I’ve had a pretty busy couple of weeks. I think I had something like 9 doctors’ appointments in 5 days, not including Physical Therapy!
♥ Doctor Visits ♥
Primary Care Physician- who seemed to be a bitoverwhelmed by my massive amount of ‘history.’
She recommended I see a Psychiatrist once or twice, to check in with my medications and that I’m dealing with all these life changes alright— which I saw him today– I am! I passed the psych test I guess, he was a nice guy. Graduated OVER 50 years ago, so he really knows what he’s doing. I also saw my favorite (closest human comparison I could make of him is to Einstein- with maintained hair).
Neurologist- productive, scheduled 3x more plasmapheresis treatments scheduled 1x month until April. Hopefully that will kick all those evil auto-immune antibodies out of me!
Dentist-if that counts, which it does, because I was there from 11-5.
I went in for what I guess I was a scheduled 'check up' /how's your lupus/ hows your paralyzed leg working out appointment. It went so well. He is a jack of all trades I swear. I mentioned to him my knee had been sore on my 'hurt' leg, and he says "Well yes, there's f
luid in it Rebecca." So he pulled out a big turkey baster needle, swabbed it with some iodine, and jammed it in my knee a few inches.
It really wasn't that bad. I was amazed he was pulling synnovial fluid out of my knee, massaging the fluid out into the syringe a bit. I believe he said it was 5cc's (or mL's?) which was significant, but he's seen way worse. Heck, I didn't even know it was in there to take out so I'm good with a drop coming out- because my knee doesn't hurt anymore!!! (for now). I guess it is arthritis- but not the old age type, the lupus type.
SO Yeah, I definitely wasn't expecting that today...but it was awesome. He said normally you want less than like LESS that 0.1 cc's in there, so it definitely wanted out. (End result--> little bandaid -->swelling gone, and no pain!) Wow. The things this man pulls out of his 'hat'....he's amazing. I wonder what I'll get next time! Hehe.
AND!!!! HE decreased my prednisone steroids another 10mg down to 40mg!!!! That will be officially HALF of what I started at!!Woohoo- GOODBYE chipmunk face. (Here's a pic tonight--MILD malar rash ("BUTTERFLY RASH"), in case people want to see symptoms. This is the minimum it ever appears, I can't even feel it at this level. One day I'll try to grab a comparison ''severe picture" just for those of you who are interested in seeing it.)
Physical Therapy. So, other than all those doctors, I got my KAFO Hydraulic $9000 [of insurance money ] brace back again today from the hydraulics screw cracking over the weekend. They fixed the screw but need to order a new hydraulic system for it so I will have to give it back to the Custom Orthotics man- Mike, once more at the end of the week BUT THEN it should be fixed for good, and I’m going to be running like Forrest Gump in no time!!! (without the breaking the brace, and much pinker).—–
It also happen to have re-acquired my bronchitis [ Supposedly I gave my parents the virus while I was sick---> they suffered through it a few days ---> then I got it back I guess.] Being so immuno-compromised with the chemotherapy, prednisone steroids, etc I guess this sick-er thing is to be expected. But I managed to avoid being admitted to the the hospital this time, other than the x-rays Dr. Huppert had me magically admitted and xrayed on MLK day at 5pm in the Hospital across the street- which turned out well- no pnuemonia. I am just back on another run of bactrum antibiotics… and IF HE LETS ME/thinks I’m well enough, I will be allowed to get my chemotherapy on Thursday morning. He really had a problem with my cough. But my lungs are just loud and seal-bark sounding I guess. Sorry :/
- I also want to start expanding my blog- if that’s even possible. I would like to add a section for:
- Recipes and Cooking with Lupus
- Lupus facts/awareness <– You know, the things they don’t tell you in the books. In short sentences.
- An awareness group??
Perhaps I can make pages…? (Like different sections of my blog?- gosh I’m so new at this! Teach me!
- ANND I read a blog where a girl did something called ’30 days of Truth List’ where each day was a different question/topic. (credit: http://hope.gr/30-days-of-truth) I thought it was an interesting continual read each day, and could provide a lot of introspection. SOO I’m going to do that. Maybe starting tomorrow, since I just noticed it is 4am….I need to pretend to sleep and then maybe I really will!!!—————
But before I go, while I’m on randomness, two things….
1) I want to start my own (possibly join) a Lupus Awareness Group to get the word out there. I really want to be active and involved. People just don’t know enough about it. And the more info about it out there, the more research that can be done, and the more about the disease can be understood. So if anyone has any ideas about starting some sort of foundation or non-profit? or just some other kind of group. I supposed I’d design a website, a logo, and tshirts, and information, as well as an open forum.
♦♦♦ Sounds like- and will be a lot of work- so anyone with any ideas or suggestions- please THROW them at me! ♦♦♦
2) Completely random side note—I just started drinking this Body By Vi shake (powder drink mixed with milk, or substitute in one of those shakey blender bottles) which literally tastes like cake and it gives you basically all the nutrients you ever need (from foods) if you have a hard time eating healthy enough (like me) and I am in LOVE with the shakes. So much so I’m considering selling them. It’s one of those pyramid things, but it’s not a scheme… so I’m actually considering it. Otherwise I highly recommend you try it!!! OMG It’s amazing. I will do a post about it in a day or two, like a little advertisement I suppose. It’s amazing, seriously. You WILL be hearing more about it soon!!!!!
February is going to be a big month for me. I feel lots of productivity coming on. It’ll take work, but come on- work is good for you!!!!
Have a great night/day/morning everyone!!!