Seriously.
Why?!
Good news is, I have an appointment setup to see a neurologist that specializes in neuromuscular disorders but works in an office with other neurologists that specialize in other things like MS and vascular neurology.
The bad news is, the earliest appointment is for February 26th. But better than never.
Good thing I have plenty of Tramadol and metaxalone.
Today was my Reformer for Recovery Pilates class. We started by doing a few gentle squats. When I say a few, I mean three or four. Gentle means a very shallow squat, just as far as is comfortable, and no added weight at all. I did one just fine. Then every single other one had my quadriceps (thigh muscles) burning. We weren’t holding them, we were just dipping down and straightening up. The muscles were only burning when I was in the squat position. I was barely squatting. As soon as I’d stand up, the burning would stop. The burn is EXTREMELY intense, and makes me want to collapse; pushing through the pain is almost impossible.
This photo shows me squatting (I took it just for this post) about the same I did in class. I may be a little lower than I was in class, actually. And yes, getting this photo burned really badly again, but I am currently on 1/2 a Tramadol and a full metaxalone so it wasn’t as intense. As you can see, these aren’t shouldn’t be very taxing squats.
I’d like some feedback about my dysautonomia design for Zazzle. I want to make more products, and I’d like to make some more designs. I’d also like to make some for general chronic/rare illnesses and fibro. I’m not super fantastic at designing, but I’d like to get better, so practice is necessary!
Can you tell me what is good about this design, or what may need tweaking? What kind of things do you think I could do to make the other designs I’d like to market? What kinds of colors should I do for general chronic or rare illness awareness designs? What other products should I offer this design, or other designs, on?
I don’t believe in failure
Cause I know the smallest voices, they can make it major-from “Seven Years” by Lukas Graham-
I heard this song for the first time today. I was in the car, driving home from school. This song is a really good song, with a unique beat and beautiful, heartfelt lyrics. The DJ had compared it to the “100 Years” by Five for Fighting. I wouldn’t put it quite at the same level, but it’s very similar in a lot of ways. But this specific quote really struck me at the time. I just watched the video a second time and didn’t notice it as clearly. Obviously, it was one of those things I really needed to notice at the time.
I just got back from my Monday appointment with Joleen. I finally decided, after the scary emotional swings this weekend, to fully disclose the full pain in my arm (I hadn’t really been hiding it consciously, I think I was mostly lying to myself). There were several episodes this weekend where the pain in my arm got so bad it pushed me to tears.
After talking with Joleen, and explaining everything, she seemed worried. I don’t like when my doctors get nervous. But, she is right. Normally, when my body randomly acts up, it just takes a few weeks to get it back into sync again. My arm pain came out of no where. I didn’t do anything, and it suddenly was killing me. We’ve been stretching my nerves, trying to release the tension, and rubbing out the knots for several weeks… and we haven’t made any progress.
If anything, I seem to be slowly getting worse…
I’ve had some really bizarre emotional things going on today. Physically, I’m not doing too well either, but that is due to the weather suddenly shifting again (I hope).
I guess we’ll start at the beginning.
Me skiing at Beaver Creek.
We wanted to go skiing today. My arm has been killing me, and last night it randomly got really bad, pushing me to tears several times. No idea why, because I’ve been doing what I’m supposed to (exercise wise). We set an alarm for 5:45am (to get up there by the time the lifts opened), but we also had the condition of “we’ll see how you feel” (meaning how I felt, Dan said it). At 5:45, Dan asks how I’m feeling, so I had to lay there and force myself awake long enough to do a self assessment. Then I moved and pain shot through my arm. Not good. I told Dan and we decided not to go skiing.
That, as it turns out, was a phenomenal decision…
As any Chronic will tell you, holding down a regular job can be almost impossible. Unfortunately, we’ll also tell you that medical bills add up scary fast (at least, those of us that live in the US, I can’t speak for other countries). Isn’t that a pretty puzzle? Getting disability pay can be almost impossible, especially if you aren’t qualified as “disabled” but just can’t hold down a job without pushing yourself into that category.
Just pile them on folks!
My body just can’t handle work. I worked in retail for a few years, prior to most of my diagnoses, and ended up getting plantar fasciitis so badly that I couldn’t walk without crutches and excruciating pain. I worked reception at a vet office, only to discover that even with the proper shoes the plantar fasciitis sucked AND my allergies decided to put my immune system on “emergency plane crash” mode. I went back to my retail job, and thankfully didn’t have too many issues with my plantar fasciitis. I also nannied, which were crazy long hours and way more spoons than I wanted to use in one day (I was doing the retail and nannying at the same time, so I was probably working over full time). Finally, Dan said, “Stop hurting yourself” and I felt like I was allowed to stop.
I went to see a high-risk obstetrician today for a preconception consultation. I AM NOT PREGNANT!!! ⇐ Just needed to throw that on there so people wouldn’t freak out 😛
Why did I go see the high-risk OB? Because of my POTS.
Someday, and someday hopefully fairly soon, I want to be a mother. To me, this is not an optional part of my life. I have wanted to be a mother more than anything for as long as I can remember. I would play house with my friends, and always be the mother (or father, since I was so tall). The only thing I know for sure that I need for myself out of this life is to be a mother and loving wife.
Yesterday, was a lot of fun! Exhausting, but definitely worth it 🙂
First, we did restorative yoga. Over the course of an hour, we only did about 6 positions, holding each one for quite some time. Apparently, it’s supposed to be good for fibromyalgia sufferers because of the use of props and such (according to The Chopra Center). 
Unfortunately, my body didn’t seem to like it much. I think it’s because my body hates staying in one position for very long, and that always aggravates my fibro. It was, however, good for my P.O.T.S since it was all done lying down and there was no physical exertion. Well, I was having to spend a lot of physical and mental energy relaxing the muscles that my body refused to relax (new ones would tense up during poses and so it was a constant game of tag around the muscles). It was nice, however, because being on the floor and using all of the props made some positions a lot easier. I just wish my body was okay with holding positions for long periods of time. I’m definitely feeling it today.
Saturday (today) is a bachelorette party for a friend of mine. We’re going to be doing restorative yoga, dinner, then Picasso and Wine (do a guided painting and you can get a drink while you do it if you want). It should be a lot of fun!
Finding Life's Silver Sun 