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.

Groovy Colored Pills!!

The ceiling is not all rough, so I can’t pick shapes out of the sky. There are no little holes in the ceiling, or grooves, like a doctors office, so I can’t count dots. I can’t connect them either. This makes late night ceiling meditation difficult and too boring. Obviously! 

My joints are going through a I-am-so-pissed-at-you-I-am-going-to-make-your-life-hellish faze. Swollen knees makes it so hard to walk, that when I get up in the night, I usually crawl to where ever I need to go, so I don’t fall and rearrange my face. Hard choice: dignity or bruises. I’m valuing them both more and more. 
I started a new drug. I have no idea what it’s called but it’s a little red pill and tastes icky. I think (but I could be dancing on the moon) that this is for the Bartonella in my brain, which-take it from me!-is some nasty shit. Bartonella is a co-infection of lyme and is contracted the same way, the bite of a tick. Ew. It causes fatigue, restlessness, anger problems, pain, liver and spleen problems, abdominal pain, granulomatous hepatitis (swollen tissue mass). One to six weeks after its ‘established’, Bartonella can present various (and serious) neurological symptoms. And oh golly, oh lucky me, I got some!! Lyme doctors say that it causes my frequent blackouts, ‘intense’ short term memory loss and long term patchy memories, speech loss problems, deep pain on the soles of my feet, hallucinations, blinding headaches, cognitive dysfunction, seizures and involuntary body motions. Bartonella can also cause rashes, loss of vision,  osteomyelitis (bone marrow inflamation), osteolytic lesions (softening of the bone, arthritis , endocarditis (swelling of the heart wall), and cardiomegaly (enlargement of the heart). The ‘co-infections’, to me cause me the worst bother of all, and make treating just ‘Lyme’, more complicated. I have 2 co-infections, Babesia and Bartonella on top of Lyme, which unfortunately is quite common. And that is quite enough technical nonsense for one moment. 
In short, Bartonella, is ICKY! And I personally think it deserves just as much hate as Lyme 😀 !
Anyways…I painted my nails pink to match my LIME GREEN toes. It was practically HOT here today!! I understand about those CRAZY people in Ontario who wear sundresses when its 36 F. Because it has been cold for so long that 55 F practically is HOT! Isn’t it strange how quickly we change?