Sunday, June 12, 2011

This disease sucks

Ya I know it could be so much worse. At least I'm not dying but often I feel dead. There is so much in this life that I want to do. So much that I need to do but as it is I often just sit here in pain watching life pass me by. It really sucks. I've got to find someway to manage the pain. I've decided to go looking online to see if I can find information on meditation and pain management that uses the mind. At least I can't become addicted to that right? I need to learn how to go about my day to day life even when it hurts badly. You know I actually got a full nights sleep last night. Normally I wake up every time I move. It hurts and the pain wakes me up. It's impossible for me to sleep without moving. I get way to stiff. I guess it's a side effect of old age.

Hehehe ya I've faced the fact that I've getting old. More than half my expected life span is over now. I've never been afraid of growing old but I did expect it to be a lot different. I didn't expect a rare incurable disease that few people seem to know about, that no one knows the origins of that there is no viable treatment for, little or no research bah. But that is my lot in life.

I've recently come to terms with the fact that I am not ugly, useless or a horrible person. That's just a trick this disease plays on people.

Anyways enough of that rant.

Pain management techniques:

Using self hypnosis:


Pom said...

I've just stumbled upon your blog and I'm glad I did. I can relate only too well.

I have HS myself as well as a plethora of other "no known cause no known cure" diseases. I've been dealing with HS for about 16 years now and have had no luck at all with any treatment. Having tried antibiotics, spironolactone,lancing and packing, and a total hysterectomy (for HS and other reasons) I remain(ed) in constant flare and, quite frankly, gave up on pursuing other treatments. At this time we are preparing to relocate to a dryer and cooler climate in the hopes that it helps a bit because goodness knows that the doctors are of virtually no help on this matter even when they might have the best of intentions.

I'm affected on breasts, inner thigh, groin, perianal, and (rarely thankfully) armpits though I've never had 37(!OUCH!) abcesses at one time. I do often number in the double digits though and trying to cope with cellulitis the size of a pancake (and not a silver dollar one either! lol - on my breasts) is an all too common issue for me.

I truly commend you on your courage writing about this disease and posting the photos. That's an incredibly difficult step to take and I've not yet found it in myself to do it.

I do, of course, wish you the best of luck and health and hope that you find at least periods of relief from this miserable crap that I don't think we'd wish on anyone else!

Blessings and healing light to you, dear lady.

Teri said...

There is a support group for fellow HS sufferers on facebook at

It's good to have others to speak with and ask questions. You may want to consider joining.

BTW I publish this blog for two reasons. To raise awareness and to find others out there who have HS together we may be able to help raise awareness and find a cure.