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.



Tonje - Mer en bare ei mor said...

Hey. I'm Tonje.

I'm not good at English, so I use google translate. But I try.

I have hidradenitis, and writes about it on my blog, in Norwegian. I have linked to you from my side, hope this is ok?

I have had a common operation in the groin, but this has not worked.
So now I have a skin transplant - in the groin, lower part of abdomen, below the chest and under both armpits.

All days of HS is a battle with pain.

You write that a treatment is expensive, this medication or laser treatment? Do you get this tire of the country? Here in Norway we have such a medicine that is necessary covered. We just have to pay a deductible to the doctor who is not on so much. We pay taxes to get free medical attention.

Sending you a hug from Norway, you are not alone <3

Tonje - Mer en bare ei mor said...

abdomen = stomach
Not so easy when one is not so good in English. hihi

Shannon Hunt said...
This comment has been removed by the author.
Sha Ghia said...

I just found your blog and have been catching up. I have been through very similar experiences. I have had HS for over 20 years and am just now finding out what it is through self diagnosis. I have been desperately searching for a treatment as I have not had any luck with doctors. I read in an earlier post that you took a medication that healed your sores. You said it was administered primarily for Men with Prostate Cancer. What was it called and what is the reason you stopped taking it? I would love to try anything that may heal my sores!

Ray said...

I have a new site called curehs.us I am looking for people to come and help build content. Trying to find a cure and maybe help a few people along the way. Please let me know.

Teri said...

Shia it was called finasteride. I stopped takign it because like all things we try to treat HS with it stopped working.

Ray I will go look at your site and consider your offer.