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SoulCoffee
Posts: 7 Member
Hi people,
I am an HS (Hidradenitis Suppurativa) 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!
I am an HS (Hidradenitis Suppurativa) 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!
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Replies
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No. You are not a failure! Keep going. You are still here so that means God has plans for you in spite of this illness. Why some are afflicted will disease is so very hard to comprehend but take heart my friend something beautiful is made from these ashes. Also, what you go through now is something that you will be able to help others like you in the future. In some ways this manifestation seems autoimmune but of course I'm not a doctor.1
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I'm not aware of your disorder. There are so many disorders and syndromes that our grandparents didn't have in their generation! I believe what our generation is dealing with now, healthiest, is the direct result of consumption of processed foods, artificial sweeteners, and vegetable oils! These are in almost every food that we have been told is "good for us"!!
My hope is for anyone who suffers from the pain of any disorder to eliminate these substances (by cooking your own food) for just 30 days, and see how you feel. Especially if doctors scratch their heads in trying to treat you, and nothing has helped!
Best of luck, and welcome to the group!0
