Another bout. It's finally gone but hurt like hell.
Saturday, November 17, 2012
Sunday, August 5, 2012
Tuesday, July 31, 2012
Facebook shuts down a PRIVATE medical support group for people with a rare, painful, disfiguring disease called Hidradenitis Suppurativa with no explanation and no way to discuss the issue.
http://www.facebook.com/
http://www.facebook.com/
Thursday, June 7, 2012
http://www.empowher.com/skin-hair-amp-nails/content/living-hidradenitis-suppurativa
An excellent article about people who live with HS. Please read it and share it.
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An excellent article about people who live with HS. Please read it and share it.
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Tuesday, April 17, 2012
Life and it's tendency to bite
Sorry I haven't been around much everyone but I have been helping my father deal with the fact that my mother is severely ill and hospitalized. We have been spending everyday for the last few weeks at the hospital. Even on days where I have extreme flares and cannot walk very well I am there. Heck what better place to be when you are in pain than in a hospital.
Anyways my HS has been loving the stress I am under and has been biting extremely hard. Daily I am flared somewhere. Often I am flared in multiple places at once. I am on no current treatment for HS. I've tried them all except surgery. My derm agrees with me that surgery is a temporary fix at best and that I could end up worse than I am now which is often the case. the only other option open to me is remicade which I cannot afford. Since hubby has changed jobs twice in the last few months we currently have no medical coverage yet even if I did I could not afford the copay for remicade. besides the derm has told me straight out that once I start taking it I will be on it for life since others who have been on the treatment have had their HS come back with a vengeance when they were completed.
So at least I have some pain relief. I can no longer take pain killers by mouth as my stomach rejects them and I promptly throw them back up. I did find out that my being so very careful with the oxys and taking them only when the pain was very bad was a good thing. I had not developed an addiction like so many others have and was able to discontinue them without any withdrawals or side effects. I have however been placed on a pain patch so all those years of avoiding addiction were all for naught. I guess my body is now physically addicted to the pain patch. This is a place I never ever wanted to be, I fought so hard to avoid, yet in the end HS has the last laugh as I have become the one thing I dreaded most in this world, an addict. My doctor has promised that should a viable treatment be made available in the future he will help me slowly withdrawal from this pain med and ease me off of it but it won't be easy. I'm just terrified that a working treatment will never be found for HS.
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Anyways my HS has been loving the stress I am under and has been biting extremely hard. Daily I am flared somewhere. Often I am flared in multiple places at once. I am on no current treatment for HS. I've tried them all except surgery. My derm agrees with me that surgery is a temporary fix at best and that I could end up worse than I am now which is often the case. the only other option open to me is remicade which I cannot afford. Since hubby has changed jobs twice in the last few months we currently have no medical coverage yet even if I did I could not afford the copay for remicade. besides the derm has told me straight out that once I start taking it I will be on it for life since others who have been on the treatment have had their HS come back with a vengeance when they were completed.
So at least I have some pain relief. I can no longer take pain killers by mouth as my stomach rejects them and I promptly throw them back up. I did find out that my being so very careful with the oxys and taking them only when the pain was very bad was a good thing. I had not developed an addiction like so many others have and was able to discontinue them without any withdrawals or side effects. I have however been placed on a pain patch so all those years of avoiding addiction were all for naught. I guess my body is now physically addicted to the pain patch. This is a place I never ever wanted to be, I fought so hard to avoid, yet in the end HS has the last laugh as I have become the one thing I dreaded most in this world, an addict. My doctor has promised that should a viable treatment be made available in the future he will help me slowly withdrawal from this pain med and ease me off of it but it won't be easy. I'm just terrified that a working treatment will never be found for HS.
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Friday, February 3, 2012
Bloggers
There are a lot of us out there that blog about our lives with HS. I've come across another person who's writing style is excellent. The blog is definitely worth a read. If anyone else has a blog they wish to share please let me know and I'll post a link here for you.
Not-Dying with Hidradenitis Suppurativa http://notdying.wordpress.com/
Well back to it. So much to do and so little mobility to do it with. *sigh*
Not-Dying with Hidradenitis Suppurativa http://notdying.wordpress.com/
Well back to it. So much to do and so little mobility to do it with. *sigh*
Sunday, January 15, 2012
Bandages
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Ideas to lower wound care costs: Tapeless, washable, reusable bandages. Initial cost is a bit but not too bad. Since these can be reused over and over they may be an excellent idea. They are a covering only and not meant to go right over the wound but simply to hold the dressing in place.
The second link is about making and sterilizing your own reusable cotton or linen bandages. They just tear but I would be tempted to sew a neat edge. Anyways These are interesting links. Enjoy
http://www.tapelessmedical.com/
http://www.antlife.org/homemade-sterile-cloth-bandages/
Also a video on making crochet cotton bandages.
http://www.youtube.com/watch?v=qeNfV7_8JmI
Ah I found an actual written pattern for the crochet bandages. They call them leprosy bandages. Anyways the instructions are lower down the page here:
http://www.bevscountrycottage.com/bandages.html
Also if you will be making bandages, once you have made enough for yourself consider making a few more to donate to this worthy cause.
http://www.leprosybandages.blogspot.com/
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Ideas to lower wound care costs: Tapeless, washable, reusable bandages. Initial cost is a bit but not too bad. Since these can be reused over and over they may be an excellent idea. They are a covering only and not meant to go right over the wound but simply to hold the dressing in place.
The second link is about making and sterilizing your own reusable cotton or linen bandages. They just tear but I would be tempted to sew a neat edge. Anyways These are interesting links. Enjoy
http://www.tapelessmedical.com/
http://www.antlife.org/homemade-sterile-cloth-bandages/
Also a video on making crochet cotton bandages.
http://www.youtube.com/watch?v=qeNfV7_8JmI
Ah I found an actual written pattern for the crochet bandages. They call them leprosy bandages. Anyways the instructions are lower down the page here:
http://www.bevscountrycottage.com/bandages.html
Also if you will be making bandages, once you have made enough for yourself consider making a few more to donate to this worthy cause.
http://www.leprosybandages.blogspot.com/
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