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?


Hugs
Kelly

Weird turn of events..

So, a lot has been happening with me lately.  For instance:

- I was diagnosed with Rheumatoid Arthritis
- Had an allergic reaction to the RA medication first Rheumy doc put me on
- Did the huge "big peel" AGAIN
- Decided that I needed a 2nd opinion regarding the RA diagnosis
- Had oral thrush 4 times
- countless steroid shots and pills
- A bunch of labs and X-rays
- Gained a BUNCH of weight - that needs to come off  NOW!
- My hair started to fall out

So, with that being said.  I made the appointment for the 2nd opinion with a new Rheumy doctor at Froedert Hospital.  I'm so glad I did.  She said that I didn't have RA but I was hyper-sensitive because of what my skin was doing. Recommended seeing the "super-duper" Dermatologist there and once I'm off the steroids, if I have swelling, pain in the joints, etc. I'm to make an appointment with the new Rheumy and she will re-examine me at that time.  But she truly thinks that all the swelling and pain I've been in is due to my skin. Lovely....

Did I mention that Prednisone is a EVIL drug? While it's a good drug, it's EVIL!!  I totally gained a ton of weight with this stupid drug and now I have to get the weight off.  I feel out of sorts with my weight the way it is.  Now that I'm totally off the steroids, I feel better, I'm not eating every 2-3 hours, and not waking up every 2 hours all night long.  What a relief!!  I was getting so frickin' sick of this.  

We ( my family) have been through way too much since November 2010 and I'm so glad to see it slowly come to an end.  Things are starting to get back to normal (whatever that is) and I'm able to function again like a REAL human being.  What a concept!!

I've also noticed that while I'm getting better, Spring has sprung. My tulips are coming up and blooming, the grass is getting green, kids are playing outside, and the sun is out longer at night.  

See there is a bright side to things.  I wouldn't have believed you several months ago, but I do now!

Hugs
Kelly

Will it ever end??

I know it seems like all I've been doing is complaining about this and that, I'm sorry about that.  But those are the things that weigh heavily on my mind lately.

I'm sick again.  I'm on another round of antibiotics, pain killers and steroids.  I'm exhausted, frustrated, annoyed, confused all rolled up in one emotion.  The doctor is testing me for arthritis because some of the other symptoms I've been having don't agree with the skin infection diagnosis.  So I had a round of blood work and X-rays done and should know the outcome when I go back for a follow up in Feb. I'm in constant pain and I don't get any help around here.  I'm frustrated with my family and they just seem that everything will be taken care of regardless of how I'm feeling.  That sucks!!

There are other things going on, especially with Sam.  They (the school) thinks it's in Sam's best interest to repeat the 5th grade in the fall and we concentrate on his health from now until then.  Sam's sad about that, but DH and I think it's for the best.  We are also going to take him to the Headache Clinic at Children's Hospital as soon as the referral goes through.  I didn't know there was so much red tape to go through JUST to get an appointment. Geeze..

I thought I would update and hopefully I'll have some better news next time I post.

Kelly