Author Topic: HS. Embarressed & scared  (Read 193774 times)

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Gobe

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Re:HS. Embarressed & scared
« Reply #100 on: Wednesday September 08, 2004, 12:10:10 PM »
I am so happy for you Jess!   :peck:

Offline Fortuna

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Re:HS. Embarressed & scared
« Reply #101 on: Wednesday September 08, 2004, 03:11:32 PM »
Thanks, guys, I just love being able to speak to you guys, and tell you what's up without feeling weird, you know?
CP, I really respect you, you are soooo knowledgable about this and I take everything you say as gold.  :nod:
Bev,  :peck:.

TF, Gobe, and Maggie,  :hug:

"Try anything once, come hot, come cold.  If we're not foolish young, we're foolish old."
Canterbury Tales, Geoffrey Chaucer
"It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience." - Gaius Julius Caesar
Luceo Non Uro "I shine not burn

Celery Peach

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Re:HS. Embarressed & scared
« Reply #102 on: Wednesday September 08, 2004, 03:28:54 PM »
 :D aww Jess  :-[ You know, I am just a gobshite bossy boots really, I just got a head start on you with the info !  ;)  :lol:

What a lovely thing to say, thank you Jess  :-*

Offline Fortuna

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Re:HS. Embarressed & scared
« Reply #103 on: Wednesday September 08, 2004, 03:33:59 PM »
 :bighug:
"Try anything once, come hot, come cold.  If we're not foolish young, we're foolish old."
Canterbury Tales, Geoffrey Chaucer
"It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience." - Gaius Julius Caesar
Luceo Non Uro "I shine not burn

Gobe

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Re:HS. Embarressed & scared
« Reply #104 on: Wednesday September 08, 2004, 06:26:14 PM »
 :hugs: Jess!

Offline Bev

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Re:HS. Embarressed & scared
« Reply #105 on: Wednesday September 08, 2004, 06:40:23 PM »
 :hug:Aw Jess your such a sweetie :peck:
Love and Cuddles Bev 

Offline Bev

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Re:HS. Embarressed & scared
« Reply #106 on: Friday September 10, 2004, 07:11:58 AM »
Just wondering how everyone is doing? I still have nothing new to report ;D Can't belive it ???
Love and Cuddles Bev 

Celery Peach

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Re:HS. Embarressed & scared
« Reply #107 on: Friday September 10, 2004, 07:13:29 AM »
 :'( not too good here today, I've not given up on them yet tho Bev  :hugs:

Offline Bev

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Re:HS. Embarressed & scared
« Reply #108 on: Friday September 10, 2004, 07:20:33 AM »
Aw CP  :peck: I have just read your post to Hvns :( >:( I really thought things were going good for you :hug:
like I said in Hvns post......I hope they fill and drain quickly and with the least amount of pain :peck:
Love and Cuddles Bev 

Offline Hvns

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Re:HS. Embarressed & scared
« Reply #109 on: Friday September 10, 2004, 07:31:14 AM »
Hey Sis am truely sorry they are being buggers again, just responded to you over on my thread, but wanted to put it here as well. Maybe one day researchers can find a cure for us.

 :bighug:

Hvns






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Celery Peach

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Re:HS. Embarressed & scared
« Reply #110 on: Friday September 10, 2004, 07:39:21 AM »
 :doh: I just dont know what to do with them  :( Both pits have open holes that just leak & leak. I managed 2 days without dressings where they stopped, they started again so I was using the honey to try and heal them. They did heal over each time, but as soon as I take the dressings off, off comes the top and out they pour. They are nice and clean after the honey, so no infection and no painful swelling from them, its just this raw skin pain. If I heal them they swell again....but I cant be having these dressings on forever. This pain IS preferable to the throbbing tho  ;)

Thanks for the sympathy guys, I dont mean to moan, just telling you what its doing......

big hugs for us all  :bighug:

Offline Bev

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Re:HS. Embarressed & scared
« Reply #111 on: Friday September 10, 2004, 07:48:24 AM »
You Moan away that's what were here for :peck: And anyway I asked so you weren't moaning :hug:
Hope things are better soon.......Try the Yogurt on them :-\
Love and Cuddles Bev 

Offline Fortuna

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Re:HS. Embarressed & scared
« Reply #112 on: Friday September 10, 2004, 02:34:49 PM »
Aww, Cp, that really stinks.
Hope they go away in short order, and you can do your little dance again.

 :-*
"Try anything once, come hot, come cold.  If we're not foolish young, we're foolish old."
Canterbury Tales, Geoffrey Chaucer
"It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience." - Gaius Julius Caesar
Luceo Non Uro "I shine not burn

Gobe

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Re:HS. Embarressed & scared
« Reply #113 on: Friday September 10, 2004, 04:30:13 PM »
I read the other thread as well and will send you more hugs here as well since you both are in need.

 :bearhug: :bearhug: for Hvns and CP

Offline scaly Sue.

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Re:HS. Embarressed & scared
« Reply #114 on: Friday September 10, 2004, 10:44:41 PM »
I read the other thread as well and will send you more hugs here as well since you both are in need.

 :bearhug: :bearhug: for Hvns and CP


 yep me too.! :bearhug: :bearhug:
Just when I think I have got it right somebody moves the damn goalposts.!

Celery Peach

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Re:HS. Embarressed & scared
« Reply #115 on: Saturday September 11, 2004, 07:50:34 AM »
 :bighug: Sue & Gobe

I'm sorry, it just feels that I am always winging on. I'm up and down like a flippin yoyo. But most of all I'm just  frustrated  >:( I'm just so sick & tired of it all. You think somethings helping, then bam, back to square one.

I've spent a lot of time of the last few days researching and printing for the Derm. Half the articles I find even get the facts wrong. I feel like the medical proffessionals have failed us. How can they get away with it, do we not matter ? I dunno, maybe I am just feeling tense because of the Derm appointment on Monday, after the last visit didnt go too well.

Its just fight fight fight all the way. Fight the pain, fight the HS, fight the Derms with their crackpot treatments. Fight for awareness but no-ones listening.

I come here and I read that my friends are in pain and feel so useless  :'( What can I say to my friends, when I just feel so hopeless. Yes HS sucks, you better get used to it, cos it doesnt get any better and no one wants to help us ?

What exactly are the Derms getting paid for? last time the Derm said 'you probably know more about it than me' with a chuckle. Its his job to know, if he has HS patients on his books then he should be researching treatments and learning about it surely ? If I can find all this info as a non proffessional then why cant they ? In fact theres so many medical documents I cant read because I am not in the proffession, I need a MAD password, yet info is just sitting there untouched by them. AS for our friends overseas, actually paying for the service ?  >:(

Yet I feel there are so many others out there suffering in silence, too embaressed to come forward or fobbed off by their doc as being 'prone to boils'. If only the media would help, but I'v tried all that too, banging my head against a wall, probably cos its just too disgusting for daytime telly.

Sorry guys, its the same old rant from me. I'm going round & round in circles here. Some day I just feel like I'm going nuts.

Offline dippitmaggie

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Re:HS. Embarressed & scared
« Reply #116 on: Saturday September 11, 2004, 08:46:20 AM »
Keep on going and keep fighting hope all goes well on Monday
reading and sewing keeps me sane

Gobe

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Re:HS. Embarressed & scared
« Reply #117 on: Saturday September 11, 2004, 03:27:21 PM »
Aww Celery sorry to hear you are feeling a bit down and frustrated today.  But please don't lose sight of the fact that what you do does make a difference. Think of how many other HS sufferers you have helped here with your HS articles, information and your happy, chirpy posting style.  It may feel like you are on a one woman crusade but don't forget you have a whole army of followers behind you - all us lot!

 :peck: :hugs: :peck: :hugs:
« Last Edit: Saturday September 11, 2004, 03:28:10 PM by Gobe »

Offline Bev

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Re:HS. Embarressed & scared
« Reply #118 on: Saturday September 11, 2004, 05:50:23 PM »
CP Sorry you are down in the dumps :peck:and having a bad time with the HS >:(
Hope you feel better soon :hug:
Love and Cuddles Bev 

Celery Peach

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Re:HS. Embarressed & scared
« Reply #119 on: Sunday September 12, 2004, 08:11:33 AM »
 :hugs: thank you Maggie, Gobe & Sue  :-[ Sorry for having a tantrum.

Had a good chat with Nick yesterday and got this research in order. He's gonna come in with me and keep me in check, he really couldnt believe his ears last time. I do realize that when I start blubbing it doesnt help. Hopefully, with all this paperwork, I will have an answer for them on the things they were scoffing at  :)

I'm still wanting the Rad treatment and we are convinced that its a 'money' issue. I have documents here from UK as well as other countries stating that Radiation should be considered. I want some proper answers from the RO. He admitted he knew nothing about HS, why should I lose out because of his ignorance. The research is out there. They were doing it in UK for HS in the 60/70's. His other reasons were the Cancer risk, if indeed there is one, where are all the people dying from it now ? I cant find any research to suggest they are ? The thing is, they are quick to recognize the cancer risk from Rads but they will not acknowledge that I have a 50% increased risk from non-melonoma cancer just having HS turning my flesh to mush.

On the other hand, if there is evidence of cancer from Rads, surely it is my decision. I dont live my life on 'what ifs...'. This may sound dramatic, but I want some life now, whats the use of living to a ripe old age if your housebound.

Germany do it all the time, I have documents here that state they do at least 250 cases a year, that they acknowledge that there are 'geographical differences' in treatments, using Rad for benign diseases does put extra costs on their Rad departments.

Then theres this surgery lark, trying to bully me into it, with a 'well, if you wont be helped' attitude. I know I go on & on about it, but PLEASE !!!! 50% are not good odds. I'm not sure that letting this idiot loose with a scalpel when he knows so little about HS is a good idea anyway, no matter what the odds. On his own admition he never cured anyone doing it  ::) So why is he so hell bent on carving me up ?

I guess I'm a little nervous also, I have found a dodgy mole on my inner thigh. Its turned black and ragged at the edges, I'm trying not to worry about it. Not that I think its anything serious but a bit nervous about them removing it, its in an awkward spot.

Sorry for ranting on again, you know it helps me just to get it off my chest. What my Nick has to put up with  ::) I'll be glad when its all over for another 4 months.....

...if all else fails Nick can hold him while I punch him  :roll: