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Still Itchy, Sad, But Hopeful

Di2011

By Di2011
in Dermatitis Herpetiformis

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Di2011 Enthusiast
Di2011
Posted

I don't need anyone to reply. Just need to get it out and not wake up in the morning with this hanging over me like it has the last few days.

I'm still itchy but been in touch with a family member tonight that hopefully will give some family history that will or will not explain half of the holes ((cancer)).

Tonight is the first time I have cried since I was in the doc's room in June with this strange (but seemed like it couldn't be anything but) DH and felt so incredibly alone and poor for so many months. Tonight I cried like I haven't in years. Actually some kind of release. I'm not usually a cry-er.

It finally dawned on my that years of annoying "grown-in hairs" is exactly what has happened for years. And the DH is just the escalation. And the other brain/neuro/Gi issues don't need listing.

I think that since being gluten-free for a while that I might actually be in a state to get out of it. Something to blame, months of recovery, years of mistery but maybe there is a good (emotional, social, physical) life out of it?!

I hadn't realised until today just how miserable I was because I know how much it will be.

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Hopeful1950 Explorer
Hopeful1950
Posted

When I read your post this morning I got a lump in my throat. "Still itchy, Sad, but Hopeful" I know where you are coming from. When I joined the forum I chose "Hopeful" as part of my forum name!

I used to tell my husband that I wanted to go somewhere and be put in a coma so I could sleep through the itch until they figured out what was wrong. I was weary. When I was at my lowest I visited this forum a lot (still do)and it really helped because I learned something new almost every day that put me one step closer to getting better.

I think the hardest part is that even after going Gluten-Free there is not really any instant gratification for most of us because it takes so long for this crummy stuff to go away. I hear that gut symptoms respond to Gluten-Free more quickly than DH. I only have DH, and it is improving, but slowly. Sometimes I have to look back to the days when I had to bandage, then wrap, my legs every day to realize how far I've come. I've even had days with no itching (a miracle for me)!

I think that the most important thing for me has been knowing that I am not the only one.

squirmingitch Veteran
squirmingitch
Posted

Amen & ditto.

itchy Rookie
itchy
Posted

It sounds like you are finding some relief diandliam. Right on.

I agree Hopeful1950. Looking back helps to put it in perspective. Ironically when I was really suffering the lesions were invisible beneath my clothing and few noticed. Now that the problem is less severe the lesions have appeared on my face and I get more sympathy and cooperation.

I am grateful for the internet. Without it many of us would remain undiagnosed (really self diagnosed) and without a solution. My sympathies lie most with people who have a debilitating unknown skin condition but really haven't found a solution in going gluten free.

As annoying as it has been to put up with this scourge, I became confident after the first few days of gluten-free living that it was eventually going to be gone.

Di2011 Enthusiast
Di2011
Posted
  • Author

It sounds like you are finding some relief diandliam. Right on.

I agree Hopeful1950. Looking back helps to put it in perspective. Ironically when I was really suffering the lesions were invisible beneath my clothing and few noticed. Now that the problem is less severe the lesions have appeared on my face and I get more sympathy and cooperation.

I am grateful for the internet. Without it many of us would remain undiagnosed (really self diagnosed) and without a solution. My sympathies lie most with people who have a debilitating unknown skin condition but really haven't found a solution in going gluten free.

As annoying as it has been to put up with this scourge, I became confident after the first few days of gluten-free living that it was eventually going to be gone.

Hindsight is truly a beautiful thing. And I am so so glad for having this medium to communicate. Without it I'm not sure where I'd be. gluten-free is the key so I'm lucky the key came to me so easily. Even after 6 months, lots of mistakes, a few breakdowns and still a bit itchy everyday I consider myself so lucky that it (gluten) is so obviously the poison. No drugs, treatments, ointments, etc etc . Just gluten free and it is good.

squirmingitch Veteran
squirmingitch
Posted

You said a mouthful there Diane! We could be looking at taking drugs for the rest of our lives.

"Just gluten free and it is good". Maybe we ought to get T Shirts with that phrase printed on them. It pretty much says it. :)

AVR1962 Collaborator
AVR1962
Posted

I so do understand. Those very words and very thoughts have been in my own head. A diagnosis really does change the way a person looks at life now and how they see their past. Good thing you have done is realized it, grieved and released and I can tell by your post you are planning to move fwd with a new life, once that you have not had before, this is awesome!! Best to you!

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