I’ve been indulging myself in a pity party the past couple of days, so I guess I’m ready to talk about it now.
First off, I do realize how very fortunate Dan and I both are to be in relatively good health! We give thanks for that just about every day.
You may recall that over a month ago I had an appointment with a different oncologist/hematologist. He told me that if I were a cancer patient, with my low white blood count he would admit me to the hospital…and that my low WBC was even lower than some patients going through chemo. The Dr ordered various blood tests, told me that I didn’t need to have another bone marrow test, etc. He also agreed that with my allergy to the cold and the hives that I should have the blood tests for criofibrogenemia.
Some of the tests took a lot longer to get back but I have had the results for about 3 weeks now. I guess the “good news” is that I don’t have the criofibrogenemia. The bad news is we still don’t know anything and this time around my WBC was down to 1.6. In October it had been 1.9. As I said, other tests are askew too, but this one is the easiest to explain to ya. Normal WBC is between 4.5-11. He told me that I needed to see a rheumatologist. I had seen one 3 years ago and THEY couldn’t find anything either. I have no symptoms of having joint or tissue problems. An anti-double stranded DNA test confirmed that I do NOT have lupus. I just can’t see what going back is going to do for me…other than wipe out my pocket book. Even though I had been to see this Rhuem dr before, I have to be referred again and start all over as a new patient. Had we called about 3 weeks earlier, they would have seen me again as one of their patients! But because it was just a hair over 3 years since I had been there, I have to start all over…and when you are referred it costs a LOT more. I AM going to talk with the Dr (if and when I DO set up an appointment) and plead my case to him/her and hope they will “bend the rule” a bit.
So what does all this have to do with hives???? I still think the blood counts and the hives go hand in hand. And my hives continue to get worse. This morning I went out to feed the birds and do some shoveling. I had on my winter coat, cap, heavy gloves and didn’t really give a thought to hives. By the time I came in my neck, ears, around my face and eyes and lips were all red and itchy and welts had started to develop. My lips looked like someone had injected me about 40 times with botox. My eyes still burn a bit and my chest feels cold (I mean INSIDE of me). I’ve told ya before that my Dad would get hives in his throat and had to be on medication for it. I have this great fear (and maybe it is an irrational fear) that one of these days the hives in the throat are going to happen to me…and I will be alone when it does.
I’ve been doing more researching this a.m. and have come up with some other “conditions” or maybe they are considered diseases because some of them DO deal with the autoimmune system (the low WBC).
This is some of the info that I found;
Hereditary angioedema (Angioedema is a swelling similar to hives, but the swelling is beneath the skin rather than on the surface. The swellings are called welts.) is an inherited form of angioedema and is related to low levels or abnormal functioning of certain blood proteins (C1 inhibitors). These inhibitors play a role in regulating how your immune(again the low WBC and other tests come into play here) system functions.
Complications: Hives and angioedema can, at the least, cause itching and discomfort. In more serious cases — when swelling occurs inside your mouth or throat — complications can include difficulty breathing or loss of consciousness. Anaphylactic shock (anaphylaxis) is a serious allergic reaction involving your heart or lungs. Your bronchial tubes narrow, it's difficult to breathe, and your blood pressure drops, causing dizziness and perhaps loss of consciousness or even death. This occurs rapidly, and requires immediate medical care.
Maybe I read TOO much. As I said I know that I am fortunate to have my health, but this whole thing is getting worse and worse and my WBC seems to be dropping dramatically. All the Drs I have seen are totally amazed that I do not get sick (colds, flu, etc). Hopefully I haven’t jinxed myself by telling you that!
So, that is what has been up with me the past several days. The whole thing leaves me in a blue funk so hence the pity party…I find chocolate helps! At least I don’t get hives from chocolate!!!
For the Record Book
1 week ago