Monday was the big day, I got my powerline (central line port) implanted and got my 1st dose of antibiotics. It was one of the longest days of my life. We were supposed to leave the house at 430am but thanks to me moving slowly and my anxiety in high gear, we didn’t get leave till 445am. We still made it to the hospital on time. I needed to be there at 7am and we arrived at around 630. I’ll admit I was pretty cranky. Nothing to eat or drink after midnight and NO smoking. I know I need to quit but I had been planning to quit after the port was implanted (we’ll get to that later on.) I had only gotten about 4 hours of broken sleep and to start the day I was running on fumes.
I will say the staff at George Washington Hospital was pretty awesome and made things much easier. There was someone within ear shot at all times, if not right by your side. They explained everything very well (without freaking you out.) The port was implanted (took about an hour for the actual procedure. Recovery wasn’t long (conscious sedation-twilight sleep) and I was pretty much pain free at the site after surgery. After a couple of hours the bandage on my clavicle really started pulling and eventually I ended up with multiple blisters surrounding it (I am extremely sensitive to all bandages.) Later in the day at my doctor’s office and throughout the evening things got worse-it felt like when I fractured my clavicle. Its been sore for the last couple days and I’m still trying to adjust to the port (I’ll post pics in a little while.) The port itself really isn’t that bad and (the bandaging makes it look worse than it actually is.) I’m sure in no time I will forget its there.
After the Powerline was implanted we headed over to my doctor’s office (hoping to get in as early as possible to avoid traffic on the way home.) At the office we were taught everything about the line (how it works, how to use it, how to change the dressing, how to maintain the line properly) and how to mix the medicine that I’ll be dosing on and how to handle everything at home. It was pretty easy for me (even in my state of exhaustion combined with all my regular meds) mostly because I’ve hooked up IVs more times than I can count and my mom did very well picking it up. I did my first test dose of the antibiotics in the office to make sure that I wouldn’t have any type of reaction.
After all was said and done we headed home. By the time we got there I’m pretty sure that I have never been that tired in all my life. My mom said I was making no sense at all. I slept (with the exception of having to wake up to take my nightly meds) about 14 hours. I couldn’t tell you the last time that happened!
Day 2: 1st day of full dosing
Tuesday was my 1st full day of day of dosing on the antibiotics. I’m supposed to do them 10-12 hours apart. We decided on 8am and 8pm. Treatment takes about 30 minutes. Not too bad. This month I will be dosing every Tuesday, Thursday and Saturday. More medications get added in over the course of the next 4 weeks. On the days that I’m not dosing I’m supposed to do a full bag of lactated ringers (I’m writing this while I’m getting my ringers.)
After the 1st dose on Tuesday, I got a little sick (lower tummy troubles which got progressively worse throughout the rest of the day and after the 2nd dose escalated even more. At this moment I feel pretty horrible. I have hardly any energy, I’m lightheaded and dizzy and week. (My BP this morning was 87/59, I usually run low anyway but that low for me.) I’m being forced to quit smoking. Yes, I know it is the best thing I can do for my health but it sucks. My last crutch. Everything else, including not being able to leave my own home (except for medical appointments.) I feel like I’m a prisoner in my own home and in my own body. I feel like this disease and all of its co infections have taken over and I’m just a shell that’s dying from the inside out. Everything I do if affected by this. Its changed my personality and how I interact with people. I hate it! I despise it! I want it gone today, not 9+ months from now (not that it will ever really be gone completely.) I don’t even get comfort food. I’ve been mostly Paleo for the last 5 months but now I cannot under any circumstances have Gluten, Dairy and/or Sugar.
I had 2 of my best friends visit yesterday and while I was so glad to see them it also broke my heart a little. I can’t relate to them the way I used to. I don’t have anything to talk about other than my health and I’m tired of talking about that. From day one I did not was this disease to become me and while I try hard to fight against it, it seems to be taking over. Its not that my friends and I can’t talk about work (they do and I can relate somewhat, but again its just another reminder of something else Lyme took from me,) I feel like I can’t bring anything to the table and that unto itself is depressing. I hate bitching and moaning and complaining, especially all the time. Its why most people never knew how sick I really was, I didn’t show it and I really didn’t talk in depth about it. I wasn’t and am still NOT looking for pity. This is a shitty thing that happened to me through no fault of my own and I just have to grin an bear it.
Sorry that I’m not more positive today. Maybe I need to sit in front of my inspiration board and try to cheer myself up. Or maybe I just need to crawl back in bed and sleep as much as I can. I don’t know. I did find out too, that this is “supposed” to be an “easy” month to prepare me for what’s to come. I’m already feeling like crap after one full day of dosing, I don’t even want to think about the upcoming months.