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Thursday, July 5, 2012

Oh Boy, Oh Boy

Oh boy, oh boy.  I just got back from the dreaded doctor appointment to hear the results of the dreaded MRI from Monday.  I don’t know whether to laugh or cry.  I predicted it right on.  He could see “no significant changes….some, but the tumor and realized the fentanyl seemed to really help the pain, I started to think the increase, we are talking MAJOR increase in pain is due to the fact that the meds just are no longer effective.  Period.

The neurologist (today’s doctor) told me he told my pain doctor to try something different a YEAR AGO and he never did.  Or we talked about it and he poo pooed it.  Either way, I need to make a change sooner than later.  So I talked to the pain doctor’s nurse, who I like, and I have an appointment at the end of the month.  She could have gotten me in sooner, but it was an impossibly early time so I turned it down.  I never really use the break- through medication so I’ll start doing that.  BUT, she indicated the pain doc might not want me off what I’m currently on for some reason. 

I don’t know; I would wean myself off of it myself but I’m going to wait and see what he says.  I’m thinking the patch might be an answer, used in conjunction with another med the neurologist suggests to him which he never gave me.  I know the pain doctor knows more about drugs than the neurologist, but I can’t believe he’d leave me on something that is like taking a tic tac except that it is destroying my body.  I mean, come on!   I know he’ll take me off it; it’s just frustrating to hear her say he might not want me on the other one.  Something has to change and soon because I truly am at the end of my rope. I talked to the doc about all my other physical changes; the dizziness, the headaches, the horrible, ghastly constipation/diarrhea cycle.

I go nowhere.  I do nothing.  I have help three days a week for three hours each.  I rarely see anyone.  I’m bored, I’m miserable, I’m isolated and I’m in pain.  Much of this is my fault; if I had let myself fall in love a long time ago, maybe he would still be with me.  Maybe I’d have someone at my side, helping me along the way.  Besides my “helpers” from the other side who have no bodies, which makes taking me places difficult.  I read Huffington Post; I read books, though my concentration is trashed.  I can’t stand this much longer, I swear.  I am mediating daily but again, concentration is not good. 

Well, that fruit spread thing I wrote about yesterday did kick in last night…..actually, it kicked in at 1:30 in the morning.  Yeah.  It was ugly.  Details are not necessary.  And I haven’t taken Miralx since Monday, so it was the spread only that did it.  I had a smaller amount this morning.  We’ll see how it works.

In the meantime, the maintenance guy from my building knocked on my door at 7:30.  My car was parked in the rental office area (where they said I could leave it for a few days.  Seems they are paving THAT area today….so he had to move it (I wasn’t in any shape to move it myself).  He said he’d TRY to get it back in the office area tonight (before someone grabs it late at night when he’s gone) because they are paving my area tomorrow and it can’t be where I usually park it.

The fun never ends.  For the normal person, this is an inconvenience only.  For me, it’s a major “figure it out” project.  Oh well.  I just keep thinking of Aimee Copeland and all she must endure…but she will get to the end of it, eventually.  And she’s young…..she has a great attitude, a great spirit and lots of family support.  That means everything.



  1. Hi,

    Judt a random stranger popping along from a link on just ask. Sorry to hear that you are having such a tough time and i hope the doc sees sense soon. Doc's can be such a bother it seems like they need a good poke to get them moving in the right direction. Anyway, please excuse the rambling but its just to let you know that you are in my thoughts and i hope you feel better soon! Focus on the little positives and don't under estimate the joys of shiny objects :)

    good wishes from the uk.

  2. Thanks so much for your kind words...I can't respond to you personally unless they forward them to you, but I really appreciate what you wrote. And I ramble too!!


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