Tuesday, June 27, 2017
Jack also cut out several old, crappy trees and expanded the cleared area, which you can't really seee here. We intend to plant another apple tree and possibly a plum and cherry.
Thank you for all the kind comments in the last post. I wanted to respond here to a couple of the last ones made, so to be sure they would be seen. And also, please, please note this: my blog is set so that all comments made after 3 days of the post publishing, must be moderated by me. I have to physically post them. Blogger does NOT always tell me when some people comment. I don't know why. So....I don't always know that I a comment has been left unless I go to the blog dashboard and check specifically for that. I forget to do this frequently because not a lot goes on here anymore. I recently discovered a comment from last year!! that I never knew about and never published! I would never skip a comment on purpose (unless the person was just being a total and complete, useless ass in their comment), so if this ever happens, please know it is not on purpose. My memory is just not what it was and sometimes I forget to look.
Since March the doctor has had me trying a couple of different meds and dosage amounts etc. and it's had me all over the place at times. But that's just natural. They have to try lots of different things for each person to find the right combo. Anyway, he doubled my dose of Mirapex lately and I had a very bad reaction to that and went I dropped back down to my low dose it seemed to throw me in a another horrible direction! It was quite unpleasant. So, after wrangling around with the cost of another drug (there was no way I could begin to afford it) he put me on a very, very low dose of Sinemet. This is actually helping a lot and I feel much better. I still have a lot of pain and stiffness but the brain fog is better and just feeling more like doing things and with a better outlook. My skin has cleared up great and doesn't hurt all the time and I can swallow food easily now.
Tammy asked about a support group and I have looked into that. Unfortunately, there is only one anywhere around me and that's at UAB, of course. On a good day... UAB is at least 45 minutes away, usually 50-60 minutes, so that's not really something that would work well. I still don't often feel "clear" or "on" enough to drive in Birmingham traffic. If you've ever been or lived here you'll know what I mean! lol! So. I did find a good online support group though, that I like very much and is very helpful. So, that allows me some contact with folks that truly understand my condition. They are very encouraging and a lot of them have some pretty wicked sense of humor, so it's fun.
So, that's part of what's going on. Hopefully I will be back soon with some more activity!! I hope you all are enjoying your summer!!
Thursday, June 08, 2017
Anybody still out there??!!!
I went to back to my neurologist on Monday and he wants to up my Mirapex dosage to see if it doesn't help this brain fog and stuff a bit more. I'm also having a great deal of trouble with my right side and right shoulder. Everything on that side has just become so stiff that I am having trouble functioning with some things. I have a lot of difficulty washing my hair, getting dressed etc. because I can't raise my right arm very much. So, went back yesterday and had an MRI and X-rays just to rule out an injury. I don't think it's any kind of injury because when it started I felt so bad I generally didn't do crap around here. Hard to injure yourself laying on the couch.
So, I am really still struggling with many things. A lot of it is emotional. Parkinson's is a very, very difficult diagnosis to accept. It's especially hard when you feel so alone. It's a scary disease and no one wants to hear about it or talk abut it. If they even believe you have it to begin with. You want to tell people what's going on with you; why you're so slow, why you're hurting so much, why you are having trouble talking...but then, you figure maybe it's best to keep your mouth shut because you know they are judging you the whole time if you don't act like that person on TV that has Parkinson's acts. Frustration is rampant. I feel like I'm stuck in Groundhog Day. Except every day I have to get up, do my exercises, run until I just can't anymore, just to get my brain to pump out enough dopamine to get my head clear enough to understand what I'm doing for the day and maybe have enough energy to do it. Then I go to bed exhausted and it all resets itself during my sleep. Lather, rinse, repeat. Over and over.
And it's only me to cheer myself on, to pat myself on the back when I do pretty good for the day, when I fight back and don't just totally succumb to the whole shittiness of this condition. I post a few photos on Facebook so that 2 or 3 people can tell me I'm doing okay. That maybe I'm not falling so far behind that I'll never catch up. But it actually helps. A kind word goes a long way, even if it's not in real time. You take what you can get, ya know?
I will improve. I will get better. I will finish my house and I will have a happy, productive life. There's a season for everything I guess....as the ol' saying goes.