Friday, March 29, 2013

Back to the waiting game.

Hi all!  I have been delinquent yet again in blogging.  I'm not going to make excuses, but I will apologize.  I am sorry for not being more regular with the blogs.

Went to the VA yesterday for yet another follow up.  I'm considering just getting a cot and living there.  Firstly I want to give HUGE cudos to the Pain Management clinic.  They really should have never seen me as I was already in a maintenance plan, but my PCP sent me over there anyway.  The VA does not carry Butrans which is the synthetic Morphine patch I had been on since November so we had to do some trial and error.  They started me on the lowest dose, and it did nothing.  After several days in bed hoping that it would build up in my system and kick in I finally gave in and gave them a call.  The decision was made to up my dosage, but since driving the hour to the VA to pick up the script they not only sent me a new dose, but overnighted it to me.  The med/dose I am on now (Fentnyl) is not as good as the Butrans was, but it is what I will call and acceptable level of ok.  The Docs and support personnel at the Pain Clinic renewed my faith in the VA.  I still don't trust it on a whole, but they gave me some of the best care and were some of the most compassionate care providers I have ever been to.  Thank you!

I  headed on over to Dermatology after finishing with the Pain Management Clinic and they had canceled my appointment.  I should have known that was not a good sign about getting on Stelara, but the receptionist squeezed me in anyway. (Another great VA employee!)  Apparently the Biological Board has not met and won't be meeting for at least 2 more weeks.  The Derm resident was honest with me, and I appreciate that honesty.  She said "Don't hold you breath".  Her less than optimistic view was not about getting Stelara some day, but about getting it in time to get the initial loading doses before I was moving.  I guess that next treatment of hope will have to wait till I can get vetted and into the system at the Phoenix VA.  While driving home I realized that was probably a good thing.  I have been so desperate for some kind of hope for relief that I hadn't considered the possibility of adverse reactions.  If I had very bad side effects it could very well stop my move to Phoenix if not worse.  Better to wait.  Everything happens for a reason.

So there you have it.  I am back in a holding pattern.  This week is my last week of Short Term Disability and I am on another holding pattern for getting approved for Long Term Disability.  Hopefully that will resolve itself very soon.  My rent isn't going to pay itself.  I also have my Social Security medical exam next Friday.  Things are moving at their own sweet time, but they are moving.

Happy Good Friday and may you all have a beautiful and blessed Easter!!