We went to ER the other day, so they could fix my PICC line, which had a tiny crack in it. Once it gets ‘compromised’, you are at risk of infection, which doesn’t sound like too much fun to me. We waited in ER for close to 7 hours, waiting, waiting, waiting (I read ALOT) until finally we were able to see a physician. Ironically, it was the same physician who I saw in the summer when I had a really really high fever, the night I lost my memory. It was like a kick in the gut of recognition seeing him, but also I realized that this doctor would be just as unhelpful now and then. And, if you can believe it, his knowledge of Lyme disease had not increased over the year and a half since I’d discussed it with him. He told us, after all that waiting, that they simply could remove the line, but couldn’t put another one in, because no physician would take responsibility for it. But I can’t blame them; putting in a PICC line for a Lyme patient would be like waving the Red Flag in front of the giant, charging IDSA bull. For all the discomfort involved in putting IN the line, it didn’t hurt at all to get it pulled. Well, no complaints about less pain!
Unfortunately, that means that we have to get the line put back in, in order for me to start my IV treatment again. Unfortunately, that means going to California to get it put in, the closest doctor to do that kind of work for a Lyme patient. Doubly unfortunately, I think I am going to have a ‘PORT’ put in. The world alone makes my stomach tighten and my heart quicken at the thought. If you don’t know what a port is, I will try and describe it to you, although I probably won’t do it justice *rolls eyes*. It is a small “bubble” (well I think it kinda looks like a drum, or a push-button, but thats just semantics) inserted UNDER the skin, usually on the right side, under the collar bone. And then a line is fed into the vein. Basically. It is a little minor surgery, which all and all doesn’t sound too bad. The part that I find unappealing is the part that involves puncturing the “bubble” with a needle (gulp) and injecting the ‘stuff’ into you. This is the little snag. You see, just thinking and typing words like ‘puncture’ and ‘needles’ or ever ‘stuff’ makes me woozy. My head gets hots, and I feel a small trembling in my arms and legs, and I feel faint. So you can feel why the idea of a port, scares me. Yup, totally terrified of the idea. Yuck. Yick. Yeulch. So we’ll wait and see. We’re going to California next week to do ‘this’. So wish me luck.
A few days ago, I had a little get-together for my birthday. I’d call it a party, only it was just for 2 hours, and there was very little ‘party activities’ involved. I had so much fun, but it was so exhausting, embarrassingly so. Pathetic. We sat in a circle (well a kidney shape really…once you get past kindergarden, ‘circles’ get more and more wacky shaped, I find) and we had pasta and cake and just talked and laughed…it was so nice to have all of those wonderful people in the same room. I miss them so much, I miss our old life; its like a physical pain sometimes.
Today was okay. Again I’m so tired. I don’t remember a time before brushing my teeth was exhausting, a time before eating was difficult, and a time before playing the piano would make me want to take a nap. I’m sure there was a time like that, only its too far back in my memories.
I went to SIDES today to talk with my teacher about my school stuff. She’s so nice, and made the work real fun! We worked out a whole bunch of differnt ways for me to do the assignments, taking into account the ‘Lyme Factor’. lol.
A friend I’ve known forever (and havent seen in forever!), Pelle, came to visit me too. I was super tired, but still managed to laugh and have fun! It’s nice to have people visiting, it cheers me up and makes me feel alot more normal!
I’m too tired to write any more….
Today is just lovely. Its like 30C (80F) here and a wee bit humid, but warm enough for hsorts anda tank top. My cousins’ lying on the dock getting her ‘daily dose of skin cancer’ (her words, not mine!), and I wish I was suntanning too, but the drugs make you photosensitive (burn ridiculously easy).
I’m super sleepy today, but its probably the warm weather. I’m also so tired of sitting, I wish I could get up and run around all over the place. I get so bored of doing nothing, but ironically there is so much to do but I have no energy to do it with. How very annoying. I wish the pain would go away…it takes half my brain to consciously block out a tiny bit of it. I am so sick of being sick, honestly. And I totally want to get home. Now. I just want to get on a plane and go home. Not like it isn’t pretty here, but east, west, home is best.
Well this week has been okay. I feel extra specially bad for no good reason, which is always a treat.
Saw an endocrinologist. Hopefully if I see him enough I may be able to pronounce his name. Apparently my thyroid meds are a good choice and he sent me for some ‘gasp’ blood work, which I have yet to do. Yeah. Blah blah blah. He was real nice though! Thats always welcome! And the best part of endocrinology is that its mostly questions and blood work! No painful prodding necessary- a bonus!
We had Thai appetizers after (my fav!). Satay, and spring rolls and curry puffs!
I did my own dressing change today! It looks very neat and tidy and no ickyness ie) blood, puss, infection, blood (did I mention that?). It kinda hurts though. In my chest is where I feel it. Its kinda like there’s a little stone in my chest and its poking me from inside. Its not comfy. I’m so tired I think I’m falling asleep as we speak.
I think it is also time to publicly (oh isn’t that official) announce that I am moving to Ontario at the end of this month. I’m going to stay with my aunt in uncle (oh…and big cuz, I forgot! Love you!) a few hours outside of Toronto. They live on this gorgeous lake so I’m totally stoked. I just wish it was home! But its a start I guess!