Monday, June 3, 2013

No one should be allowed to mess with my life!

I want to scream and shake my fists at Kaiser.  I emailed my rheumatologist with info about my joints screaming in pain, the continued issues from before, how I feel worse than ever, etc.  I feel worse than the worst days of radiation.  Honestly ... I do.  I'm just getting really good at pretending nothing is wrong.  I don't want to be "that" girl.   Anyway, I emailed him and was pleased to see that he wrote me back at 9:17PM last night.  But, that happiness was short lived.

His email stated he believed my joint pain was withdrawal symptoms from prednisone.  Hmmm.  I stopped taking Prednisone at the very least 2 months ago.  8 Weeks, at least.  If not more than that period of time.  I did taper a bit quickly because I was told to.  I was angry.  I was lying in bed, sore, miserable and now pissed off.   I wrote back that it had been two months, that I feel worse than ever and that this isn't normal.  I explained that while he may look at me and see an overweight person, just before all of this I was very active.  Working out, hiking, eating good, etc.  I was doing 5ks and hoping to do more than that this year.   Now I can't even do the simplest of things without feeling like I ran for a week straight and need to sleep for a week straight.

This morning there was an email from my rheumatologist saying that he needs to see me in his office.  So ... I got an appointment for Thursday morning.  I'm prepared to go in there and not let him brush me off.  So far I have spoken with at least a dozen people (via email) that I have met on the Wegener's Granulomatosis forum that were diagnosed even without a tissue biopsy.  All their biopsies were inconclusive, but they had blood test results and signs and symptoms that were increasing.   So many of them are urging me to go to UCSF and speak with the specialist for Vasculitis.  And, I want to.   However, I am sure Kaiser will NOT authorize that or pay for it and I am not exactly in the position to be racking up thousands of dollars in medical bills.

My inflammation blood tests were high.  Hmm, sounds like a red flag to me.   I had a high proteinase-3 blood test ... another pointer to wegener's.  I have all the signs and symptoms, sinus problems, ear problems, eye problems, joint problems, constant coughing and sneezing, feeling like I was run over by a truck and unable to shake that, getting winded easy ... hmmmm sounds like I should be getting better taken care of. 

Please ... please I am begging whoever would listen.  Please let me get some kind of relief soon. 

1 comment:

  1. I'm so sorry to read these last few updated , Nicki, I was really hoping you had just been busy with work & moving and starting to work out again. I'm praying you get some answers soon, and start feeling better so that you can try to get back to "normal". Still thinking about you a lot. **hugs.