So… Its been a LONG freaking time since I last posted… Seems like forever.
Things have been kind of “meh” lately… A lot has happened in the last couple of months, though aside from doing things for my etsy store I don’t feel like I’m getting much done.
I have gotten my second rejection from SSA so I can do something else about that now, like getting a lawyer and filing for a hearing. In other news… Since my primary care doctor, and pretty much everyone else I have seen don’t seem to listen to me, I’m going to try again with a neurologist. I’m certainly not going back to the previous practice where I was literally told “there’s nothing wrong with you”
I clearly have SOMETHING wrong with me that is slowly getting worse. What, precisely I couldn’t tell you. I seem to think for myself that it could be MS, ALS, SMA or some other alphabet soup disorder… I do have all the symptoms for any of those 3, or the aforementioned rare disease called Myalgic Encephalomelytis (if I managed to spell that correct) the problem my PCP has is that although my symptoms are consistent in locality, they are not nessicarily consistent in severity.
For example, my left arm and leg have a significant loss of function- yet some days I can move just a little better than others. There are times where my left hand is essentially as useless as a limp noodle… Same goes for my left leg. Day to day it is extremely difficult to perform any fine motor functions with my left hand, such as picking up small objects, turning a key in a lock, or working a TV remote. Extreme temperature also seems to affect my overall function level, for example, too much heat(even just from minor exertion) can cause a nearly immediately effect of “extreme fatigue” fortunate for me, this kind of fatigue is relieved by getting cool and relaxing for a while. This is the sort of thing that prevents me from working for the man.
I don’t have the mental acuity needed to run a cash register, or use a computer for work related things… if you fuck up on the clock, it goes on your record… Belive me- that’s how I got fired from FedEx Express.
This brings me to the next topic, if I can’t re enter the workforce, then I have to get Disability if I ever want to support myself again. Yet I can’t seem to get those morons to listen to me either. What the he’ll am I supposed to do when both my primary care doc and the social security administration isn’t FUCKING listening when I explain what’s going on??
I really need someone to help me with it, someone who will actually drive the point home that, I am too crippled to work 40 hours a week, week after week, month after month. I don’t just have a physical disability, I have multiple mental disabilities as well!! Lets put it this way… Even if I was to go back to work, how many days could I be expected to show up and actually be productive? There are days were I am just so mentally wiped that I end up sleeping off and on for extended periods of time, why? Because I can’t even process the things going on on TV or in whatever book I’m reading. More often than that, I am simply not functioning well enough to leave my room, let alone try to think about anything serious. You know your brain is wiped when you can’t process enough to play a video game, let alone try to function as a working member of society.
I’m not like Joe Schmoe who was injured in some accident that left him paralyzed- my problem is in the brain and nerves themselves!! *Note- I’m not saying people with traumatic SCI can’t have the same issues that I do with mental processes, just most of the paraplegic folks I personally know- which is quite a few- are still able to work at least part time because their mental faculties are still intact.
A perfect example of my inability to work, as those who have read very early posts on my blog will know, I once ran a flea market booth. I had to give it up because I got to where I couldn’t do it anymore, and guess what? I couldn’t even be there to take the stuff out after I closed it- and someone else had to do it alone.
So… That’s why weekends suck when you can’t work.
You are constantly being reminded that you are not working by the fact that every day is a day off… And after a long enough time, all of that not working gets FUCKING boring. I am one of those who actually likes to work, I enjoyed my jobs, for the most part. The other thing about weekends is- no one is open. Well unless they are a retail place… For instance, lawyer offices, doctors and the social security administration are all closed on the weekend. I get to thinking, oh I need to mail some shit, and I need to drop by SSA office, I need to call that lawyer back or I need to make a Dr appt… Then I realize, “Oh shit, IT’S A FUCKING SATURDAY!!!” At least on Sunday you can say, “oh, I can take care of that tomorrow… ” Don’t even get me started on 3 day weekends.
I guess it kinda goes back to the whole brain drain thing I was griping about earlier in this post… It takes me an exponentially longer time to do simple things versus people with conditions similar to mine. I have a friend who has ME who I used to playfully joke that she was a “turtle” when it came to trying to accomplish anything. I now feel like a turtle myself. I joke that it feels like trying to drive the autobahn stuck in first gear… But hey, at least I’m still moving, right??
Ciao for now!!