Sunday, November 9, 2014

62. Doubt. . . Yet My Energy Is Excellent.

Без труда́ не вы́тащишь и ры́бку из пруда́.

No pain, no gain.

 Literal: Without effort, you can't even pull a fish out of the pond.

Well, here it is, 6 month point post-HSCT.

This past month has been one with some stress of doubt. 

I have had more foot and leg and hand pain this month. My joints hurt and my feet burn and ache like a toothache, all the way to my butt.  It's as if demyelination is still going on. I wonder. I worried. I thought perhaps I need a few IVIg treatments. ?.  I have to admit I felt some doubt. If my legs buzz, isn't that new demyelination?  I guess it's natural to worry some.

I contacted Dr. Fedorenko and his response is that I must just be patient. That this is quite normal for the stage I'm at in healing, and that my good energy and other positives show that HSCT has worked and that it takes at least one year to get to where I will be positive it's stopped my CIDP. And in fact, no one I know with CIDP who has gone through HSCT found it not successful for them. But they do all say that the first 6 months are very up and down.  So that is where I am.

Though I will say that this past week I am having less pain and my energy is, as noted, very very good. I am productive and am doing well with around 8-9 hours sleep at night (or even less). Before HSCT, I was unable to really function well on less than 10-12 hours a night.

The other variable tossed in is that I've tapered off the one Lyrica I was taking each night, and now only do one every other night. That's down from 2 Nortryptaline I used to take before HSCT, down from 5 Nortryptaline I was taking at the onset of my GBS/CIDP. I hate meds! I'll get off everything as quickly as my body will allow it.  So perhaps tapering off is letting more of the pain I had show through.  One Tramadol is really enough to calm the pain as it starts each evening. And in fact I have taken one only 4 nights this week.

I think maybe I'm on the upswing again.  But I wanted to note here that more pain and some doubt might be expected during the healing months post-HSCT.  I will take Dr. Fedorenko's advice and will just let my body continue to heal.  I know it can take up to 2 years for blood counts to get back to normal.

I just got my 6-mo blood tests back. Here's what the WBC results look like graphed with the past year or so. You can really see that they're all over the ballpark since my HSCT in early May. Flat green line is average high levels and dotted green lines are average low levels. I can't tell if I'm dead or not from looking at these. I'm depending upon my good energy levels to get me by. Will have Dr. Fedorenko take a look at these for sure.

And today's results graphed since 1/1/2013 for comparisons:

Близо́к локото́к, да не уку́сишь.

So near and yet so far.

 Literal: Your elbow is close, yet you can't bite it.

On to the less important but vital changes: HAIR. I do have a head of hair now. It's not thicker or darker or curly as I was hoping. It's just my hair. It sticks straight up on top, so I'm using mousse to bend it (smile).  I sure do like the ease of it. Swoosh it with some gel and rub it backwards. How easy is that!  But this is how bad it looks at this point, about 1.25" long. The earlier growth seems to me to have fallen out. I guess they're right that your "real" hair begins coming back at about the 4-month period.

One more issue:

I was supposed to be in Paris right now, following time in Prague, Amsterdam, Brugge and Brussels.  But about 2 weeks before I was scheduled to leave I got some weird labs back that seemed to point to an infection. Seemed to me I had a UTI, but the culture didn't prove that out. Meanwhile one Dr. noted I had "Acute Renal Insufficiency" and I just didn't feel like I ought to leave the country if that was so. I think his evaluation over-reacted. I feel fine. I think it was just a blip on the post-HSCT healing process screen.  But it cost me my 6 week trip.  Just as well, I suppose. It was perhaps folly to consider doing that kind of trip at the 5-month point post-HSCT.  But that is evidence of how wonderfully well I felt early on.  And I continue to feel quite well other than the pain that rolls in evenings. And the numbness/weird sensory stuff that presents again now. 

So, I'm writing this from my Rocky Mountain house. I'm sitting here with this room view, with a bright sunny warm Indian Summer day outside. I've been here painting another bedroom; finishing touches here and there. I'm headed home tomorrow. The weather here in the Rockies has been beautiful other than a very cold snap right after I arrived. That cold snap kept me from sleeping one night due to pretty hefty foot, leg, hand and joint pain. So I'm happy to go back to my sunny warm California before the winter rolls in here. 

So, that's the 6-month report. Back to working on the house, and healing from HSCT.

Thanks for following. I wish you all HSCT and the cessation of your disease progression!

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