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Lyme Journal. Not a happy one, sorry.

July has been a month of suck for me, in my personal life, in my family, and with my health.

I still can’t breathe, I went to the ER, they found nothing, my Lyme doc won’t call me back again, because, apparently “go to the ER” is the standard reply.

The fact that the ER didn’t do an EKG or an ultrasound merely because I’m being treated for Lyme (and I get to pay $150 for that pleasure…ironically, the doctor in March who failed to look up my nose for a sinus infection but gave me an EKG and chest x-ray did more, and for $25…though I nearly got pneumonia because of her oversight) is horrifying to me, because I said I had chest pain.  I attributed it to pleural pain, which I do get, but YOU DON’T IGNORE CHEST PAIN IN A PATIENT WHO CAN’T BREATHE.

Incidentally, these are the same symptoms of babesia, but I don’t have fever…so it may be stress cardiomyopathy, but did anyone check for that?  Nope.  Because as soon as I said “Lyme,” they changed their view of me.

So yeah, I’m a bit angry.

I also got a call today from yet another bill collector.  I have no money, I was “voluntarily released” from my job because I can’t get out of bed most days except for very basic needs, and writing cohesive thoughts wears me out.  I know I’ve said that before, but it does.  It’s exhausting.

I can’t sing, any more.  It’s not a lack of ability, but a lack of air and stamina.  One thing keeping me kind of sane, and it’s gone.  Yesterday, I got through 1 verse of “The Cave” by Mumford and Sons (one of our standards), and felt like someone was squeezing my chest, and I got severe chest pains.  They subsided after I reclined and took a break, but…no more singing.

I was promised help by someone (which would have helped them, in return), and they backed out at the last minute.  I’ve risked my life for this person.  Cue chest pain.

My student loans are going into default, and the rep on the phone that I answered, today, was so rude she was actually threatening.  Guess what happened after that call?  Chest pain.

My blood pressure has remained around 95/60, with only my pulse varying.  At night, my pulse goes down to the low 50s.  Somehow, this isn’t striking anyone as odd.  My oxsat is 100%, so what’s the issue?  What is my heart doing?  Why am I technically getting enough oxygen, but feeling the need to make deep, gusty sighs every few minutes just to feel like I’m getting any air?  Why does my heart feel funny?  I’m lowering my thyroid med dose, because I know that could affect things, but other than that…what else can I do?  (Lowering the thyroid meds will lower my body temp, lower my metabolism, and basically not change a damned thing from how it was before I started taking them, except that I may gain back a few pounds, and I’ve been at a plateau, so I don’t give a crap.)

I take more muscle relaxers for what feels like anxiety, and my BP goes lower, and I risk coma.  Literally, all I can do is sit here, occasionally lift things with my arms and legs while laying down to keep my muscles from atrophying, and then spend 20 minutes recovering from that little bit of exertion by sounding like I just got jump-scared.

I dreamed that I died on the operating table last night.  I woke up with completely neutral feelings about it.  That scares me.  Not feeling anything when you’ve dreamed of dying during an upcoming (and feared) procedure?  ABNORMAL.

As it is, I can’t afford the surgery, anyway (literally everything donated up to this week has gone to the LAST surgery, because people keep submitting claims at the last minute), so one question just keeps popping up in my mind:

“WHY?”

I mean, there has to be a reason, right?

There’s no “why is this happening to me” because I know that – it’s because I got bitten by a tick.  I don’t mean “a reason” as in, a purpose for this pain that I’m going through.  I mean a “reason” as in, the consequences of what I’m going through could be avoided if only one or two things were different.

That’s honestly what kills me about this.  MS, cancer, HIV…those would be considered serious.  Lyme?  Hah.  No biggie, apparently, even though it’s rendered me infertile, has caused brain swelling, and has taken away one of the things most dear to me:  my voice.

I’m sorry I can’t be more positive.  My 30th birthday is coming up in two weeks, and all I want is to feel normal for one day.

And I’ll leave you with a link, and a quote, from my favorite childhood movie, that perfectly encapsulates how I feel right now:  http://youtu.be/gC2MDCdzfHI?t=58s  (Embedding was disabled by request, otherwise I’d just stick it in the entry, itself.)

If you don’t want to click the link, it’s from “The Last Unicorn,” and it’s just after she’s been turned into a human to save her from being captured.

Unicorn/Amalthea:  ”I can feel this body DYING all around me!”

Schmendrick:  ”But…it’s only for a little while.”

Only for a little while.  ”Little” is subjective.  I’m only in month 2 of a projected 24 months of treatment, and I already just want to disappear.

(I took my BP after making this entry:  92/55, pulse 79.  That’s…okay.  That, I can live with.  Much lower pulse, though, and…well…I mean, I don’t understand why this isn’t a concern.)

 

4 comments to Lyme Journal. Not a happy one, sorry.

  • MattB

    Squeaky: Any chance you might be suffering from respiratory alkalosis? My partners going thru something sort of similar, and thats the current diagnosis.
    Something to think about anyways :)

    MattB

    • My GP checked that out, and I’m showing no signs of too little CO2 in my blood. They tested that at the ER, as well, I believe. Thanks for the thought and the comment, though, and I hope your partner feels better, soon!

  • I can’t find words that could possibly make things any better. Medically you probably have all the advice from all quarters you want.

    But know there are a lot of folks that wish they could make it better, that care about you.