Archive of ‘IV’ category

Starting Again

I feel like I’ve medically travelled backwards, and I’m on my first few weeks of IV meds, in Connecticut in the fall of 2008. Thank god I’m not as sick as I was back then (high-five for me for having no seizures or black outs! life is so much less exciting now for everyone else around me hahaha). Every drop of medication makes my head hurt and my chest have this weird feeling kind of like heart-burn, if heart-burn was in your literal heart. I know I’m slurring and tripping over words, the wrong phrases mix themselves together and every now and again the wrong fiddle comes out of my ear (fiddle…word….ear…mouth, same difference! work with me here.). I continually make simple errors, and cannot understand some sentences. I’m dropping out and tuning out (and I’m not even on those kinds of drugs!). I even sent out the complete wrong size DryPRO PICC protector (a cover for your IV line when showering) to a customer, which I still feel dreadful about.

In the past, when I’ve been on the IV drugs and the rest of my brain was acting like melting cheeze, it corresponded to a serious drop in my energy level. So I’d be loony and unable to focus, and stuck on the proverbial couch. Not so this time. Is it all the spirulina I’ve been taking? Maybe. Wait, no, it’d better be, because that stuff don’t taste the best if ya know what I mean. I’m not sure, but I’ve still been acting moderately peppy, even though I haven’t been sleeping well, and have been really busy. Meeting with friends, going for walks (or sojourns into nature involving me being pushed around), knitting, sewing, music, repeat. I’ve been making a sweater for my amazing Mama in luscious red Organic cotton.  A touch of lace, a touch of shaping, my raglan design…all the makings of a fantastic garment!

We’ve been planning the last minute details to our trip to Ottawa too. We’ll be meeting with as many MP’s as will see us, so I’ll be needing all my stores of peppiness in the coming weeks. Hopefully, we’ll be able to convince the MP’s we meet to vote ‘Yes!’ with a capital Y and an exclamation point on Elizabeth May’s private members bill on creating a “National Lyme Disease Strategy“. My fellow Canadians, have you talked to your MP about voting ‘yes’? I urge you to share your story (or the story of a friend/family member with Lyme disease) with your MP’s and make it clear to them that you support this bill, and change on this issue. There are undoubtably constituents in every riding across the country with Lyme disease, and if just a fraction of us visit our MP’s and even more people write to their Members of Parliament, we’ll be well on our way to creating change for all Canadians, present and future, battling Lyme Disease.

Droplets

It’s surprising how just the smell of alcohol swabs, the taste of saline in my mouth, is enough to make me scared. Not scared of the actual infusion of a 1/4 dose of minocycline. What makes me feel ill before the medication actually is even hooked up to me is the knowledge that in hours, or days I am going to be feeling terrible. Or if this tiny dose doesn’t do much to make me herx (ie: all my symptoms will get infinitely worse because of the toxins released from the bacteria dying in my body), when we increase it to 1/2 a dose, and work our way over a few weeks, or a month to a full dose…well, then I will start to feel lousy.

It is really, really easy to get used to not doing IV meds. Because when you are on them, you feel terrible and ill all the time, and when you go off them, you do go downhill a little, but gradually. It’s nothing like this burning pain that started up in my chest 5 minutes ago. And we’ve only dripped in about 1/8 of the 1/4 dose I will be doing tonight.

I only was infusing for less than a minute before I could feel the cold hands of the drug sizzle out through the end of my peripherally-inserted-central-catheter into my heart. The best way I can describe it is it feel like heartburn, but literally in your heart. It feels like butterflies flapping around the cage of your abdomen, but instead in your rib cage. It is a cold feeling that seeps over you, kind of like what I imagine it feels like when those humans in the ‘Invasion of the Body Snatchers’ get taken over. This feel creeps over you and then suddenly it’s all around you, all in your lungs and your head and your heart and you feel like you can’t get enough air. It makes me want to cough until I can clear my lungs, but that won’t happen. You can’t get out what you’ve put into your veins. Only your organs can filter it out as best they can.

On the bright side, I only have to infuse ever 3 days or something like that. So basically when infusing, it feels scary and painful, and after that I just have to wait for my worst symptoms to peak. Easy peasy. Beats an IV every day!

You know what makes infusions fly by? The Halifax Comedy Fest. And coconut ice cream, with frozen raspberrys and chocolate chips. Pick your chocolate covered poision and put it together with your favorite CBC show, and basically that’s the making of a fantastic evening. And I can trick myself into thinking this ‘invisible’ clear fluid isn’t all over my body, trickling under my skin.

It is going to be fine. It will be fine. It was fine before. I can do this again. That’s what I need to remember.

I can keep doing this until I’m better or at least until the world runs out of Coconut Bliss ice cream. ~

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