When this all first started, back on September 23, 1997, it started out as pain in my hands and arms. There was a lot of weakness and my hands and arms were going to sleep. In addition there was a huge lump inside the crook of my elbow on my left arm. It was about the size of a walnut. To just touch it sent me into tears as it was so painful. They thought it was Carpal Tunel, but ruled that out. Then they said it was Over-Use.
I hadn't been typing much since September when it hit, and yet I was not getting any better. I had been begging my doctor, Doctor Fillingame, since September to do a biopsy on the first lump and he never would. Then I started asking him to refer me to a specialist and he wouldn't do that either. Since September I developed tumors on both my arms. The one huge lump at the crook of my elbow on my left arm turned into more lumps up the inside of my arm. In addition I developed another huge lump in the crook of the elbow in my right arm. At that point I started getting tumors, multiple tumors daily. They would grow very rapidly. What would start out the size of a pin head would become the size of a peach pit by the end of the day. Each visit I begged and pleaded with my doctor to please do a biopsy or send me to a specialist and he wouldn't.
Though he was very hesitant to send me to specialists, but eventually did. None of them had any idea what was wrong with me. The last doctor I was sent to was a Dermatologist. She did a Biopsy on the first tumor and then the very last tumor. The Biopsy did not help and she did not know what was wrong. However, this most wonderful doctor asked if she could present me as her case at the next Dermatologists meeting. It was at this meeting that one of the 25+ doctors who examined me was able to diagnose me.
Basically the illness boils down to this: I get tumors all over my body on the inside. They start out on the nerves. As they grow in size they rip and tear my nerves which causes me excruciating pain for up to a minute as one comes on. It feels like someone has taken a jagged hot knife and is digging it around. From then on the tumors continue to grow at times and at other times they go in sort of a remission. Once or twice a year they actually will subside a little. However, after those times they will come on with a venice.
Eventually the tumors will increase in size as well as quantity to the point that my internal organs will no longer be able to function. Since the disease is NOT being researched, no doctor really knows how long this will take. However, I have found at that no one has lived past 52 years of age.
This illness is very painful. I literally live on pain pills. I try to be very careful because after a while my system will become immune to the ones I am currently taking. At that time I will have to switch to a new kind. I don't want to run out of types of pain pills before I am gone. Thus I take them ONLY when I can hardly stand the pain anymore. However, this month alone I have taken over 60 of them. Grrrrrrrrr. There are only so many types out there so I have to be VERY careful!
To just touch one of the tumors causes me terrible pain. Therefore I am unable to wear any type of clothing that puts pressure on my body. Most of the time I wear T-shirts that are about 4 sizes too big for me and nothing else unless I have to go out in public. At this time I have tumors over about 85% of my body. Luckily I don't have them on the bottoms of my feet so I am still able to walk.
The illness has progressed to the point now that my abdomen is pretty full of them. I am not able to eat more than a tiny bit at a time because they are all around my stomach. I have to eat about every hour and then only small amounts.
It is getting harder for me to breath as they are encircled around my lungs. I have to consciously remind myself to take as deep a breath as I can every so often. If I don't, I become very dizzy because I am not getting enough Oxygen in my lungs.
Probably... at least right now anyway... the worst thing is bladder control. The tumors are all around my bladder as well. They continually press upon my bladder and if I laugh or cough I lose control. When in bed and asleep I have virtually no control. When I feel the need to go to the rest room I have to try my very best to get there as fast as possible. Most of the time I don't make it and go on the floor even though I am only about 10' from my bathroom.
This limited me for quite some time as far as going and visiting people. However... I finally broke down and got those adult diapers. Man... I can not tell you how long I fought that. I was just so embarrassed to have to use these when I was only 47 years old. But... it became necessary for me to do so. I have to drive 35 miles to the doctor and other types of appointments so I needed something for in the car and at my appointments. They are quite expensive so I only use them when I go to appointments and to go see my Gma and Uncle.
I stay at home 99% of the time unless it is an absolute necessity to go somewhere. Riding in the car and just plain sitting or laying down is painful because of all the tumors. When sitting or laying I have to position my body just so in order to not have pressure on the tumors. Therefore any shifting in the car rocks my body on to my tumors. So... home I stay. :(
My sleep habits are horrible. When I go to lay down most of the time the pain keeps me from being able to sleep. There is honestly no way to position my body in bed and NOT touch at least some of my tumors. I think you have probably noticed that sometimes I post for like 2 days straight and then you don't hear from me for a day. This is because I can't lay down and sleep. However, eventually my body just gives out after 2-3 days and I sleep regardless of the pain. Even though I try to go lay down and sleep during those 2-3 days I just can't. So, I stay awake an on my computer trying to get my mind off of it. It's actually kind of fun to be awake for 2-3 days at a time though I'm physically exhausted. Hehehe.
At this point my private parts have been spared so to speak. I have them on the outside, but NOT on the inside. There is a friend of mine in California that has my disease and has had it longer than I have. The poor woman has them INSIDE her private parts. Can you just imagine? It is horribly painful for her as you can imagine.
In addition to this disease, I and the others have gotten several other things. It seems to go with the disease for some reason. I have Diabetes now. It seems that people with my disease develop either Diabetes or Hypoglycemia. We all have gotten High Cholesterol as well as Fibromyalgia. Most of us have High Triglycerides, however I did not get this until about 2 months ago. They are supposed to be around 200 and mine are now 2200. Ugh. Hehehe. Let's see... in addition, I and some others have... Sacroiliac Dysfunction, Tendonitis and High Blood Pressure. Lastly... if that is not enough... due to all of the medication I have to take for these various things, my Liver Enzymes are now elevated. The doctor said they were not a lot right now, but we have to be VERY careful as most of my medications affect my Liver in a negative way. Just one more thing to worry about. :)
Anyhow... that's about it. I have honestly tried to make this as short as possible, but there are so many things about this disease that it is hard to make is real short and sweet.
I shall end here. If you have any questions AT ALL... please do NOT hesitate to ask. I don't mind one little bit answering your questions. It's just that I hesitate to tell people about my illness because I don't want anyone to feel sorry for me as I'm truly VERY, very, very happy. :)
The "Next - My Diary" is a copy of my E:Mails to my friends as I went through this whole ordeal. The "Diary", of course, goes in to more detail on what the disease is/what it does and how it progressed with me the first few months. It starts from the beginning with the discovery of my lump, my fear and horror at getting more and more lumps daily, the fight I had with my original doctor to be sent to specialist so I could be helped, the problems I had at work and on through being diagnosed and finding a "Wonderful" doctor that was willing to help me. As you can imagine I went through a whole lot of different emotions during this time. Needless to say the E:Mails reflect this. I've split them up on several pages so that it would be quicker loading and easier for you to read just a few at a time if you wish.
To send me an E:Mail if you have any comments or questions