Nunnie's Story, part 4
Good evening every one,
Well, you are going to have to be the judge of whether my news is "Good" news or "Bad" news. I can't seem to make up my mind one way or the other. Hey... I ought to just poll you all and tally up the votes and whatever gets the most votes is what I will call it. Hehehehe. Just kidding. ;)
Ok... Dr. Baird the Dermatologist that presented me as a vexing case called me with the results. I apologize for not letting you know yesterday, but I was busy surfing the net trying to find out all that I could on the disease. Which was not much. In fact there were only 7 pages on the net that had info on it and most of them had one simple paragraph of few words about it. I'll put that info at the end of the page, but I'll tell you about the phone call from her first.
The disease I have is extremely rare. It is called: Adiposis Dolorosa. It is also known as Dercum's Disease. It affects only over-weight people. Women are 99% affected with few men. It strikes in middle age. The tumors are not actual tumors as a Lipoma is, however they are made of the same thing; fat tissue. They are more deposits than tumors. The come on rapidly, grown rapidly and are extremely painful. Gee... does that sound like any one you know?
So... I consider that the good news. I have a name for what has been happening to me. She stated that 4 of the doctors knew what it was. They had all seen it before. So, by being a freak of nature for the night, I was able to help 18-20 other doctors gain knowledge that will perhaps help someone else in the future.
Since the meeting she had researched and studied all that she could find on the disease. She has been in constant contact with Dr. Fillingame and my new doctor, Dr. Whetzell, as well as another internal medicine specialist that I was sent to. They all feel that this has nothing to do with the terrible finger, hand and lower arm pain since I had that from the beginning and it is a different type of pain. They feel that I have a small amount of Arthritis in my hands and joints. They also all feel that I have some sort of nerve damage or degeneration in my arms since my arms are still atrophying. They are 1/2 if not more the size they should be. I really look quite funny with normal sized hands attached to little tiny arms. Hehehehehe.
I explained to her how the woman doing the Nerve Conduction tests on me kept getting her figures all wrong and had to keep refiguring. I also explained how the probe kept slipping down my arm while she was adjusting the machine and she did not replace it. I told her that I thought perhaps I should request another test from a different person even though I know how much pain it will cause me again. She told me to be sure and tell my doctor this and by all means to request another test.
Now for the rest that I really rather consider the bad news.
There is no cure. There is no way to stop it, I will continue to get them the rest of my life. I can not slow them down. I can not make them go away. I can not stop them from hurting. I can not make them get any smaller. I can not stop them from growing. And there is no treatment for it at all.
Good News though, They are between the skin layers and therefore should not affect my internal organs. Also, I will not get them on my hands or my face.
Perhaps Bad News... I am now covered with them all over my stomach, front to back, top to bottom. I also now have them all over my lower back. The ones on my lower back have traveled down to my buttocks. Needless to say it is very difficult to sit, walk, lay, anything. I am starting to get them on the front of my neck. The little ones are still growing, but... perhaps good news? The large ones do not seem to be growing much. Perhaps the disease is concentrating on making new ones instead of growing.
I asked her if I lost weight and got down to my perfect weight if it would stop them, make them go away, etc. She said no. There was the slightest of chance that they might shrink a very tiny bit and perhaps stop hurting a tiny bit, but that it was highly unlikely.
She stated that the only thing that could be done was to work very closely with my physician in Pain Management. Basically the only thing to be done is to try and manage the pain in order to enable me to try and return to a normal life. I asked her if she would be my attending physician for this problem. She said, "No, you only need to have one physician. I feel that the best Physician for your treatment would be Dr. Whetzell." I was so shocked. You would sure think that since her and Dr. Fillingame were in the same office that she would have suggested I stay with him, but she didn't. I was VERY impressed with that. I guess she was basically saying that Dr. Fillingame was a worthless piece of... uh... garbage. Hehehehe.
So, I see Dr. Whetzell again on February 23. Right now I take 4 Nuprin every 2 hours, then 2 hours later I take 4 Tylenol... 2 hours later I take 2 Nuprin... 2 hours late I take 2 Tylenol... and this just barely cuts the pain enough to make it so that I don't cry my eyes out. When the doctor gave me the pain medication right after surgery, it was called Vicodin. That cut it enough that I could sleep then. I have not taken any of it since though as it is addictive. It also knocks me out and it also puts my mind in a real foggy, confused type state. Kinda hard to explain, but Rick told me that he would ask me a question, say like, "Who is that message from that you are reading?" He said I would answer something totally off the wall and not even pertaining to what he asked me like, "We are having a meeting at work tomorrow." Totally weird stuff. So my real concern is that if I am on pain medication just to be able to make it through each day at work, then I highly doubt that I will be able to hold a job if I can't even think. As it is, by the time I have worked 2 hours, even with all the normal medication I'm taking like Nuprin and Tylenol, I start hurting more and more and it's very difficult to make it through my last 4 hours. So... I don't know what I'm going to do.
My only real concern about the disease itself is that it seems that some people will actually die of it because of pulmonary complications. I'm not even sure what that is, but I guess this stupid disease could kill me. I'm going to try and research stuff about pulmonary complications so that I know what it is. I'm not sure how these lumps can affect my heart or lungs, but I guess it does. I just need to find out more about that. Also, I'm going to look up the words in the stuff I copied from the internet that I don't understand so that I am well versed on this by the time I go to Dr. Whetzell.
So... don't expect a whole lot of mail from me this weekend. I can't sit long and I'm going to see what I can find out about the unknown words. I will try to do what I can. Well, I'm going to end this letter here now and just copy and paste the information I found off the net on the bottom of this letter. I know it really isn't much info and I was highly surprised that there was not more on there. But, it is a very rare disease so I guess I couldn't expect much I guess. It is listed on the rare disease list by the National Health Organization or something like that. I don't remember what it was called now.
So, you all take care. Have a wonderful Valentines day. You all deserve it. Again, Thank you all for everything. Now for the info. :)
AKA: Dercum's Disease
*In adiposis dolorosa ("Dercum's disease"), presumably an anti-oncogene deletion syndrome, the patient has hundreds of lipomas which may hurt.
William Osler called this one of the three worst diseases (with subluxation of the sacroiliac joint and milk leg).
At least in adiposis dolorosa (and we may conjecture, in other lipomas), the fat isn't burned very well for energy.
A disease accompanied by painful localized fatty swellings and by various nerve lesions. It is usually seen in women and may cause death from pulmonary complications.
Dercum of Philadelphia has described a variety of obesity which he has called "adiposis dolorosa," in which there is an enormous growth of fat, sometimes limited, sometimes spread all over the body, this condition differing from that of general lipomatosis in its rarity, in the mental symptoms, in the headache, and the generally painful condition complained of. In some of the cases examined by Dercum he found that the thyroid was indurated and infiltrated by calcareous deposits. Dercum considers it a connective- tissue dystrophy--a fatty metamorphosis of various stages, possibly a neuritis. The first of Dercum's cases was a widow of Irish birth. When forty-eight or forty-nine her arms began to enlarge. In June, 1887, the enlargement affected the shoulders ,arms, back, and sides of the chest. The parts affected were elastic, and there was no pitting. In some places the fat was lobulated, in others it appeared as though filled with bundles of worms. The skin was not thickened and the muscles were not involved. In the right arm there was unendurable pain to the touch, and this was present in a lesser degree in the left arm.
The second case was a married Englishwoman of sixty-four. The enlarged tissue was very unevenly distributed, and sensibility was the same as in the previous case.
The third case was a German woman in whom were seen soft, fat-like masses in various situations over either biceps, over the outer and posterior aspect of either arm, and two large masses over the belly; there was excessive prominence of the mons veneris.
This disorder is characterized by painful subcutaneous lipomas in a background of obesity. It is about 5 times more frequent in females than in males. Onset of symptoms is generally in middle age. The fatty tumors are most often located on the trunk and limbs with sparing of the face and hands. Severe asthenia has been emphasized as a feature by some (Wohl and Pastor, 1938). Lynch and Harlan (1963) observed the disease in 4 members of 3 generations of 1 family and in 2, possibly 4, persons in 2 generations of a second family.
Where multiple lipomas are associated with obesity, psychic disturbances, weakness, and severe pain in the symmetrical deposits of fat, the condition is known as Dercum's disease, and occurs almost exclusively in menopausal women.
Hugs.... Pam :)
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At 11:44 AM 2/14/98 -0500, you wrote:
I got your good news Bad news mail and I can not tell you how my heart goes out to you. At least you now have a tag for your affliction. The first page of your story is up on my site this morning as I just finished it and you are the first to be advised....the other pages are being prepared and I am hoping that it will help you and others when they read it....There is something about putting a story up on the web that seems to put your mind at rest....no thanks is required from you for this ..it is a labor of love..May God Bless and give you strength. My prayers are with you.
Please forgive my delay in writing back again... as always. I went to the emergency room Sunday. I could hardly breath and my chest was hurting so badly for 3 days that I thought I was going to die. My arm hurt from my shoulder down to my fingers. The Vicodin did not even cut it. Anyhow, after spending 3 hours there, having chest X-Rays, tons more blood tests, they finally concluded that I had Tracheal Bronchitus. So, on top of everything else, I have that now. Sheesh! What next? A broken leg? So, I'm off this whole week. That means 3 weeks total now without a paycheck. Ugh... not real good, but I'll make out somehow. I always do. :)
I visited "Nunnie's Story". I gotta tell ya it is really moving. I mean if I hadn't known it was my story it would have brought me to tears. You may think I'm stupid, but I did read the entire thing. Hehehehehe. You have done a truly beautiful job. I love the way you have presented it. Thank you so much. I do hope that it will help give others strength and hope. It's still hard for me to believe that you have done this.
I was wondering if it would possible for me to use the Logo you made for my story on my page? I would like to link to it if that is alright with you. It is a beautiful logo. I love the print and the way you made it. I could not have done such a perfect job as you. :)
Well, I best get going. I'm terribly tired. I'm gonna eat, take a shower and hit the bed. The doctor doubled my pain medication, so that has helped quite a bit today. I'm sorry too that I have not been writing much since my diagnosis. I hope to get back to it soon. I just thank you so much that you are being so darn patient with me and for supporting me all the way when I'm not a real good Pen Pal. :)
Thank you again Doug. You have been just wonderful through all of this. :)
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