Day+489 (1 yr, 4 mos, 2 days)

My last appointment at PMH was almost 2 weeks ago now, but I wanted to wait until I got all my test results back before I posted.  Good news again!  I remain undetectable for CML cells!  Always a BIG sigh of relief when I get that result.  My next PCR test will be in 3 months’ time (i.e., mid-November).

My routine bloodwork wasn’t anything to write home about.  My red blood cells have been the highest they’ve ever been since before the transplant, but still nowhere near the normal range.  I’m disappointed that recovery here is so slow, but at least it’s moving in the right direction.  No doubt, the low red blood counts are contributing to my “crashing fatigue” – yeah, it’s a new term I picked up – it just means that I’m all fine one moment and the next, I crash and must lie down immediately and rest.  The doc and I are working on building up my energy and stamina.

My white blood counts are low too.  I was hoping they’d be closer to normal, so I don’t have to be a germaphobe anymore, but I guess I still have to.

I’ve been reading a lot and doing a lot of research lately, trying to find solutions to some health issues I’ve been experiencing.  One thing that has really been bothering me (among others) is that I have severely dry facial skin.  The skin on the rest of my body is generally dry too, but an application of  moisturizer after a shower will generally be sufficient.  But my facial skin is another story.  It is one hot mess – red and inflamed, crusty, flakey, itchy, cracking, waking up with pain and streaks of blood on my face due to the skin cracking overnight.  It gets better for a few days, and then the cycle repeats over and over again.  It’s horrible, disgusting and oh so painful and uncomfortable.

That’s where my research comes in – what is causing this?  What can I do to make it better?  I suspect it’s a combination of Hashimoto’s Thyroiditis and food sensitivities, but it can also be caused by the chemo/radiation or Gleevec, or simply just ageing (haha).  I’ve switched over to only natural skincare products with no chemicals and nasties.  That helped a bit.  I’ve installed a water conditioner in my home to “soften” the water and remove chlorine, minerals, etc.  That helped a bit.  I’ve tried to make sure I take my thyroid meds as directed and keep an eye on the thyroid levels.  That helped a bit.  I drank more water and am taking fish oil.  That helped a bit.  I’m staying away from dairy products.  That helped my facial skin a bit but it did wonders for my digestion!  What d’you know? I’m probably lactose intolerant and perhaps also allergic to the casein and/or whey in milk!  My doc advised I should probably do an elimination and challenge diet to make sure.  My search for the cause continues.   I hope I figure it out by my next post!


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4 Responses to Day+489 (1 yr, 4 mos, 2 days)

  1. Michelle says:

    Hey Winnie!!! Nice to see you are still around us. Miss you in chat. Are they sure the facial issues aren’t skin gvh? Just a thought. I had your “crashing fatigue”, I felt like I hit a brick wall and couldn’t move. Brian had to actually pick me up and put me in bed. At almost 18 years out (9/21) I have found relief in the form of an ADD medication. I have better concentration, memory and energy with this med, and seriously miss it when I run out! LOL
    My other thought on the skin would be menopause…that wreaks havoc on us ladies.
    I think I have told you this, but my blood counts stayed below “normal” for a while after bmt. My onc said that it was my “normal” and as long as it stayed consistent, he wasn’t worried.
    So glad to see you, stop by chat, we have had quite a surge in visitor’s and I am sure they would love to hear from someone other than me! LOL
    Lots of Love from Lubbock.

    • helpsavewinnie says:

      Hey Michelle! Nice to hear from you! I did discuss the dry skin issue with my doc and he didn’t think it was gvh, but then you never really know cause there’s just no way to test it. I’m so glad someone knows how “crashing fatigue” feels like!!! I tried to explain it to my hubby but he just doesn’t understand. I’ve never felt such fatigue before either so I guess his not understanding is understandable lol! I guess the low blood counts will take a much longer than anticipated time to recover, if they ever recover! Sorry for being away from chat…I’ll drop by soon!

  2. I see you are keeping positive, and continue to conquer daily challenges. Have you tried “Juicing”? I found that in the morning if a due a vegetable and fruit juice mix it boosts my energy level all day.

    • helpsavewinnie says:

      Hey Kenneth…Yes! I’ve tried juicing before, in particular, during the few months before my transplant. I do credit juicing as putting my body in tip-top shape for the transplant. In terms of energy and general well-being, I’ve never felt as healthy as I did when I was juicing. I wasn’t able to juice after the transplant cause I was not really allowed to eat raw stuff. But now I have no excuse! Thanks for reminding me…I should start juicing again!

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