Letting Go of Society’s Expectations (…and Bartonella)

Despite the fact that my brain has been functioning a lot better recently, I haven’t much felt like updating; completely the opposite of several weeks back, when I couldn’t think to save my soul but desperately had things to say! I’m learning a new language, so most of my spare brain energy has been going into that. This minor study will also help me decide if I may be able to attempt finishing my degree come next August. If I cannot, however, I think I’d be okay with just letting it go. After all, I do have at least one degree–even if it’s not what I set out for–and my health is too precious to waste on going to university to finish a degree I may never be able to use, and which may worsen me irreversibly trying to obtain.

I have fought too hard to get to this point, and I don’t want what society says I should be doing to dictate what would actually be best for me. I reject the idea that my only purpose in getting well should be to immediately resume the life I once had, or try to get it as close as possible. If I do reach the point where I am finally stable, I would love to try and finish and become a researcher. Or at the very least, a counselor. But that would take a lot of trust in the fact that I’d still be stable and healthy enough to actually do those things after completing my degree. One of the main reasons I’m disabled is that my symptoms vary so dramatically: I cannot reliably plan even a week in advance, much less years. So if I never again become well enough and well long enough for that, wouldn’t it be better to attempt some type of small job with the degree I already have, than to use up every bit of health I’ve finally gained, in pursuit of something that won’t do me any good? And even doing that would require much more health than just enough to make sure I don’t starve on my own, which at this point is all I can realistically expect, if anything. If I only ever improve enough to take care of my basic needs, I will be thankful.

Illness has taught me my worth is not defined by what I can do, how much money I make, what level of degree I have, or what job I have, if any, if ever. I am worthy because I am here, because I exist.


Okay, let’s see. From the 16th-23rd I was having a typical Lyme flare… How is it possible that this pattern hasn’t changed, practically since the time I got it? Is it really THAT predictable? But yes, severe headache and neuropathy issues, and I also recall being more cognitively impaired during then, as well as thirsty–again, all typical.

I felt it’d be okay to restart my stretching routine a couple weeks ago, so every other day I get some “exercise”! No relapse, yet. I’ve been able to cook a lot lately, also, which is encouraging. It’s still difficult and frustrating because my muscles fail the day after using them, but hopefully that will improve more, soon. If the muscle weakness got worse when I got these infections, surely it will improve as I continue to treat them.

Dare I say that the bartonella eradication is going as planned? The Bactrim is amazing, and I think the bartonella is.. well, it might be gone, or at least, finally beat into submission?! The protocol is to continue treatment two months past the cessation of symptoms. I talk to my Lyme specialist next month, so we’ll see what he says! Then I can start Tindamax to finally treat the Lyme disease! The antibiotics I’m on now do treat it, but only minimally: just enough to keep it from taking over. I’ll be stopping the Rifampin since I can’t take it with Tindamax, but I may stay on a maintenance dose of the Bactrim since bartonella has a crazy-high rate of relapse, and I do not want to go through this again. I feel I’m probably being unrealistic that I should never face it again, with the way my immune system is, but… For now I’d really like to enjoy my improvement.

 

Til next time,

a rainbow at night

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4 thoughts on “Letting Go of Society’s Expectations (…and Bartonella)

  1. Letting go of society’s (and OUR) expectations: This is one of the toughest lessons, right? I keep needing to re-learn it (and re-learn and re-learn…) Oy! ;)

    I’m always so happy to hear about your everyday successes … like the Bactrim working … cooking … and your better-functioning-brain. (Yaay! Go brain go!) I also realize that, if you’re anything like me, you may share that one moment and feel completely physically knocked-down the next … so I will also say that I hope the good things continue for you and that the other-things will bring some new guidance along with them, while causing you the minimum possible difficulty.

    A while ago I saw a post where you asked what people would want more of here. Did you still want to know?

    PS: I got some color spoons from Zoya (still figuring out what bottle to actually get :) and my boyfriend brought me a little stuffed spyrochete the other day. See, you are inspiring people both with wisdom and fun! It made me laugh because he told me the description said something like “giant spyrochete” so he thought it was going to be enormous like 5 feet or something … and it turned out to be 3 inches tall … but of course, since spyrochetes are microscopic, anything with ANY dimension at all is pretty much gigantic lol!

    Thank you for sharing your world!

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    1. Hello again, friend :)

      Ahaha, I had to laugh when you mentioned being okay one day and knocked-down the next, as when I read it, I was in one of the knocked-down phases! The Lyme had flared even more and was quite angry, but now it’s finally passed and I’m able to reply. Your words have touched my heart and I am thankful for such kindness coming from across the internet, into my life. May you also be very blessed. ♥

      Yes, I do still want to know! I deleted the post from lack of response, but yes, I’m still curious. I know I want to add a page explaining these illnesses a bit, but beyond that…

      MY GOODNESS, a body pillow-sized spirochete! That sounds like something out a nightmare, maybe… Haha, you might enjoy this picture. I took it for a friend when she was having a very rough day–it’s not my fault the things make such cute pincushions. ;) [click]

      Ah, I love Zoya, and I’m sure you won’t be disappointed. I’m wearing Trixie and Raven right now (alternated nails) and for the holidays I’m planning on showing off Carrie Ann, which is a deep dazzling red, and actually one of the first colors I ever got (as a Christmas gift–that was a year ago, now I have almost 20 colors; I love their sales, lol!).

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      1. Thank you so much for these words! I always look forward to reading what you’ve shared :)

        LOVE the Life Lessons section. That piece is super-important to me. I love the Glossary too.

        For the answer to the question in the other post … I come here for:

        1. To check up on you :D

        2. To know I’m not nuts ;) (aka: to look in the tags column under things I’m experiencing with my Lyme symptoms and read a story about that thing, so I can see if your experience is similar to mine) My favorite part of your blog is the Tags/Categories list! lol

        3. To know what to expect (you explain a LOT)

        4. I just looked to the sidebar and saw “black bean brownies” wha? lol Maybe you should start a Recipes section lol

        I don’t know if that was helpful but I think your posts are really helpful just the way they are. I do like being able to go to whatever we are coming for on that particular day – checking-on-you or symptom-lookup or coping/life-lessons.

        You do a great job!

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        1. I certainly hope my other passers-by find this site as useful as you do!

          1.) How sweet of you to check up on me, I am flattered! :D (And also sorry my updates have slowed!)

          2.) You are definitely not crazy. I think part of the reason I wanted to do my blog in this particular way, was because there weren’t many blogs out there that gave me what I wanted when I needed it. I’m very anal about my tags, especially, so I’m glad they do help! They’re set up for MY use, so I can moniter when and how various symptoms have been showing, but I’m glad other people find it beneficial to their needs, as well!

          3.) I do explain a lot, LOL! Actually, some of my friends say reading this is like reading an encyclopedia and they can’t comprehend much…to which I must reply, Well, it’s mostly for other people with health problems! Because goodness knows we have to learn a lot about these terms and things if we want to be in charge (at least partially) of our health and treatment.

          4.) You know, I was thinking of that a day or two ago. I have a bunch of recipes, particularly for snacks and sweet things, that others might enjoy. I don’t have any food allergies like others, but everyone on long term antibiotics needs to be on low sugar and reduced carbs. I just figure there are so many other sites for that, if people want them?

          Thank you, again. :)

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