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April 1, 2016

Health Update: Babesia and Something Called Progress

Now that we're well into 2016 (however that happened), I think it's time to update those of you wondering how this health journey is going.

This year started out with the slow improvement I'd been experiencing for the past few months, and then I hit a brick wall. And yes, it was about that painful. March was one of the hardest months, physically, that I have had in years. What we thought at first might be the flu but would not go away turned out to actually be the Babesia, my Lyme coinfection. I even went to the urgent care here to make sure nothing else was going on with my body, and I was "fine" by their basic standards. (They don't test for Lyme or coinfections there.) It was a relief to know I didn't have something else going on but still a wake-up call that Babesia is more serious than even I had realized. (And side note, this Babesia fun just continues to make the dead-end label of "Fibromyalgia" laughable for me or anyone. Anyway...)

Babesia is no joke, and I was absolutely miserable for a good two weeks, with all-over pain and a constantly fluctuating temperature that left me incredibly weak, shaky, and exhausted--far more so than usual. I know that doesn't sound like much, and I deal with a lot of symptoms so that is a pretty short list for me to rate as absolutely miserable, but my whole body was fighting a war and dragging every bit of me through it, and every day you expected it to ease up and it just wouldn't. An extra round of remedies from my doctor and then the routine every month-and-a-half round that I just completed last weekend have helped (and can take a few weeks for their benefit to be felt), as will supplements I continue to take; I am now finally about 85% back to where I was pre-Babesia flare. But retesting when I go back to the doctor next will show just how well we conquered the Babesia, with likely further treatment. Though I can feel that we're winning.

Meanwhile, this month it was time to do tons of bloodwork over again to see how I'm doing on paper, compared to when I started with this doctor last summer and also compared to all the bloodwork results we had on hand from the past five years. And the results are the best I've seen yet. Many things are now at least pretty good, and only three things stood out in those results as big issues: red and white blood cell issues and anemia issues, which are a result of infection which is obviously the Babesia, and adrenal issues from the stress of the infection. (Which I soo felt and am still feeling.) While there still are other issues to address, those were the only glaring ones in this round of bloodwork--my doctor literally said he is happy with these results, just days after admitting that I am indeed a complicated case. He is encouraged (not that he was ever discouraged to my knowledge) and so are we (I sure was though).

I do hesitate to share updates because, while Daniel and I know that ups and downs in this journey are normal and expected, I know that others tend to see the ups as "You're all better now!" and the downs as, "Ugh, you need to try something else--that's not working," when neither could be farther from correct. So please keep in mind with these updates, especially this roller coaster of one, that this is a very long process with highs and lows--getting to whatever is my level of optimal health can take a very long time, while this current type of every-month-and-a-half treatment I'm doing can take 10-12 rounds, and I've only just finished 7. And that is just the average timeline given--my body is known to not play by the rules.

Yes, I am improving. And that is unbelievable to say. But I am still very sick. As I put it in a Facebook post recently:

Let’s say everyone has 100 switches to turn on to make their body work correctly. When I started treatment with this doctor, all of mine were switched off. Now 10 are on. Does 10/100 make you all better, able to go places finally like a normal person? No. Does having 90 still off discourage you? Maybe sometimes, but not really because you can feel the switches continuing to be switched on. You can feel the progress, even if you can still feel how far you have to go.

The lows are hard and I am still learning to see them as simply bumps (or maybe craters) in the road and not defeat. But we're still going, things are still changing, and we are still quite hopeful, something we definitely have not always been.

You gotta take pictures on the three-hour ride home from the doctor...

We know that on paper this treatment has every reason to work. But we also know that it won't unless God gives the go-ahead. So every step of improvement has been through His doing, and to say we are grateful is an understatement. We are trusting that He will allow as much as He sees fit, and praying and hoping that He sees fit for it to continue. In the meantime, we're doing our part.

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