Thought for the Day:

Hope is the thing with feathers
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.

- Emily Dickinson

Wednesday, May 26, 2010

Lack of Blogging

Sorry for my recent hiatus. First I had another couple REALLY bad weeks and just didn't have it in me, and now my parents are visiting from the south. The last two days have been pretty decent. I seem to be rebounding. I hope it lasts.....maybe I can do the course I'm supposed to do this summer after all.
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5 comments:

  1. DominiqueMay 26, 2010 at 9:13 PM

    Good luck! I really hope and pray you rebounding! Glad to see you back!

    ReplyDelete
  2. jenjiMay 26, 2010 at 9:22 PM

    Hey.

    Sorry to hear you're having a rough time.

    I thought I might update you in the hopes that you might find something familiar with my recent flare and thus find yourself some relief.

    The barnacle on my tonsil turned out to be a "cyst of infection" leftover from what the ENT termed "chronic tonsillitis." I don't know if that's what you have going on or not, however I can tell you that my B12 was profoundly low (so was Vit D, however not all that uncommon at this latitude) and so now I'm getting shots once per week (plus Vit D supplements for 8 weeks) and after about four weeks of B12 I'm feeling quite a bit better. My energy is better, my appetite is back and I don't feel as though I'm going to literally die every waking moment. What a difference. March - May was a whiteknuckler. I'm finally able to get out and about here and there again.

    Just thought I'd share, as maybe B12 could be of issue for you as well? It may be worth checking out.

    jenji

    ReplyDelete
  3. upnorthMay 30, 2010 at 7:15 AM

    jenji, thanks for the update. I'm so glad things are going better for you. I've heard from others that B12 can really make a difference. I have had my levels checked and they've always been high normal. Still, sometimes I think I could try it anyways just to see.

    I just had a slew of tests run as I think my GP is looking for some type of autoimmune. My throat blisters are almost always commented on as "looks viral"....like that's helpful. Let me know if the good patch keeps up.

    ReplyDelete
  4. jenjiMay 30, 2010 at 11:30 AM

    Have they run ANA tests on you? Painless throat blisters could be indicative of SLE, Sjogren's et al. My doc basically thinks I have both of those with CFIDS on top of it. My ANA levels are all over the map; sometimes normal, sometimes out of whack. Also, have you been screened for Narcolepsy?

    I cannot express how many folks I've encountered who have N as well as CFIDS, lupus, MS etc., as narcolepsy is also autoimmune it would make sense that an underlying autoimmune disorder could coexist with it; autoimmune disease tends to run in packs, you will usually have a couple of different diseases at once. Narcolepsy would require a sleep study, which given your particular daytime sleepiness/exhaustion issues wouldn't be all that out of the ordinary to order for investigation, however I would recommend you see a sleep specialist who is also a neurologist for that investigation. In fact, always go with specialists when you can. A rheumatologist might be best for your autoimmune discovery.

    Let me know if I can offer you any other insight; it's a puzzle and we all have different pieces to offer one another.

    best,

    jenji

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  5. upnorthJune 3, 2010 at 9:35 AM

    Tests came back...nothing out of the ordinary. No autoimmune. Just stupid M.E. (and my typically low WBC with a flare and low feritin).

    ReplyDelete

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