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…

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Posted April 23, 2018 by Intrestinal Fortitude in category "Crohn's Disease

3 COMMENTS :

  1. By Caz (InvisiblyMe) on

    I’ve struggled a fair bit with blogging too in the sense that I got so wound up about what I was posting, whether it was all neat & logical & helpful, but I didn’t always want to be helpful; sure, on some posts I definitely do, but other times I just want to blurt out what’s happening and be honest, to show the vulnerability and the downsides of illness that are genuine and authentic, no wrapped up in stressing over the blog layout, content and spelling. I’m really glad you’ve realised that you write for you – please keep it up, I enjoy reading your updates!

    That said, I do wish things were better for you. As for the Lyme disease, it’s definitely worth getting checked out. I’ve been tested but only a basic NHS test in the UK, which, I’m told, isn’t the most accurate or reliable so who knows. Keep us posted! Sending hugs and good luck with the half marathon training!

    Caz x

    Reply
  2. By verena on

    First off- welcome back! Don’t ever feel bad about taking a break, health always comes first!!

    second, I hate step theory- how does it help the patient? It doesn’t.

    Fingers crossed for your diagnosis.

    Reply
    1. By Intrestinal Fortitude (Post author) on

      Verena,

      Health coming first is a new concept for me. I am slowly working on learning that it’s okay to put myself first sometimes. Step theory literally makes my skin crawl, it makes no sense for patients! I have yet to learn about Lyme. It almost seems like the universe is warning me. Not really, just a series of annoying and badly timed occurrences. Hoping to know more soon!

      Reply

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