This n that

[Guest guest]

Hello, all. Thanks to the stupid " energy crisis " here in So. Cal., we had a

4 hour power outage this past week. When the power went off without any

warning, I was online (as usual). Seems there must have been a power spike

or something, because when the power came back on, my computer wouldn't boot

up. Ended up losing everything on my hard drive. Also later discovered my

modem was fried and have had to replace it. My system's still a little

unstable and I'm still having problems. (grr!) Needless to say, it's been

very frustrating being out of touch, and somewhat costly since I haven't

been able to list much on eBay this week.

Anyhow, I've been perusing all the messages that have come through this week

(chatty bunch this week, aren't we?). I'd like to say welcome to all the new

members. I've been a member of this list since about March 2000, and a

chronic hiver for about 13 years. I suffer from angioedema, giant urt.,

delayed pressure urt., heat-induced urt., dermagraphism, and periodic bouts

of anaphylaxis. No cause has been found, in spite of years and years of

numerous tests.

Regarding migraines: I've also suffered some debilitating migraines over the

years. I don't think they are related to my CU, though. I found that

estrogen, either in the form of birth control pills or as estrogen

replacement therapy, greatly contributes to them. Perhaps other drugs do, as

well? I had migraines from the time I was a teenager, when I first went on

" the pill. " After much time battling them with drugs, I learned how to

control them using hypnosis. I can literally go from a full blown migraine

to no pain whatsoever in 30 minutes using this technique. Those suffering

from migraines, if you haven't tried hypnosis, I suggest you talk to a

therapist who knows what they're doing along these lines. The man I saw made

a cassette tape for me during one of our sessions when he hypnotized me, and

I use this tape whenever I get a migraine. Been successful with this for

about 15 years or so.

Regarding joint pain: As many of you know, I also suffer from rheumatoid

arthritis. CU and angioedema alone can cause joint pain. Whenever I get

hives on my knees or other joint areas, they swell big time and get very

painful. I think it’s just another aspect of this beast. People with

autoimmune problems, which CU is considered to be, often have other

autoimmune things going on as well. It's like a domino effect - one thing

goes wacky, then another, then another. (Sigh) Plus, of course, there's

always good old prednisone. We all know what THAT does to our bones and

joints (and our waistlines).

Regarding Scarlet Fever: My daughter had scarlet fever when she was in

kindergarten. My hives started when she (actually " they " - I was blessed

with twins) was 3. So I doubt there is a connection there for me. But I can

see where scarlet fever could be at least an initial trigger for some

hivers. Here we go again - disease, surgery, or other trauma to the body

just before the onset of CU. Interesting that this was also the pattern with

my arthritis - the doctor told me a bout of Fifth Disease (aka Human

Parvovirus) triggered it in my case. I think my CU was intially triggered by

endometriosis. I was in excrutiating pain for about 3 weeks and was

scheduled to have surgery. Three days before the surgery, I broke out in

hives. They progressively got worse until I landed in the emergency room

with the first of many episodes of anaphylaxis.

Regarding prednisone and testing: When I first saw the doctors at UCLA, they

also put me on pred, partly so I could be tested, but mainly to control the

anaphylactic symptoms. They told me that testing can be done fairly

accurately while the patient is on pred, but there was more margin of error

than if the patient wasn't on any meds. They said the allergy test results

were more likely to show a false negative while on the pred - in others

words, showing you aren't allergic to something which you are allergic to.

Regarding gamma globulin treatment: Been there, done that. It was a waste of

time and money for me. The doctor who did it told me it was a long shot, but

he still felt it worth a try. He also said if there were going to be any

results, we would see them during the first treatment. If anything, it made

my hives WORSE. Also, because this is a blood product, it carries the same

(albeit slight) inherit risk of transmitting disease as any blood treatment,

like a blood transfusion. We're talking hepatitis, AIDS, that kind of stuff.

After the treatment, my doctor checked me for such diseases at monthly

intervals for about 3 months.

Regarding work missed: I’ve always been more the “freelance” type. I

currently do eBay auctions, so whenever I feel too lousy to work, I don’t. I

find, though, that working with my hands and concentrating on something

besides the itch helps get me through some rough times. Before eBay, I

trained animals part time for the film industry with my husband. I worked on

“Homeward Bound” (I did the cat work) and had to quit about 2/3 of the way

through because of my symptoms. It was a very rigorous job, and it was just

taking way too much out of me to continue. That’s the last big job I’ve

done. Since then I’ve only taken on short shoots – a week or less, mainly

commercials. As for a normal job, working for someone else, I wouldn’t even

seek such a job. I don’t feel that I can be depended on enough to take

something like that on. I would require too many sick days. It’s not fair to

any potential employer.

Sorry for the lengthiness, but I had some catching up to do! Hope you are

all as well as can be, not itching too much. Hang in there!

Air hugs,

Jackie

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