Oh Really~

Well I buckled and gave in - I have stayed away from my rheumotologist for a year now .. I went yesterday It takes an hour and half to get to OHSU a wonderful Hospital University - Many great doctors there.  But yesterday, caused both my husband and I to raise an eyebrow.  How many doctors just push out their patients like they were checking out groceries.  I went in started to explain how bad my pain has gotten - ie.. stuck in the middle of the mall wondering how I was going to walk back, can't chop vegetables without tears, folding clothes hurt my hands and wrist, driving etc...  Yeah he says - and keeps typing, then I said look at the blisters on my face, What do you think? and my Blue hands? Now I have been in a warm car for an hour and half and waiting in the waiting area at least 20 minutes was not out side at all in a few hours and my hands were still purple.  He glides his chair over and says something - Paul and I looked confused at each other.  I said back so are we dealing with Lupus - it's been a year shouldn't I be getting more blood drawn.  Yeah Yeah - he said that is what I said you will get more blood - we want to see what else Lupus is bringing to the table- You have Reynauds, Fibrolmyalgia, thinking you are Vitamin D deficient amongst other things.  I said ok - He commented that my face is the early stages of the mask.. Yippee -- I guess I will be buying foundation - something I have never worn.  Then he said we must put you back on steroids.  I said NO - No thank you - I cannot put my body through that again - my experience last time was horrific, the swelling was so bad no clothes, rings, shoes etc fit - I looked horrific people said I looked like death wasn't far away - and the pain as they would adjust the meds up and down was so bad - I can honestly say it was worse than giving birth, which I did naturally to 6 children, or having a tube stuck through my ribs into my lunges, or having kidney stones.. shall I go on - Do you get it?  Not to mention you must sign a waiver to take the medicine long term-that is how dangerous it is to you.  I have made the decision to live with my pain and deal with it as it progresses and not take another drug that has the possibility of shortening my life.  I am stubborn and my father's daughter after all.  so wish me good luck, and please if anyone has input as to how Steroids has helped them and not harmed them long term - send me a post.  I would love to hear from those of you who are living it.  Here's to communicating and forming bonds.  Hope to hear from you soon~