New to the group :)

SoulCoffee
SoulCoffee Posts: 7 Member
edited November 13 in Social Groups
Hi people,

I am an HS sufferer. I've been dealing with HS for almost 10 years now. I am at stage 3 of the disease and it changed and affected my life negatively, big time!

I tried everything that was given to me. Been on Accutane twice, did not help. Been on methotrexrate(chemotherapy) and infliximab(remicade) for 8-9 months and it did not help at all, actually HS progressed and I developed cysts and abnormal growths on my *kitten* while on these!

I also been on Prednisone. This helped with the inflammation and pain for a while. However, it made me so depressed and I gained TON of weight while on it. I was on it for less than 10 months, but I went from 220 lbs to 400 lbs at that time! It was insane! That was 2 years ago.

Since then I've been struggling to lose the weight. The pain that accompanies any form of movement is so much to deal with. This makes walking or moving painful, let alone exercising. However, I've sucking it up and going for walks and doing exercises at home. Sometimes these end up with tremendous amount of pain and bleeding, but I just can't stand being weak and crippled by HS.

I have been put on morphine for a while so I can function. The daily pain I deal with required that. Imagine the pain of being kicked in the balls repeatedly. Now imagine that pain being the first thing you feel when you wake up in the morning. Now imagine that pain persisting throughout the day. Welcome to my life!

I had to drop everything in my life and go live with my parents a month ago. I had to drop graduate school, breakup with my girlfriend, and quit my job. I just could not function anymore. I could not even afford pain medications anymore.

That said, one thing I am proud of is that I finished my bachelor of science degree while on methotrexrate, infliximab, accutane, and prednisone. It was tough. But I did it! I had good grades as well, second class honours! So I guess this is something I can be proud of, at least. I am not a total failure because of HS. Am I?

I am hoping to find friendship and support from this group as I journey into losing weight and taking care of my health to hopefully attain a productive life someday!

Replies

  • bloodyannoying
    bloodyannoying Posts: 2 Member
    Such an awful disease, but somehow we cope. Well done for your achievements, it’s not easy xx
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