Archive of ‘Lyme rant’ category

Story to Nowhere

It went something like this.

Honestly, I had just shut my eyes and slept for half and hour when my mom was rushing me to get up. 8:00. Prompt. Some asshole decided to test the fire alarms at 9 in the effin morning. I mean really. There are so many college kids here. Now pissed college kids I’m sure. They told us in advance which is nice, as last time they didn’t and I was way more pissed. We went out for breakfast which makes a nice change of scenery. I need that every now and then, to keep me sane. Or to keep me from becoming more insane. Either way, it doesn’t matter whether I sit in a chair all day and watch movies and try and read or go out and live a little. I feel the same really. Maybe a little more tired, a little more sore, but at least I feel like I’m not letting this get to me. 
I like that. Feeling in control. 
I am determined to not let this get to me. I’m  determined not to be run-over by Lyme again and again. I don’t want to bend my life around the fact that some damn tick took a ‘lil nibble.
It’s nice to let myself forget that I’m sick…that I’m so dependent now on the people I love. 
I try and forget, but when my mom hands me a Dixie cup full of pills, it all comes rushing back. Rather quickly. It’s strange what the prospect of a meal of pills can do to someone. I have a aquarium patterned cup sitting in the crook of my arm and when I move, I’m reminded that I could start a pharmacy. Its a nice rattle. Like gold clanking in pockets, or the sound a diamond makes when it slides across the table, or that horrible sound of expensive glass shattering, the pills sounded expensive. It was their cost, their true ‘cost’ on me though that would make them priceless. I hear that in less flowery words. 
I have lately been hearing things in a lot less flowery words.
But it seems that this extended story of my day has only ended up in the same place that it has ended everyday. In the same ways. Me shakily picking up a fork and eating dinner voraciously, all the while thinking I’m about to toss it back up. (I have a weakness for nausea and through all this I haven’t learned to ignore it properly if you can believe it!) With me rushing through a few chapters of a book or minutes of a movie before it’s time for my IV. Then during the IV wait time, sitting gingerly in a chair, giving my left arm the cold shoulder in vain, usually watching a movie or talking. Then, and this is the worst part of all, I go to bed. Or a least I sit up, sometimes close to 8 hours, waiting for sleep to come and the hallucinations and pain to go away. I wait in vain. So I think the time away.
Or I think, then time takes it away.

Poolside Lessons

Isn’t it just another day in paradise? I could hardly agree. Paradise is soo lost right now. Milton and I know only too well. 

Welcome to my today, tomorrow, now and yesterday.

Wake, eat, sleep, repeat. The rest of the details are a little shaky to say the least. Its rather odd living for the past 5 minutes. For me I’m still in June, practically sitting outside myself. Actually, yesterday (to me), I was in ER with a high fever, not knowing what I was sick with. I would expect to find the fresh IV and needle scars in my arm, but this is almost October not June, the warm summer has been traded for cool breezes, deepening red leaves, and the occasional temptation of warmth and humidity in the air. 
Not going to lie, but today is not exactly my best of days. It feels like a truck with endless tires ran me down with a vengeance. I feel like at least my ribs are cracked, or broken, but they’re fine. My joints are SO swollen when I close my eyes, but on closer inspection they look normal. I know something is eating through me steadily, but have just not breached the surface. I feel almost positive that there will be nothing left in me for scans and tests ‘cept a heart that is still trudging on. Everyone keeps urging it on with love and hope. I follow suit and eat hope for breakfast. And snacks. Frequent snacks. 
I’m not meaning to sound cold or whiny. I’m so fed up. And so let down. I am loosing more faith in the health institution day by day. A little more knowledge, a little less pride and some insane luck and I could be back home, visiting my friends when I wanted a cheer-up. Who knows if I would have been on my way to recovery a full 6 months or so ago had I been diagnosed. Who really knows? I’m not sure of anything. 
I would settle for a mundane existence right now. I want to go to the mall and drink bubble tea and laugh. I want the freedom to do what I will. I would settle for walking. I love these legs and they ain’t working so hard no more. And I’m pissed. And so ready for a stroll through the park one day. 
Martin Luther King wrote in 1963 that “The ultimate measure of a man is not where he stands in moments of comfort but where he stands at times of challenge and controversy.” Where do I stand? I’m not exactly living it up, but standing in the murky waters of Lyme where it is both a challenge to live with and a controversy to be able to be treated to live without it. I live in a tidal pool of confusion, pulled across continents and into different medical offices and constantly swimming, not sinking. Good thing too, cause I’m not as good as I might be on surviving underwater. 
I swim. I swum. I’m swimming. I will be swimming. For a long time.
PS: Thank you to all those who throw me a lifesaver when I go overboard and fish me back out from the deep constantly. You pick me up selflessly and I don’t deserve that kind of love. But know I love you more in return. Keep fishing. When I get better, I will swim with you. 
“What makes the desert beautiful is that somewhere it hides a well.”
~ Antoine de Saint-Exupery  ~
%d bloggers like this: