[HS] Clothing Difficulties

[asterroc]

For those of you who aren't already familiar with my skin condition, hidradenitis suppurativa (HS), you may wish to skim that link. framefolly, remember how I said the other day that you shouldn't post anything unlocked that you wouldn't get up in front of a room and tell your whole class? Well, my posts on HS are my exception to that rule, b/c I want to make the condition more well-known and remove the stigma from it. I *still* wouldn't stand up in front of a class and tell them about it, primarily b/c it's not relevant to the class, but I have talked about it with a couple individual students.

So, back to the reason for this post. I've got a cyst at the belt line. I haven't had one this big in months, that much is great, but getting one now isn't. It's probably *because* of pants that I have it in the first place - pants rub on your waist, but you don't ever notice it until you have a horrible painful bump right under that rubbing spot. How painful?

This painful:



Yeah, I've never shown pictures of it before, not sure what prompted me to do so now.

I cannot wear normal pants b/c the belt line falls right atop the cyst. I can't wear low-rise jeans b/c the very top edge of the waist rubs against the bottom of the cyst. I can't even wear normal sleep pants, despite how soft they are. What I'm wearing right now is these cotton super thin sleep pants without elastic that are basically the scrubs you wear as a hospitial patient. I tie them very loose so they're nearly falling off my hips and then they're below the cyst enough that it only irritates a little. Yes, that's my pink undies you see right below the cyst, bikini style, that's how low I have to wear these sleep pants. And I'm currently wearing a sweatshirt without any elastic at the bottom, because again the elastic would rub on it. Even so, moving around too much hurts because your skin always flexes. (Never noticed that before, did you?)

So what do I wear to work? I had to dress nice today for a luncheon, so I found a long sleeve slightly formless dress (c/o the last chorus I was in), in black velvet(een?). Since it was black, I spruced it up with red and green so it wouldn't look like I was going to a funeral - it's appropriate for a NYC wedding instead. ;)

See?



I usually put photos of me behind friendslocks too, but I didn't want to break my rule of having HS posts open, so I didn't here. Besides, I got a haircut recently and wanted to show it off. ;)

Tomorrow if it's clear I'm going to have to stay out late with a class doing an extra-credit observing session, so a dress is out. I'm debating wearing a dress during the day and changing into overalls, or just wearing overalls. I'm probably going to go with the overalls just b/c changing's ridiculous. I don't like dressing that sloppy, but I think it's warranted - overalls are also warmer than normal pants. Ooh, I can wear the ones Mom made me, out of really nice white tapestry material. If I already sewed the button back on, hm, maybe not. :-\

I hate my skin. Back to soaking it.

Comments

[gemini6ice.livejournal.com]

Perhaps too-loose pants held up by suspenders?

Or maybe you can cover the cyst with a makeshift cup (as in the jockwear), so that the pressure from a waistline will go onto the surface and be distributed to where the cup makes contact. A small piece of gladware may do the trick. And if you put air holes in it, you won't be blocking the air circulation to your pores.

[zandperl.livejournal.com]

Ugh. Good thinking, but I htink I'll just go with overalls. I'm not being observed or anything today so I'll live with it.

[hrafn.livejournal.com]

Ye gods. Painful, chronic, AND the clever medical people don't know how to treat it - those are always the most fun.

[zandperl.livejournal.com]

Fun for the whole family - as I role over in bed and it touches the sheets and I yell out and T$ comes running from the next room to find out what happened. :(

[demigoth.livejournal.com]

Yeeeowch! :(

In the dress picture, you totally look like a teacher, one of the cool ones even. :)

[zandperl.livejournal.com]

Hee, thanks! Everyone today was commenting on my haircut (drew attention away from today's overalls). Actually, they were saying that I colored my hair darker, while in reality what happened was I cut off the parts that I had bleached and then dyed (human) red during the summer. After some inhuman colors like orange.

[hitchhiker.livejournal.com]

ouch, that looks really painful. and in a very inconvenient spot indeed.

[zandperl.livejournal.com]

They're never in good spots. HS has also historically been called acne inversa - "acne" of the "inverse areas." It's not acne (it's worse than that: acne is simple bacterial colonizations, while HS is clogged apocrine sweat glands that are colonized with bacteria and sometimes have horrendous inflammation), but it does tend to affect the inverse areas b/c the apocrine sweat glands tend to be in those areas. Like the armpits (the pressure there never goes away) and on the chest (which is already subjected to the torture device known as the bra). Thankfully I don't tend to get them in the groin area like many HS sufferers do.

I think I'm going to have to get an appointment with my dermatologist. :( Pain in the ass. Or the beltline.

[framefolly.livejournal.com]

Ow! That cyst *looks* *incredibly* painful, and I wish you didn't have to suffer it...

*hugs you carefully*

I applaud your private/public policies, and have adopted them for my own blog. It's taking me a long time to catch up (last week...plus? was spent sleeping), but...one step at a time :) .

And -- fab haircut :) .

[zandperl.livejournal.com]

It's getting better, though slowly. I'm still standing up and sitting down gingerly, but I can wear normal pants again.

Man, I need a week of sleep. I'm jealous.

[framefolly.livejournal.com]

It's not actually quality sleep -- depression sleep, for me, is very much like fever sleep -- I wake up like I just did something extremely boring and exhausting, eat a bowl of something, then am way too tired to do anything but go back to bed and fall into a restless stupor again....

But hope you'll have some sleep coming your way this weekend!

[zandperl.livejournal.com]

Ah, sorry to hear. I didn't get much sleep last night b/c of T$'s snoring. And he didn't get much either b/c I kept elbowing him to try and get him to stop! :-P Unfortunately, a few years back my parents got a cat, and I'm allergic to all furry things, so I sometimes have lots of allergy problems when I visit. I'm hoping that's not the case this time. I'm hoping I remember to bring the bag I packed...