is usually really high. I usually get like a 105 fever, which is extremely dangerous to me because it is usually difficult to treat in a typical individual… let alone someone in my given situation. Also, the achiness that the normal individual feels is magnified for me and therefore, it feels like I have been hit by a ton of bricks. I feel like I got hit by a cement truck, especially since I am already suffering with TONS of pain due to my current painful condition that I suffer 24/7 265 days a year. I already suffer from a painful neurological condition that I don’t get a break from and therefore, this only makes it so much worse. To think… I am on such potent meds for my painful neurological condition already and they don’t even “cut” it. You can’t imagine how much pain I am in now because I have all this added pain. It just never ends.
This bone infusion makes me so very sick that my room looks like a “walk in pharmacy.” I have everything lined up on my desk so that I can try to help myself as much as possible. But, no matter what I take… it is like taking water because nothing seems to help. If the meds are actually doing something, I don’t want to feel like what it is like without them. You know?
I had such a hard time with the bone infusion today though. They brought in a special person today to start the IV because of how much pain I am already in and how “sensitive” I am. A typical IV stick is like someone sticking a knife in me because I am so hypersensitive. So… to make it as easy for me as possible, they brought in the best person to start the IV.
I have really been getting more hypersensitive than ever. I can’t even sit still anymore for an IV placement. My dad couldn’t believe how bad I have gotten with just sitting for an IV. I used to be able to get IVs easily. Now… I can’t even sit still. It has gotten so bad that now I can’t even get any IV placed in me without getting lidocaine placed in the lines so that it “numbs” the line. I am just getting worse and worse.
Want to hear something funny though? When the IV was putting into my arm, they were trying to keep me calm and take my thoughts off the pain of the stick of the IV. Therefore, they were talking to us about our trips to San Francisco and what has been happening lately. Anyway, the doctors said to me “You must really hate hospitals by now!” I was like “U THINK?”
Everything is still up in the air as to where we are going from here with the bones. I am probably going to have to try giving myself injections again for my bones. I have done so in the past, but had an allergic reaction to it. The doctor wants to try me on it again, but since I had the severe allergic reaction in the past, he wants me to come in and do the first dose with him just in case something should occur. So… it looks like that will be occurring probably next week. Just another injection to add to all the others. What stinks though is that since I am so thin, I don’t have many places to choose where to put that injection. So… I have no other choice than to put all three injections into the same place, which is my stomach each day. My poor stomach. It hurts so badly, especially when I am in so much pain already on a daily basis and I am so hypersensitive too.
My blood work is also falling. I have another appointment for bloods on Friday. Hopefully it won’t fall again because it is already in the “danger” zone. I don’t know how much more my heart can take because how long can my heart play around in the “danger” zone without being seriously hurt. I mean… I can easily have cardiac arrest or have an arrhythmia with the level that I am in now. It is just that they don’t want to put me in the hospital right away for this condition because the hospital is the worst place for me… due to infection (I have no immune system) and how I am treated (as I can’t be treated like a typical patient). Plus… there is no guarantee that it would even benefit me because there is no guarantee that it would bring up my bloods. Even if it does, it probably would only go down again once I leave the hospital, so unless I actually “live” in the hospital… it probably wouldn’t matter. You know?
Have you been watching the Olympics? I have been busy watching the OLYMPICS. Then again… they are the only thing on TV. I am obsessed with Gymnastics. I love that sport. Too bad I am so old because I would love to have been a gymnast. Too bad I went into figure skating instead. But… my time has come and went and no more can I be a sports competitor in that sense. Have you been watching the Olympics? I had a gut feeling that the women were going to win gold from the beginning. Usually when I have “gut” feelings… they are usually right.
I can’t wait to see the new BATMAN movie that came out. I just love the BATMAN movies, but since I can’t go to the theater, I guess I will have to wait for it to come out on DVD. So… guess I will just have to wait a little longer.
I have also been trying to read as much as I can. Due to my illness, it has been really difficult to read since it is difficult to remember things. To think… I one time had the best memory, as I had photographic memory. So… I am still trying to regain the ability to read novels, as it is a constant battle. I am trying to read a great book called A DISCOVERY OF WITCHES by Deborah Harkness. It is a really good book, so I am hoping to be able to finish it.It is a trilogy, but only the first 2 books are published so far.
Well… guess that is about it. I will keep you posted and let you know more when I have more to tell. Thanks again for all your encouragement and support. Again, if you have any ideas or suggestions for raising funds, please let me know because I desperately need to get back to California because my life depends on it.