Wednesday, November 23, 2011

Not sure what to do.....

So, I went to my dermatologist the other day due to a skin infection that was not getting better on it's own. It still amazes me that now, after living with this disorder/disease for 40 years it's just within the past 5-10 years or so that these doctors KNOW what I have and the prognosis is still the same....none...sigh.

Anyways,  I get the common lecture of "have you tried this?  or that? and what were the effects of it?" .  But this doctor gave me a little bit of hope that I just might take him up on.

I was on a clinical drug trial for Accutane when I was 9 (yes you read that right) and this drug actually made me worse than I am.  Dry eyes, drier skin, etc.  Not fun.  And I swore that I would never ever go on anything Accutane related ever again.  Dr. Huang at Froedert Hospital made me think otherwise.  The drug Soritaine was brought up to me several years ago by a different doctor and they scared the crap out of me by listing everything conceivable that could go wrong and never really answered MY questions about it.  They were TOO excited to put me on this drug.  Needless to say, not only did I not go on this drug but I found a different doctor all together.  Hate doctors and practices like that.. Hate Hate Hate.

As I've been getting older, I'm finding out that my skin is actually MORE painful as the season change/weather fronts come and go, etc...Now I'm having a hard time doing the simple tasks of writing with a pen, holding on to a cup or glass with one hand (now I have to use both hands), grocery shopping is a joke - I usually have to bring Nathan with me.  Although he doesn't mind helping me, it's the fact that I need the help more often that is freaking me out.

So back to my dilemma.  Soritaine can make it possible for me to move my hands more freely, the gross skin on my feet could be less, etc.  The doctor said we could start on baby amounts and work up rather than starting at a HUGE dosage and trying to taper down to where it's beneficial.  And yes, there would be monthly vistis to the doctor's and lab work (nothing that I've haven't been through before and will go through for the rest of my life).  But the way I am now is the only way I've ever been, it's the only way I know how to do things. How does one go from being a certain way physically for 40 years and then have the possibility of have "nice" skin? How does one function with the"new" skin??  Is it even worth it at my age? I'm in no way saying that 40 is old. nope not at all....that last question was a weird one but it needed to be asked.

If you were me (not that I wish this disease on ANYONE) would you try a drug that could make your life easier or no?


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