Thursday, November 10, 2011

Medical Disappointment

I am sitting in my living room crying tears of disappointment after my doctor's appointment today.  Don't worry, nothing major is going on.  I have a skin condition called Hidradenitis Suppurativa. I think I spelled that right, but how 'bout we just call it HS.  It's a cousin of acne.  But it causes large swollen, painful lumps under the skin, in various places on your body.  My first memory of it was back in college. It's a close enough cousin to acne that it has been successfully treated with the acne medication Accutane.  If it works, I would be taking it for the rest of my life to control the HS.  Accutane can cause some horrendous birth defects, so going on the drug requires you to be registered with a federal program called iPledge.  There is a lot involved with iPledge.  First you must not be able to conceive.  OK.  I had my tubes tied 7 years ago.  I'm good there, right?  Nope.  As long as my uterus and ovaries are intact, I am still considered able to conceive in the eyes of iPledge.  That means I would have to go on birth control.  Wait, the whole reason I GOT my tubes tied was so I wouldn't have to worry about birth control.  So if I have to take Accutane forever to control my skin's HS, then I have to take birth control forever???  AND, before each month's prescription is written, a new pregnancy test must be taken.  EVERY MONTH!!!  Second thoughts started entering my head.  Also, blood tests to check the function of my liver had to be performed before starting it.  Of course, they also have to tell you about a drug's side effects.  So they include:

  • possible worsening of asthma (great, I haven't even gotten my asthma officially diagnosed yet, and now I'm going to make it worse?)
  • possible worsening of joint pain (I have a knee/hip problem that already causes occasional disabling pain.  so that could be worse too?)
  • possibility of severe depression and suicide (oh but I'll have clear skin!!!)
  • you can't donate blood while you are on Accutane (I donate at least twice a year)
  • may affect your vision, so no driving at night for the first couple weeks (um, how do I gt home when I close at work???)
The list went on and on, but these were the ones that bothered me the most.  So I made a tough decision.  I told the doc I changed my mind and didn't want to go on this medication.  I would just live with the HS as I have been.  On my way home, I cried in the car.  I had been excited to start this medication and end the painful symptoms of HS, end the scarring, the embarrassment.  The disappointment was huge. But the risks far outweighed the one benefit: clear skin and no more HS sores.   

I feel better now.  This is almost like therapy.  Oh do you or anyone you know have Hidradenitis Suppurativa?  How do you (or they) handle it?

**All writing and photos contained within this blog are original work and copywritten to Rachel Gage.  Nothing may be reproduced or used in any way without express written consent from the owner.**

No comments:

Post a Comment