Wednesday I looked at my alarm on my phone and it was another 2 hour going off in my ear and never hearing it kind of morning. I was really tired, but I hustled through my day to get everything I needed done.
I ate a little something, took my supplements and my “off antibiotic week” antibiotic. Thank god I tolerate it so well. I am a little concerned my tummy isn’t going to be a fan for the next few weeks to come and I am really starting to not tolerate anything nausea wise anymore. Oh well. Marinol is in my fridge, Dave is here to pick up some Chinese food to calm my nausea down. Maybe another juice cleanse or two needs to be preordered for some detox. My lord some taste terrible but I find it to be so beneficial. Detox and some extra nutrition.
My pain was a lot better, which leads me to believe Dr J is a smart guy.. well, I knew that anyway, but it is amazing having a doctor that has seen it all and really knows what he is doing.
At the end of the night however, I felt my tongue and underneath it to be having issues again. It is either more toxicity or oral thrush again. It was another night that my hand decided to do “the claw”, and there is never anything I can do to stop it. Warm water seems to loosen it up some, but my body just does what it wants to. Happy happy joy joy.
But… the pain was better! I will take it!
Thursday was my dressing change day. I had planned to go to work before to dub on some tax work, but I slept so late it wasn’t worth coming in until later in the afternoon, which I really hate doing since I generally function a bit better in the earlier afternoon.
When I got my dressing change, H. always checks to make sure I get a blood draw. Nope. Not happening. Crap. I would have to go in on Monday to get it declotted if I couldn’t get it to fork in the next few days. It takes some time, since I had this done when I had my PICC, I think on month 4, so I guess on month 7 with my power line really isn’t too shabby. At least the hospital has good food! AND they have Italian ice which is so delicious. Dave kept sneaking it into me after my gallbladder surgery last year and I couldn’t eat solid foods.
I went to work as soon as I was done my dressing change, and after awhile I was getting really wiped out and started my usual stuttering again. I had to look through some papers that were in the basement, and I was completely out of breath and had to sit down. I really hope this whole out of breath thing will go away someday. I used to work my butt off at the gym and was pretty active, and never had an issue. I wonder how and when I can start being more active. It might be a little too early now, but hoping soon. Couch time is really getting old.
I did a lactated ringer on full boar when I got home, in hopes to get my line to get a draw, and it did the trick! Yayyy! I would be checking it again over the weekend, but I think it will be alright. I like to keep out of the hospital as much as possible. Going through my paperwork last year I had been to the hospital well over 60 times. ER, surgery, bloodwork, cardiologist and neuro appointments, ultrasounds, and dressing changes. That is the life of a Lymie. Oy.
My legs were bugging me at night, so I kept them elevated while laying on the couch. It was another SVU marathon night with Dave until he went to bed, and then Killer Kids on Lifetime.
I am really happy that although we don’t say a whole lot to each other after he gets home, he sits with me and spends the time with me. Just being there. He was playing around on the computer, looking at seats for me for his mud truck online, although I think he knows deep down realistically I will probably be missing out on yet another summer of wheeling. I just can’t be stuck in the woods if I start to get really symptomatic or work myself into a seizure.
Sometimes things hit me like a ton of bricks. A good day can change really darn fast, especially if you overdo it. At least going out to dinner, we can just pick up and go if I start to feel really sick. Most of the time it is the lighting that sets me off at restaurants. I would feel kind of foolish wearing sunglasses in a restaurant though. LOL Going home immediately just doesn’t work if you are stuck on rocks in the middle of nowhere. Maybe a small trip in my future? He already told me I wasn’t allowed on his motorcycle this year because of safety, which makes me really sad although I know it’s true, but I would like to make a short trip down the road to where there are beautiful lake and mountain views, and blueberries to pick in the late spring. Gluten free blueberry pancakes will be happening. 🙂