April 23 2018

Updates

If you hadn’t noticed, I took a two-month long hiatus. I didn’t get sick or anything, at least…not sicker, I just got busy.
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In my busyness I kind of lost my voice and reason for blogging. I wanted something that allowed me to unburden my soul and become a passionate/open advocate, but the more blogs I read the more I felt like I wasn’t cut out to be a blogger.
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I don’t want to write each piece thinking about word content, layout, subtitles and headers. I just want to write what I feel and what I know. If this means a lack of subscribers or the inability to monetize, then so be it. This blog was meant to be a light in the dark–for me and for my readers.
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It took me awhile to realize this, but I write for me. Which is my way of saying, “If you’re still with me, thank you!”
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In medical news, I have stayed on Remicade, but at an increased frequency. I now get IV infusion Remicade every six weeks. So far, I haven’t noticed any changes. In addition, my belly button is still leaking, and my liver enzymes are not getting any better.   

Getting Remicade like a boss
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Have you ever heard of step therapy? The concept is that the medical field can start with the most “cost-effective” medicine and move on to the more expensive medicine as needed.
*That is all well and good if health had any regard for cost.
*Which, from my vantage point, it doesn’t.
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Let me backtrack a second…when I had surgery years ago, it messed with my digestive tract. I lost the section that helps with bile binding. This has led to being put on all types of medicine to try and decrease the amount of times I use the bathroom. (I am currently at 10+ times daily). Nothing has been working and to move to the next medicine that would work, I would need to first try (and invariably fail) the next
medicine on the ladder–a medicine that has been known to cause liver issues.
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In order to counter this, my PA has decided to try a different approach; as in, she started me on pancreatic enzymes. I truly don’t know enough about the functions of the pancreas to say if this is a workable theory or not, but the idea of potentially screwing up a working organ, to avoid worsening another has me all sorts of anxious.
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Thank you, step theory.
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The only other medical news to report are my pending surgical/dermatological referrals. Apparently, my belly button is either something insanely easy like a skin issue…or something incredibly scary, like surgery.
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Oh, I lied…I might have Lyme disease; MIGHT being a very key word.
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You like how casually I bury the lead?
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I had a tick bite as a kid that was actually a very traumatic memory. Picture a scary no-tell motel (okay, I have no idea if it was actually that bad, but we were mid move across the country and had taken up temporary residence at a local “inn”), a lit cigarette, and a burrowed tick into the scalp of a seven-maybe-eight-year-old me.
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Fast-forward twenty years and color me shocked when my sister calls asking me about my knowledge of Lyme disease. Apparently, the disease can manifest and mimic other auto-immune diseases.
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When I brought it up with the doctor, they were more surprised at my never having been tested than by me suggesting it as a medical diagnosis. Not sure what the test will say but I have a pending lab order. As always, I’ll be waiting patiently for the other shoe to drop.
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I’ve been keeping up with my half marathon training, so keep an eye out for a post about my progress! I have a lot to tell you. As a girl allergic to exercise with an out-of-shape body, I hope you’ll be pleased with the progress I have made; I know I sure am!
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Work is a topic I probably won’t update you on, for several reasons: the biggest being my frustration at pretty much everything career-oriented right now. It’s hard to wake up thinking you know exactly what you want out of life, only to face reality and realize you really have no clue.
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Until next time…