Hidradenitis suppurativa or HS

**Jenshiye** · Feb 27th, 2008, 15:38:05

Originally Posted by Rewo

****** is the offending PM'er. ...

Now if you give them a taste of their own medicine you will get banned too.

**Xaun** · Feb 28th, 2008, 21:05:28

I am back from my lil vacation

and thank you all for the support as I was able to read the forums still while logged out at least so got your messages the whole time

<3

**Spart** · Feb 28th, 2008, 21:26:20

welcome back

**Ciggie** · Feb 29th, 2008, 07:00:19

Originally Posted by Xaun

I am back from...

Ban gone? yay great :d welcome back Xaun

**Jenshiye** · Feb 29th, 2008, 08:22:32

Welcome back.

**Tondrin** · Mar 1st, 2008, 09:16:07

welcome back, my dinosaur of a comp finally went splat so i'm now trolling on a psp atm, but just to let ya know i'm praying to whoever's listening for ya xuanie

**Xaun** · Mar 7th, 2008, 01:33:51

Originally Posted by Adamentium

I'm the miracle doctor that internet diagnosed Xaun. True fact. (I have the same disease, coincidently telling her about mine, she figured out it's what she had. I really just wanted credit for being a miracle internet witch-doctor shaman, sorry for hijack 8) )

This is totally true btw.. since I have been diagnosed by a real doctor who I had to basically tell what I had and them have them go look it up.. then got to a specialist for it.. go figure

<3 to Adam for helping me! Only reason I didn't post "Thanks to Adam" right away is I didn't know his feelings on everyone knowing what he is going through sucks like holy hell.. because everyone has their own opinion and he don't want your sympathy

but seriously I know what he is going through and its pure ****ing hell on earth.

**Tondrin** · Mar 7th, 2008, 01:37:47

Originally Posted by Xaun

This is totally true btw.. since I have been diagnosed by a real doctor who I had to basically tell what I had and them have them go look it up.. then got to a specialist for it.. go figure

<3 to Adam for helping me! Only reason I didn't post "Thanks to Adam" right away is I didn't know his feelings on everyone knowing what he is going through sucks like holy hell.. because everyone has their own opinion and he don't want your sympathy

but seriously I know what he is going through and its pure ****ing hell on earth.

wow i just found a new respect for adam, how you holding up?

**Jenshiye** · Mar 7th, 2008, 05:47:49

Originally Posted by TondrinOo

wow i just found a new respect for adam, how you holding up?

I am a bit blown away, WoW troll saves AO princess...

*cough* Thanks Adam *cough*

What course of treatment are they going to use and how will it relieve, slow, stop the disease or restore you?

**Tondrin** · Mar 7th, 2008, 07:03:44

Originally Posted by Jenshai

I am a bit blown away, WoW troll saves AO princess...

*cough* Thanks Adam *cough*

What course of treatment are they going to use and how will it relieve, slow, stop the disease or restore you?

good question , i'm very interested to see what kinda alleviation they have for this

**Xaun** · Mar 7th, 2008, 08:35:24

Originally Posted by TondrinOo

good question , i'm very interested to see what kinda alleviation they have for this

Right now I am still looking at all the options.. the surgeries have a really low success rate and are ridiculously expensive

The problem is I am in stage three which means sinus tracts have formed and its pretty much able to spread as it wants.. I can thank the doctors who have been cutting me open as the treatment for the last 12 years for that because lancing makes it worse................. you don't want to know how many lancings I have had done

**Jenshiye** · Mar 7th, 2008, 08:44:05

Could you guilt any of those doctors into helping pro-bona or helping fund it?

America is very litigious so they should get the hint and not want the stress.

**Xaun** · Mar 11th, 2008, 13:26:17

After an appointment and evaluation by another specialist today they said conclusively that this is what I have. And confirmed my fears. I am too far for treatment and not far enough for surgery so disability is my only option. So I began the search.

http://www.ssa.gov/disability/profes...%20suppurativa

Thank god I am covered! I am starting the application process now.

{Edit: It's not much but it's something}

**Jenshiye** · Mar 11th, 2008, 14:17:53

*hugs*

**Omutb** · Mar 11th, 2008, 15:12:54

Originally Posted by Xaun

Thank god I am covered! I am starting the application process now.

{Edit: It's not much but it's something}

Something is always better than nothing.

**If6was9** · Mar 11th, 2008, 17:34:42

Originally Posted by Psyloche

...
In my mother's case the illness is not even diagnosed yet, we know its some sort of body metabolism failure(thyroxine related), since its gone from 150% normal thyroxine 10 years ago to low now, we do know someone among our relatives set out rumor's who caused her to not recieving medical attention(she was supposedly poisoning herself with bladderwreck to loose veight), so all our family relations when straight into the toilet, though im happy not seeing my uncles and grandparents much, for some reason so is my parents(my extended family is sort of dominated by shallow, short sighted ppl, who look more on exterior and apperance than other humans, some im so tired off id be happy to never see them)...

Someone close to me had a similar issue. She found a good doctor for it in the Washington DC area. PM me if his name might help.

Xaun I can no longer remember everyone I've pissed off or who's pissed me off - and I suspect we've managed to do both - but you have my RL sympathies. At least knowing what ails you is a start.

**Alternity** · Mar 11th, 2008, 18:11:50

Makes me sad to hear of your illness Xaun, I'll cross my fingers and hope there will be a cure down the road for you.

**Xaun** · Mar 11th, 2008, 21:23:07

Originally Posted by Jenshai

*hugs*

*hugs back* need lots of those xD

Originally Posted by Omutb

Something is always better than nothing.

QFT! The bonus I found out is I will qualify for Medicare too! That is like.. music to my ears because that makes the coverage payments that I qualify for seem alot more when that type of stuff is not being deducted from it. It at least gives me some hope that's for sure

Originally Posted by If6Was9

Someone close to me had a similar issue. She found a good doctor for it in the Washington DC area. PM me if his name might help.

Xaun I can no longer remember everyone I've pissed off or who's pissed me off - and I suspect we've managed to do both - but you have my RL sympathies. At least knowing what ails you is a start.

Internet's serious bizniz yo!

J/k I don't take anything said in the forums personally or to heart "within reason" not mentioning anything.. I absolutely love a good bout of PVP be it in game or in the Forums

So no worries and thanks for the positive vibes! ^_^

Originally Posted by Alternity

Makes me sad to hear of your illness Xaun, I'll cross my fingers and hope there will be a cure down the road for you.

Thank you hun. Right now I am looking hopefully toward the new types of germ / bacterial medical applications such as using e-colli to kill cancer etc. Maybe with some type of "Programmed germ" or "Nanobot" or "Stem cell" tech will make what I have a curable thing of the past. One can dream right?

**Jenshiye** · Mar 12th, 2008, 08:15:36

Originally Posted by Xaun

... One can dream right?

For what are we without them?

**Spart** · Mar 12th, 2008, 11:22:00

Originally Posted by Xaun

I am too far for treatment and not far enough for surgery so disability is my only option. So I began the search.

*hugs* Here's hoping the best possible situation can turn out for you Xaun

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