Hidradenitis suppurativa or HS

[Shareida]

God give me strength to hold to that resolve for as long as I naturally have a life to live.

What you need is a strong will, not an imaginary superior being.
Believe in yourself, your own strenght, not others.

[KarmaKamikaze]

What you need is a strong will, not an imaginary superior being.
Believe in yourself, your own strenght, not others.

This isn't a thread to debate the existance of God, this is a thread about an unfortunate diesase, lets not start trying to turn people away from their beliefs.

[Xaun]

What you need is a strong will, not an imaginary superior being.
Believe in yourself, your own strenght, not others.

This isn't a thread to debate the existance of God, this is a thread about an unfortunate diesase, lets not start trying to turn people away from their beliefs.

I was born a pastors child so Christianity is ingrained in me. I am an agnostic.. but in times like these.. you hold on to anything you can... if not for the fear of there potentially being a "Hell" I'd not be talking to you now...

[Spart]

but in times like these.. you hold on to anything you can....

How true.

[Xaun]

A little update:

I have been contacted by Mayo clinic in regards to my application and thankfully they have a pay as you go plan for people that are uninsured like myself. However, it is very expensive and I am not sure exactly if I am going to be able to afford this I have hope tho that something will pull through.

[Spart]

A little update:

I have been contacted by Mayo clinic in regards to my application and thankfully they have a pay as you go plan for people that are uninsured like myself. However, it is very expensive and I am not sure exactly if I am going to be able to afford this I have hope tho that something will pull through.

That's good to hear that they have some sort of plan to help you. I ofc, dont mind helping by donating if you need Xaun

[Psyloche]

Sad news, some of us have seen simmiliar issues, myself having grown up with a mother who have some kind of strange metabolic issue, and ive together with my father tried to do anything imaginable to fight, ive been used to try charging windmills now, disbelife from the ppl around, seeing my mother isolating herself, loosing all friends, one after another.

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).

Her condition is at least *stable*, just having no real life, barely having energy to wash clothes or do anything, walk a few hundred meters, a trip to the doctor would exhaust her a whole day.

I understand what you must have gone trough, Xaun, ive stood beside someone facing same type of problems with odd and unusual medical issues since i was in my early teens, used any oppurtunity to hunt for doctors, talk to them, persuade my mom to try go, seen her come sad, disapointed back, and go more years with pains, bad mental and physical condition(her mental faculties as memory and ability to reason logically has gone straight down as well as her strenght, stamina, and ability to function in most way).


When it come to relationships, have no worry, the day might come when you find someone
Many out there got experience enough to see the qualities in others despite some challenges.

[Tondrin]

As hokey as it may seem.. you can believe I have.. many times over the years before I knew this things name. The pain is not new only knowing where it is leading for me.

And to everyone else thank you again. I finally slept after a 30 hours stint of being totally incapable despite taking a half a xanax bar every 12 hours.. some days your mind just won't shut off. Since learning of this I guess I have been on some sort of endorphine high or something from the stress of it. The left side has healed this morning but the right side is about to burst but hasn't yet.. this translates out to radiating extreme pain.

I so wished this was something that was temporary or would go away and stop happening... Have you ever hurt so bad you contemplated cutting a part of your body off just because you figure it would hurt less? >.<

omg xuan.....why? i...really hope this works out, your the 2nd friend i know who's been struck with the RL nerfbat :/, her names clarissa but you probably can't guess who she is unless you have my myspace. anyways a few weeks ago bordering a month I learned something...we were in a relationship romantic of course. but she left me a month into the relationship and i couldnt figure out why, i kept asking and asking and trying to figure out why then oneday i get a message telling me that she really didnt want to talk to me anymore it seems i was one of only two she had said this two (happened to be the people closest to her) and later that day 12:54 am (or the next) to be exact i got a phone call she was in tears bawling her eyes out after a few "What's wrongs" and "calm down please..." she finally told me, she had cancer in her abdominal area the doctors thought it was stress related because of the way her last boyfriend had treated and left her, the second i learned this i found out it was malignant...and had taken 1 of her ovaries when i learned that i myself burst into tears, which while i'm not bragging is very hard to do. Right now i've been trying to help her as much as i can when she gets abdominal pains every few days i'm always the first to talk to her offering her help or to come over and try and take care of her...i've even worked out with my parents that if she gets hospitalized i'm taking a leave from school and having my work sent there. But there were plenty of support groups for her and such...and i hope xuan that someone can be there for you like i am right now for this girl.

sorry about the wall all

[Jenshiye]

Sad news, some of us have seen similiar issues, myself having grown up with ...

I will spare you the details but my family is a genetic mess and so far I have dodged most of the bullets. Which is another reason I will never have children.

Keep your chin up and don't hesitate to ask for help, I am sure you will do them all many a favour in the years to come and from what I see you are the sort whose presence is pleasure enough.

[sirmalak]

I will spare you the details but my family is a genetic mess and so far I have dodged most of the bullets. Which is another reason I will never have children.

Keep your chin up and don't hesitate to ask for help, I am sure you will do them all many a favour in the years to come and from what I see you are the sort whose presence is pleasure enough.

not to add awhole lot of humor to a non-humorous thread but...Jen why all the private tells about having my babies?!!?? was it a joke!!! OMG!!!! /emo

j/k


ontopic: Xaun, maybe it would help to get out and see the mountains or the beaches? I know that sounds like an oddball but when I get down in the dumps for along period of time it always helps to just pause and get away for awhile and contemplate whats going on.

[Psyloche]

Im hoping im helping, currently im only feeling helpless though, problem is, we who has seen the issues chronical patients face today, can never explain it, show it, make other understand, i really understand how horrible it must be for HS patients and their family/friends.

In my case, i atm know nothing of what tomorrow brings, i dont bury myself in mmoing due to RL though, i falls out of gaming, cant concentrate if someone got problems.

[PingBong]

so theres nobody to sue?

[sirmalak]

so theres nobody to sue?

/sings "money money money...moooooney!"

[Jenshiye]

not to add awhole lot of humor to a non-humorous thread but...Jen why all the private tells about having my babies?!!?? was it a joke!!! OMG!!!! /emo

j/k

I don't know who was impersonating me Malak but ... umm... if it ever did happen it would be with DNA screening and injection by a life parntner. So there is a complete 0 chance of your fantasy ever being a possibility.

ontopic: Xaun, maybe it would help to get out and see the mountains or the beaches? I know that sounds like an oddball but when I get down in the dumps for along period of time it always helps to just pause and get away for awhile and contemplate whats going on.

Yup, have to agree there, on a day to day, I love bathing, just lying there, soaking up the heat, being warm, slightly weightless. There are so many things that one can do, tracing a finger through water, painting, cycling, walking on the beach, lying on the lawn watching the clouds go over. That emptiness of mind when you have that distant look in your eyes and your mind relaxes, there is nothing better, especially when things are challenging and scary because it allows your mind to relax. Biologically the pressure come of the blood vessels, the adrenal glands stop producing hormones, you have a chance to flush out the toxins and clear your brain of harmful residues. Giving you the chance to think more clearly.

[Spart]

ontopic: Xaun, maybe it would help to get out and see the mountains or the beaches? I know that sounds like an oddball but when I get down in the dumps for along period of time it always helps to just pause and get away for awhile and contemplate whats going on.

Since Xaun asked me to post this on the forums for her, since she got banned :/

Beach = something lost, can't go its bad for me.. sunlight in general and heat causes inflamation, the mountains tho.. that sounds nice ^_^

[kinkygeo]

Why did Xaun get banned?!

I can feel her pain to a certain degree.I have a very acute form of asthma that kind of prevents me from doing most of the stuff i like and prevents me from living a healthy life (doing regular exercises and going full on at the gym)

I can also feel your pain as my mother during the last 5 years got diagnosed with terminal grade breast and ovaries(typo) cancer.She's had a few surgeries one of which even more destroyed her since the chief medic forgot a piece of tissue in her, which eventually got infected.Due to that she's slowly losing the blood flow to her arm and will require it to be amputated.I doubt she'll survive the psychological pain of losing an arm and also having to live with breast and ovarie(typo) cancer.

Is there any way people could gather money for Xauns treatment? I'd be glad to help.

Hope you're well (in the limits of what HS can permit you to be well) and all good thuoghts to you *hugs*

[Jenshiye]

Xaun got banned ... ?

*Runs summoning ARK to explain*

[Jenshiye]

... someone sent her a -very- cruel PM ...

I would like to hope that they are in more emotional or physical pain and has such issues that they lashed out at someone they knew was vulnerable.

Otherwise, I would like to hope that someone has passed on their IP address to some authorities, this person probably needs some descrete observation.

Can they not even imagine how terrible a condition like this must be? What level of insensitive cretin (just so we are clear on exactly what I mean by that) would go and do something like that?

I think those are the children that in the old days got lost in the woods but what really happened was that children were told they had lost their way, (which was true in a sense.) The little monster was caught doing something inhumanly cruel and considered possessed or something, then taken behind the wood pile and shot or taken into the woods and had their heads lopped off.

Edit:
(As I have said before, ARKs are too pedantic and inflexible. This should have had context considered and escalated to someone with compassion and the authority to bend a social guideline, which she was trying to correct in the process!)

So I am annoyed by two people here, aggressor (yes this is probably what you want, some negative re-enforcement and indirect attention) and the ARK that has failed to perform a duty which would be following rules to protect the community, in this case it has been used to persecute a victim!

[sirmalak]

I don't know who was impersonating me Malak but ... umm... if it ever did happen it would be with DNA screening and injection by a life parntner. So there is a complete 0 chance of your fantasy ever being a possibility.



Yup, have to agree there, on a day to day, I love bathing, just lying there, soaking up the heat, being warm, slightly weightless. There are so many things that one can do, tracing a finger through water, painting, cycling, walking on the beach, lying on the lawn watching the clouds go over. That emptiness of mind when you have that distant look in your eyes and your mind relaxes, there is nothing better, especially when things are challenging and scary because it allows your mind to relax. Biologically the pressure come of the blood vessels, the adrenal glands stop producing hormones, you have a chance to flush out the toxins and clear your brain of harmful residues. Giving you the chance to think more clearly.

Jen..you know I love you! im just kidding sheesh you think im seriously hitting on j00!? ...see what you did Jen now im depressed and have to use my own advice and goto the beach and let off some of this depression j/k hehe

Xaun gets an ebil msg..xaun complains about an ebil msg...xaun gets banned...ebil person who sent msg get banned?...curious

[Saetos]

So I am annoyed by two people here, aggressor (yes this is probably what you want, some negative re-enforcement and indirect attention) and the ARK that has failed to perform a duty which would be following rules to protect the community, in this case it has been used to persecute a victim!

Or could be a bent-up way to prevent further "harrassment" of the aggressor by not having an "existing" target...

I dunno.