am i the only wuss?

I had a lot of problem with my job. Because HS is not something you can just show someone and half of the people don't know what it is, they don't understand the kind of pain you can be in. I had one on my butt and I could sit at all. I had to lay down or stand up not to put pressure on it. My boss asked why I couldn't come to work. He told me to get a pillow. I work at a juvenile. Hard to do that kind of work when it feels like someone is digging in your flesh with a hot poker!

its too bad that there's no cure. I would love to make more money than SSI. I feel bad that alot of people find it hard to get on it when they really need it. Must be harder to get on it in some states.

u know its interesting, my councelor said that my anxiety might be causing my sores.
I would think it be the other way around.
Maybe its both. Or maybe she didn't know about HS. I made a point last month to give her info about HS to help her understand it better, and me. She was very grateful for the information because she didn't know there wasn't a cure.
One thing I found helpful was learning that its not contagious. I didn't know that, so I was afraid of being in contact with people and not swimming. I still find it difficult to swim, just because the scarring looks bad, but at least I know I can, and not give an infection to someone.

Due to me have surgery every three to six months and being out of work for more than a month at a time. My doctor imformed me that this was something that I would have to put up with for the rest of my life, therefore he signed off for my disability. Your not a wuss, this si very serious condition in which takes alot away from us. We just have to fight to keep our heads up in hopes for a brighter day.

No you are not a wuss, I have been unable to work for 4 yrs due to 25 operations mainly in the groin and perianal area, just recently granted a blue disability badge for my car enabling me to park almost anywhere free of charge and in disabled bays, don't give up.

Scott.

ScottAnd:
that blue disability placard? i think thats what we call it, what did u mark on the application? i have to get my doctor to sign this application in order to get one but im not sure what to mark for disability. the only one i can think of is not being able to walk more than 100 yards. because the other choices were stuff like having walkers, and oxygen tanks, which doesn't fit me.
Or do u think that HS isn't worth getting one of those placards???

You're not a wuss! Sometimes it just hurts! I'm not on SSI, but I AM on unemployment right now, so I know what you mean about the money part.
I too have a placard that I use when I'm flaring up and can't walk well...
It's true that there is no cure, but you CAN pay attention to your body and start trying things to see what gives you relief and what doesn't... It's more than just medicine... For me personally, it's my diet, amount of exercise and my outlook/stress level. Sometimes it gets tiresome having to monitor everything, but then again, keeping up with it means fewer and less painful outbreaks, so it's worth it. My doctor (in the Seattle area) is very educated about HS, so I'm pretty fortunate. She keeps up with the studies in Europe as well as in the US and has helped me identify my "triggers" for outbreaks, which has given me back some control. Not entirely, mind you...but some. Maybe you could visit a nutritionist who can work with you regarding your diet as a first step. For me, giving up my beloved sugar and fried foods was sad, but when I started to lose some weight, lower my blood sugar AND lessen the outbreaks, it was totally worth it!
Please also remember that if any doctor tells you that "there is nothing you can do and you just have to live with it" is NOT the doctor for you. It took me a long time to grasp the idea that I could shop for a doctor just like shopping for a car....I just kept looking until I found one that worked for me as a person and not just another appointment.

Okay... I'll stop rambling.... hang in there and go get you a parking placard to have on those days when walking is painful.

knittyB:
thanks for your comment. i have thought about finding another doctor. im suppose to see a dermatologist in Olympia this July. If they don't help, then Ill just keep searching, maybe even Seattle if I have to. i had also thought of my medical paying for physical therapy and see if i can do some exercising.
in fact it probably wouldnt hurt both me and my guy. we just find it difficult and painful to exercise, but maybe physical therapy has an easier way for us to, like getting on their bikes or something.

Yeah... it helps...sometimes the sweating is not so fun due to the initial odor cloud if I have an active outbreak.

My Husband got me a WiiFit and an eliptical machine, so I could work out at home...plus we are the ulimate tourists...we walk all over the place on trips! (you think we would be thinner!) He also got me DDR2, but I slipped and ended up on my butt a few months after we go it and haven't been on it since! LOL I also just recently started Callenetics again and it's a butt kicker, but it REALLY does work fast! Just start your own stretching and bending type routine, to slowly get you used to moving around again. I am by no means fit, but I like to pretend from time to time! LOL

Good luck with the doctor search, keep the info I emailed you in your hip pocket just in case! Good luck to you and your sweetie!

Many people that have HS are on disability. And for good reason! Sometimes you just can't work around other people or outside the home. I can't. Too many days of not being able to walk or sit without extreme pain, so now I work out of the house. Best wishes and hang in there!
Di