Life Beyond Lupus

I went in for my usual rheumy (rheumatologist ) appointment on Tuesday. 1

Good News: The Imuran (Azathioprine)  treatment is going to be cut to half its dosage. 2

Bad News: The dosage is being cut back because my WBC (white blood cell count) is too low. 3

Good News: Less nausea for me, and maybe my patchy hair will start to fill back in!

Bad News: Doctor Rheumy asked me outright how the CNS (central nervous system) lupus symptoms are going.4 (HE HAS NEVER BEEN THAT DIRECT ABOUT IT BEFORE.)

I think the new nurse gave him the heads up. I forgot to follow her to the examination room after weigh in. She wasn't too happy about walking all the way back to retrieve me.

 Oops.

(I think she snitched on me.)

Good News: I asked Doctor Rheumy for his opinion about whether I will EVER be able to return to the work force. I have to paraphrase here because I didn't quite catch all of what he said... but, it was something like... well we can see how things are going and maybe sometime in the future...

(I took that as a "Yes, you will get your old life back in the near future.")

Bad News: and then he went on to say... or maybe you won't return to work... and that will be okay too.

Good News: I am so confused that I don't even feel bothered about what I think I heard him say.

Bad News: He's talking about increasing the Lyrica dosage. 5

Good News: I lost the 5 pounds gained from the first run of Lyrica. (I can actually wear pants for part of the day)

Bad News: Now if I could only FIND my pants.

So, I went and had the several tubes of blood drawn, peed in the cup, and waltzed out of the medical center thinking to myself that maybe I am turning a corner.

And, now I must begin to think about that corner turning.

I think the biggest concern I hold is that when there finally is a cure for lupus, it is going to be too late for me.

My brain is going kerbonkers. My memory is unreliable (Please do not tell me that everyone gets forgetful with middle age... I do not have that kind of forgetfulness, it is much worse).

My speech is affected... I go through bouts of forgetting the names of things. We have more "thingies" about the house than I care to think about. Sometimes even the cats are "thingies" when I am having a really bad day. I point and stutter. My guys have gotten accustomed to it...

I haven't.

I just got through a rough spell of ten days of unremitting breakthrough migraine pain. I have migraine medication that is taken daily and then breakthrough pain medication. That didn't even work through this last bout.

There's the whole spastic leg thing and nerve pain.

And with Ms. Lupus playing Pacman on my brain, I get moody, horribly irritable, and moody.

If there is a cure for lupus out there... and I get to be in line to receive this...

Will all of that go away?

I don't think so.

So I have been praying a great deal.

I am wanting a miracle.

I have found it very difficult to just pray "Please, heal me." I can do that for other people, and gladly so. But, asking this for myself... am I being selfish?

Then I think how happy my guys would be to have me fully functioning. How easier their lives would be.

Yes, that is worth praying for a miracle.

And I know that when my healing turn comes, I would never go back to who I had been.

I was too busy, caught up in the act of being busy, busy, busy... as if that is something important.

Actually, with the past five years of long quiet solitudes while my guys are at work and school... I have had a lot of time for reflection.

And I really am embarrassed at the person I have been. Give me another five years and I will be embarrassed at the person I am right now.

Anyway, I am rambling off the path and picking daisies here.

Just being drifty, as usual.

Let's hope cutting back the Imuran provides positive results. Let's really hope it doesn't set me back by causing the lupus to flare up more.

And now I must be off to go find those pants!

__________________________________

1. What Is a Rheumatologist?

2. Azathioprine (also known as Imuran) is an immunosuppressant used for kidney transplant patients.  Read More --->

3. Leukopenia (Low WBC)

4. What is CNS Lupus?

5. Lyrica

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• #2 Comment from lagataloca 
  6/18/08 4:34 PM | Permalink

  Loretta ...
  Hi,
  
  It's Tanya < N-1-Bluesy-Moon :] >
  
  Are you sure it's not the Lryica adding to everything?
  
  Cause I got soooooooooooooo much worse when I was on it.
  
  Really bad ... until I was getting suicidal thoughts and finally it dawned on me :/
  
  And I gained sooooooooooooo much weight soooooooooo quick, I should have just burst. It was insane and depressing :/  There are alot of site dedicated to the horrors of Lyrica. At first I felt great. Wonderful. For like a week. Then it was down hill.
  
  Are you taking it for nerve pain? I'm on another medication now.  I actually lost all the Lyrica weight, all the steroid weight.
  
  Email me, okay?
  
  
• #1 Comment from klconard1 
  6/18/08 3:06 PM | Permalink

  I am praying along with you for your healing dear.  I much appreciate seeing the update here.  ((((((gentle hugs))))))
  loving you
  karyl