What a strange week it has been, and long appointments to go with it. I did all my preregistration for surgery on with CDH on Wednesday and that just bums me out because we have to go over EVERYTHING, and when you start to list all the problems you have all at once, it gets very overwhelming & depressing. But, all lab work and stuff needed to be done before surgery is taken care of. I still am completely nervous about surgery and sorta have had mini meltdowns about it. Sheesh. I will know more details of the time and run down of things on Monday, but as of now surgery is tentatively slotted to start at 7:30am, meaning we need to be at CDH at 4:30/5:00ish!! Yikes! I saw wound care today and they gave the nasty wound a two thumbs up... So here we go surgery, time to close up the knee...
I had my infusion on Thursday and it only took two tries for the IV, yay! I do SO much better on these days thanks to a 25min IV Bendarly drip before I get the Actemra. Granted the Bendarly sorta knocks me out for most of the day, I don't rarely have any side effects any more!
I saw Dr Rhew (rheumatology) on Thursday as well. I am so thankful that she really takes her time with me, listens and is very thorough with things. We are thrilled that my RA markers have remained stable the last two months, making it now four months in a row! We are NOT thankful for the "secondary problems" that we have to deal with bc things are calm... The bones in both of my wrists have slightly shifted. My knees both have arthritic changes to them. My right knee the replaced one just keeps getting worse - loose kneecap, IT Band problems, and scar tissue, a lot of this because I have to really rely on it bc of how bad the left knee has been. There was obliviously a LOT we talked and discussed, overall we are pleased, it's just hard because well I have a incurable destructive disease that is just attacking my body.
If you see me anytime soon, you'll notice my rosey cheeks and tannish skin. Well, I get sun SOOO easily because of a combination of side effects from medicine making me sensitive to sun but also mainly bc of my Addison's Disease. Now it make look nice but it hurts, and really really dries out my skin, and is sensitive. And finding sunscreen and lotion that don't burn or sting is quite a problem! I also need to be careful not only because of sun sensitivity but also I can bet dehydrated SUPER fast bc of the Addison's too. Like abnormally fast. So, just one more thing I'm trying to balance among everything else.
I also got thrush AGAIN this week. UGH. I have gotten this sooooo many times. It's rather unpleasant and such a pain. I usually get when I'm on both a antibiotic and prednisone - which I am because of oral surgery. Thankfully the oral medicine and nystatin swish & swallow help clear it up fast. I'm just worried its gonna get cleard up, and then next week ill get it again bc ill be back on antibiotic from knee surgery.
On top of all the crap I've had some really nice things, I went to Lunch with a friend who I use to work with, I started tutoring the little girl I tutored last year, a friend fixed/changed my brake pads for me, and someone is coming to clean my house for me tomorrow. This weekend we throwing my younger sister a baby shower, so my sister and her kids from Fort Wayne,IN are in town so hopefully well have some fun family time.
One day at a time...
. Thanks for supporting and loving me on this journey!
Mandy
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