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  • Nanworimo 2009

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  • August Blues

    I’ve been waiting for things to take a wonderful turn for the better so I can report something lovely. Hasn’t happened, so here’s the boring, difficult truth.

    The June uterectomy/ooferectomy surgery was a success (seems I had debilitating endometriosis), and I still have one healthy ovary intact. Also survived a July, fully of birthdays and anniversaries with my soon-to-be-ex-spouse (we had a good time together).

    But now I am slogging through August trying to continue to recover from surgery while adjusting to new Lyme meds, restarting physical therapy and non-aerobic walking while finishing legal paperwork for the divorce and taxes.

    It is all hard, all painful, and from day-to-day seems overwhelming if not downright impossible. I am better in some ways, but am so extremely fatigued that I have the energy for maybe one task per day. On a remarkable day, two. Simply scheduling an energy audit seems undoable, and I really must do it. My electric bill is off the charts — way too large for my small place. And I must also find out what has happened to my application for Medicare B. And apply for some other state services I may be eligible for now. I am still not unpacked — haven’t been strong enough. Haven’t been able to think clearly enough to organize. One of the reasons I put off the energy audit is that I’d like to have a few more things put away and have easier access to all things electric. Hasn’t happened yet.

    On top of it all, I am grieving that the life I planned for is completely gone, forever. This takes far more energy that I would have guessed. Small wonder I find moving forward near impossible.

    In spite of all this, I think I am a little better, post surgery, although it is nearly impossible to tell only seven weeks out what with all the fatigue. I still need pain meds, although not very much, mostly for Lyme pain. But I’m not writing (reflected in lack of blog entries) or creating any art. A very bad sign.

    I read a meditation last night that asked me what gifts I would ask from the Universe to help me through this difficult time. It has never occurred to me to ask for gifts, and I found it impossible to think of anything to ask for since every good thing I have wanted seems to be taken away from me.

    So, I guess if you read this, send good thoughts my way, and wish me the energy I need to do what needs to be done. That would seem like a miracle at this point.

    Blessings to you all.

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    CDC Positive Western Blot

    I came home this past Wednesday from my second trip to San Francisco to see my LLMD (Lyme Literate Medical Doctor). She’s the one who gave me a clinical diagnosis for Lyme Disease four weeks ago.

    During this visit I got my blood tests results back and I am VERY positive for Lyme Disease, even based on the ridiculously narrow CDC guidelines (for both past and present infection). You don’t need a positive antibody test to be diagnosed with Lyme (because Lyme is a clinical diagnosis based on symptoms and history, not lab results), but I feel vindicated to have it show up in labs.

    I’m surprised by the fact that I’m still making the antibody after being sick for so long – it shows that my immune system is still trying to fend off the bug. I’m surprised because it’s more common for the immune system to just shut down so that no antibody is present (which is one of the reasons there are so many false negative Lyme Disease lab results).

    I also tested positive for Bartonella (a common co-infection found in people who have Lyme). My LLMD suspects I have other co-infections as well, including Babiosis and Erlichiosis. In addition, she found two unrelated infections: H. Pylori (the bacteria that is related to ulcers), and shingles!

    Next week I’ll start taking a combination of antibiotics and Prilosec to kill off the H. Pylori. Then I’ll continue with the antibiotics, which will hopefully knock out the Bartinella and other co-infections, as well as the Lyme bacteria.

    The next confirmation of Lyme infection will be when I respond to the antibiotics, either by feeling better, or by experiencing a Jarisch-Herxheimer (or “Herx”) reaction. A Herx happens when the bacteria dies-off and releases poisons into the body, temporarily making symptoms worse. Oh joy. I may have a reaction either way immediately, or it could be months. I’ll keep you posted.

    In the meantime, I have a TER-rible cold, and I’m tracking my Lyme symptoms (there are 47 on my list), and reading, spinning, knitting, and writing when I have the energy.

    I’ll try to post an update once per week, in case you want to check up on me. 😉

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