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Feeling Bad

Katie618

By Katie618
in Dermatitis Herpetiformis

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Katie618 Apprentice
Katie618
Posted

i think i just need to vent, and maybe get advice on what to to do...

I have DH and have in various spots (ankles,knees, feet, hands, elbows, face) and wish i could conceal it better. i'm already self conscious about it (esp when it flares) i grew up with ezcema and got used to ppl asking questions- but it would clear up and no one would notice or know... but i feel as i have gotten older appearance means a lot more than it did being a kid. I usually look like a raccoon- the skin around my eyes get red, raw, swollen, my upper lip is red, my hands usually look a mess. I hate when ppl ask if I had an outbreak, ate something i wasn't supposed to, i try to wear long sleeves. it makes me feel sick.

i was talking to my boyfriend the other night and it came up, and i asked if it bothered him- he said he never noticed it before we started dating, but the first night we hung out it caught him off guard (maybe it was a turn off, or a "what the heck is on her?!") and i asked what about now.. and his reply was "no, not really" i didnt know how to take it-if it bothers me, it must bother him. I know i hate it, i know i'm self conscious about it, and more so when it's worse and during an outbreak, and i feel bad when i go out with him and it's bad.. i geuss i'm still learning how to deal with it but i feel like this DH is permantly on display does anyone else feel like that-- is there any way to help it clear up (i have rx's to put on it, it takes away the red in a couple of days, but then it's super dry and flakey) i am on dapsone, i dont know if i should bring it up again cause this is me and how i'll always be... when i say i look bad, he says i dont, and that he never notices it ( i know he cares for me and accepts me and my celiac disease/DH-- he even cooks gluten-free for me!!)

thanks everyone, i think i needed to vent, somtimes the whole thing just gets to me!! i get so frustrated about always thinking about what i have to eat, etc, etc

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VegasCeliacBuckeye Collaborator
VegasCeliacBuckeye
Posted

I know how you feel Katie.

My girlfriend is "supportive" (she could be better about some things), but she says the DH doesn't bother her either. Sometimes I wonder if it does or not...maybe its just insecurity coming out. Either way, it bothers me too.

I wouldn't care so much, but sometimes it gets itchy at bed time and I hate waking her up when I can't sleep due to the "itching"...

CarlaB Enthusiast
CarlaB
Posted

Katie, I don't have DH, so I can't completely understand how you feel, but I wanted to mention that the fact that he's with you and you have it means that you mean more to him than your DH. Everyone has their visible flaws (except models since all theirs are "corrected" out of their magazine pictures), and though the boyfriend/spouse may not particularly like the flaw, they realize the flaw doesn't make the person.

My hubby had a carcinoma cut off his face years ago and the PLASTIC SURGEON we paid EXTRA for left a HUGE scar on his face. We neither one like the scar, but it doesn't affect how I feel about him at all. It bothers both of us, but in the end it just doesn't matter. He tells people he was in a knife fight ... then he waits for a reaction and adds ... with a doctor.

Ursa Major Collaborator
Ursa Major
Posted

Katie, when did you start the gluten-free diet? If you are very strict about it and really, really are careful to avoid being glutened, your DH should clear up eventually. For some people it only takes a few weeks (but will still get the occasional outbreak), for others it takes two years to completely clear up.

So, I don't think now that you are diagnosed, that you will have it always. There is light at the end of the tunnel.

In the meantime, just try living like it isn't there. There is nothing you can do about it, what others think is their problem, and if your boyfriend is still with you, that just means he accepts you for who you are, not for what you look like. Good for him.

tarnalberry Community Regular
tarnalberry
Posted

One thing that may help is to avoid iodine until it clears up, and if you ever get contaminated. Iodine is part of the IgA deposits under the skin that cause DH, and iodine in the diet (or in skin products) will exacerbate and prolong DH.

Katie618 Apprentice
Katie618
Posted
  • Author

i've been on the diet strict since the middle of june-- i follow the diet very strictly, but glutening seems inevitable-- i ocassionaly eat sushi ( i know that has iodine in it)

i dont really have blisters anymoe- my skin will just get red where i used to get blisters.

i know it time it will get better, it sometimes just sucks :P my boyfriend is definately supportive and it never seems to be a prob (unless i bring it up- saying i feel/look crappy today) he's always willing to help, cook, accomodate (i got lucky!)

thanks for all your support and comments-- i really appreciate it- it's nice to know that ppl here care, support groups have the "family" feel :)

Sophiekins Rookie
Sophiekins
Posted

Hi Katie. . .I know exactly how you feel. I've had DH since the age of 11 which is all over my arms and legs and has patches on my stomach and breasts, though thankfully not on my face. People can be genuinely insensitive, but many of them also don't realise that we are so incredibly conscious of it. Rock bottom for me was the day my mom and I went shopping for my senior prom dress. The first shop we went into, I found the PERFECT dress. . .my favorite colour, a beautiful fabric, a gorgeous style. . .and the sales clerk refused to let me try it on because she was sure I was going to "ooze" on it (and yes, she actually said that). Thinking about it still (seven years later!) makes me whimper. . . five months later they figured out what was wrong with me and I went gluten-free.

I have been gluten-free, corn and soy free for six years and six months - but never on Dapsone, 'cause I'm allergic to it - and sad to say it, I still have red patches. The good news, though, is that the red patches have cleared up beautifully in the last six months (I actually wore a bikini to the pool a few weeks ago and looking in the locker room mirror even I couldn't see the spots) since I moved into my own place and got my own kitchen and banned gluten from my home. My family are still adjusting to the no-kisses-until-2-hours-after-food, but it's worth it. The spots still get dry and flaky easily - I use a milk, honey and nut-oil lotion religiously after showers, as well as a hydrating nut-oil glycerine body wash; I use a milk and rice-protein face cream once a week and don't wear makeup because it was just too hard on my skin. Keeping my bodyhair really short also seems to help. I also try not to soap my body more than twice a week and I had to stop wearing makeup because it was just too hard on my skin. I also wash all of my sheets and clothing in ultra-gentle washing liquid.

Be brave and hang in there. . .(oh, and by the way. . .I finally found a better prom dress and had a fabulous time. . .there is crap in the world, therefore ass%$@#s must exist. . .)

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mtdawber Apprentice
mtdawber
Posted

I'm with you. I had what the doctors called "Eczema" and then dishydrotic (leaky, blistering) Eczema - that after all this time is actually DH.

I wear pants in the summer so people won't see it. My husband met me before it got bad. My "eczema" would flare up and go away in those days. Now I am a walking pustule or at least I feel like one and I sure don't want anyone to see me without the clothes....the last straw for me was last week the blisters migrated to my cheeks (I used to get flushed - now I have the damn things there too...how fair is that?)

The reality is that my husband loves me anyway. He's just glad I'm diagnosed and eventually I'll feel and look better. That should help me feel better about myself as well.

Your boyfriend wouldn't be there doing all the things he does if he didn't want to be.. He cares... The inside and who you are is more important.

Hang in there - it will get better.

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