Monday, July 14, 2003

12 days. Yikes. I am a bad blogger.
So, I went to the Doc on the 9th. Three doctors looked at me and all disagreed. One was quiet, the other said operate, the third offered a rediagnosis of "furunculosis." I can't believe they listened to her. Well, now I'm on clindamycin and its anti inflammatory properties may be helping. They swabbed me for staph, and I'll have the results of that soon enough.
Actually, I'm going to call on it now....
Curses! "They'll call me back." Yeah, right.
Ok, so that's about all right now, except that the doc visit made me bawl for a couple of hours. It sucked.

Wednesday, July 02, 2003

I've been a bit negligent this week... but I'm back.

Emote: I've been wallowing in depression for a few days. That sentence looks so small but has been a huge black cloud over my head.

How it looks: like hell. Abs infection has stripped the hide off me. I'm peeling like crazy and raw, and new sores keep popping up

Treatment: diflucan, more ABS, new stuff: diaper rash ointment (how dignified), Retin-A when I can stand it.

Recent Rating: 4. Don't wanna talk about it.

Other news: guy who called me sasquatch got fired. :)

Thursday, June 26, 2003

Business first: If you keep calling, they will eventually put you in to a nurse. I now have an appointment for July 9.

Emote: I'm getting scared about what they'll do to me once they see it all. I've been told to take pictures of flares, which is physically difficult considering their location and emotionally challenging.

How it looks: about the same. There are a few new spots, but it seems that my axilla are calming.

Treatment: Back on cephalexin... still sticking with RA every other day.

Today's rating: 7, sister in law came by and visited :). Got stiffed at the diner :( Wrote a letter to the local editor shaming the public figure who stiffed me :).

Monday, June 23, 2003

Emote: Bad couple of days. I feel very ugly. I cried when I got out of the shower and looked in the mirror, and I cried harder when someone called me a stupid f*cking sasquatch today. God, where has my tough shell gone? Another doc appt. tomorrow. I'm scared she'll cut again.

How it looks: More peeling and drying, serious relapse today. It is now on my breasts and stomach and flaming under both arms. I am due to start any time now. Coincidence?

Treatment: 2 cephalexin left, laying off the RA due to broken skin on legs.

Today's rating (scale of 1-10): 3, due to two crying sessions. Good things were breakfast in bed, my favorite show on the radio, and decent tips at work.

Saturday, June 21, 2003

Emote: Decided not to have children this week. Husband got me a kitten. Somehow that was a good thing. Hey, at least I'm getting to take lots of pictures of the new furball, so hobbying is still functional.
How it looks: Peeling, lots of peeling. I can't walk too well and want to throw away the RA, except there's this kitten in my lap.
Business: Got bumped up to July 23 @ UAMS. Note to self: keep calling hospital and maybe I'll get in before the end of time.
Too tired to write much more.

Tuesday, June 17, 2003

Warning: this is a health related blog and may have graphic descriptions of health issues.

I am a 23 year old Biology Student of Native American descent. I am a very happy person, but I have a very serious disease. Recently I was diagnosed with HS, an incurable skin disease. I have had it for 11 years. I was misdiagnosed and shamed for all that time. I thought I was a leper. Now I am finally getting help and getting a little self respect back.
I started this to keep track of my progress in treating the disease hidradenitis. Within a few days I decided to let other people in on it. Here are the first few entries:

Week 1 of treatment:
Eleven years with this has left a lot of scarring, physical and emotional. I look in the mirror and wince. This is ugly: I can count several tracks where the disease has wiped out whole sections of skin, 4 on the mons look like stretch marks, one on my butt looks like worm tracks the size of my finger, one on my right leg panty line is so deep I can push it in with my finger and not feel anything solid. There are many large active lesions. Two are “blind,” no heads, mirror images on my inner thighs/lower buttocks that are about the size of small gumballs. They’ll need to be lanced. On my leg everything from 2 inches above my birthmark is the color of a black person’s skin. My armpits look bruised with dots marking the tops of old lesions and have more than three active ones on each. It runs all along my bra line under my arms. I present all sizes of these boils, blind cysts, blackheads, whiteheads, and double heads and spent over an hour pinching at them today. Three on my mons are not opening though they have heads. They will need to be lanced.
6/13 Treatment: Began dosage of antibiotics and generic Retin-A. Sat in tub of hot salt water. Showered twice, cleaning all affected areas with my hand.
Emotional log: Cried a lot today, felt very afraid of myself. I have felt way too many dark feelings lately to handle this alone any more. Called Mom and pitched a fit over cost of meds ($80). Called Kate and had her come over. “Came out” to Kate, Heather, and Dad. Kate and Dad were most uplifting. Kate offered to help me with logistics, and Dad jumped into researching the disease and laser surgery at UAMS. Mom told Scott what was happening and he ambushed me. I am not able to talk to him about this because I am still so very ashamed of it. I am afraid he thinks I am a hypochondriac. He did not seem willing to help, so I told him not to and headed to the shower. I wanted to show him what it looks like in the light, but I couldn’t. I may write him a note.
6/16 Treatment: continued regimen of ABS and R-A under arms. I’m getting a damned candida infection. Ate a diflucan. Today I was lanced for the first time. The doc hit me with a needle in about 12 places then lanced 6 without anesthetics. I’m a war painted betadine hamburger monster right now. Dad picked me up and took me home and spent an hour with me immediately afterwards. Kate came by to see me too, bearing chocolate and yogurt- she knows I don’t respond well to abs. I was able to do laundry and make a frozen dinner while taking “Chinese lady” steps from my knees down. I sat in a tub and it helped with the pain. I’m thinking of not using the RA every day cause I’m burning. After Scott got home, I fell asleep. He woke me at 9 to go to bed.
Emotional log: I still feel like hammered shit. I can’t go back to sleep and am sitting here most uncomfortably. I may take another hot bath and try again. I haven’t written Scott a note yet except kind of dumping on him. He doesn’t know about my surgery. I told Ben today. The girls at work are helping me out with time off cause the cutting was worse than I thought.
Business: Made an appointment with Jay Kincannon at UAMS for August 6.
6/17 Treatment: Sat in a tub of hot water, used alcohol to clean after using the toilet, used Retin-A again. Candida is getting hairy. Diflucan rocks but I wish it’d hurry up and work. It looks like some of the incisions did their job. My skin is almost even in most places. Where it didn’t take is worse though. RA is doing a number on eating through the biggest ones. They’re peeling and many have self-resolved. The dry scabbing on the ones that went by themselves is something I haven’t seen before. It was always halfassed drained and gooey. This looks like actual healing. I’m still having trouble with what looks like normal acne. It’s not exactly normal cause it’s in a sinus and won’t come out like a normal blackhead. Damn this sucks.
Emotional: Pook was awesome today. I told him I was aching from the surgery and kind of cried a bit. When he got home he was awfully sweet. I smoked pot today (one hit) to ease the aching. I feel bad about it but I don’t feel physically bad. He doesn’t want me up and around right now cause I whimper when I nail an incision.
Business: I sent Candace a note updating her and telling her that RA is not an off label treatment.

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