Okay, so it’s been 3 months since I last blogged. And I didn’t fulfill my promise to tell you when my chair came. Here comes the excuses, or as I like to call it, “a new blog to bring you up to date”.
Wheelchair first. It was delivered to me (first mistake) in January. It was supposed to go to Western Rehab, so that the tech would come out with the chair to my house, make sure everything was set for me–arm height, foot rest position, joy stick, etc. But it wasn’t…it came straight to my house, delivered by the (duh) delivery driver, who didn’t have a freakin’ clue about the chair, let alone the knowledge to adjust it. It had no seat. Really. Just a flat piece of steel, bolted to the rest of the chair. Theoretically (as I was told later), this is because the back of the chair folds down forwards, so that I can get it into the car. I put the gel pad (that the VA had given me several months earlier to go with the scooter) onto the steel platform and climbed into the chair.
Not really, of course I have to get out, to use the bathroom and go to bed. But I do sit in it all day, everyday, and use it to get around in the house. It makes a huge difference, letting me store up the energy I’d have spent in walking (to the kitchen, to the potty) and use that for other things, like cooking dinner. The chair is PURPLE!!!!! (And those of you who know me, know that this is all that’s really important. Right?) It has a lift–and when the chair is in the highest position, I am taller than when I stand up. I had the joystick put on the left (many years of playing console games had trained me for a left hand manipulation of same). The chair can actually go pretty damned fast. I keep it on the very lowest speed almost all of the time. I only turn it up about 2 more notches when I’m going down the street and it’s a straight shot. (BTW, that “light” shining on the side? Is the reflector, reflecting the flash.)
I am using the individual leg rests instead of the central platform for my feet. I can raise the leg rests to a comfortable position. The platform requires me to put my feet further back than the knees are located, which is not only not comfortable, it is damned UNcomfortable. Overall length is still shorter than the mobility scooter.
I eventually got the “real” pad for the chair. I have had the bracket installed that lets me have a safety flag flying overhead when I’m out. Oh yeah…out. I can go all by myself to the drug store, about 1/2 a mile away, or to the grocery store, down the block and across the street. ALL BY MYSELF!! Wowwee! So far I’m about 5 for 5 in getting into trouble when I go out in the chair. I’ve run it off the sidewalk pretty much every time–one time, I got axle-deep in mulch and couldn’t get out by myself. Two angels came over and lifted the chair back up on the sidewalk. In fact, each time I have needed help, angels have arrived. Have I mentioned just how much I love Eureka?
The tech from Western Rehab (Brian) is working on my desk for the chair. (He’s having to modify the one that was ordered; it was NOT workable as it was for my chair.) The tech from Broadway Medical, the people who are contracted to install lifts for the VA came over on Tuesday and spent 4 hours trying to get the lift pieces installed on the chair and then get the chair into the van. It fits, but just barely. It needs some minor tweaking–the crane’s arm needs to be lifted about an inch, shortened about an inch and the base raised about an inch, all of which will make the chair lift up high enough to be much easier to just push into the van. The biggest problem is getting it over the bump of the bumper. Beloved helped the guy grunt it into the vehicle twice, but everybody knows that he cannot do that by himself–and I cannot help him. So we’ve got to get the lift perfected. I will be doing some research to see if I can find an organization who will feel sorry enough for me to provide a “real” wheelchair-sized van. (The VA will pay for the cost of the modification, like putting on a lift.)
I am so very glad, and very grateful to the VA, for my wheelchair. It makes such a difference, even Beloved has commented on it. We are both a bit exasperated by not being able to put it in the car yet, but even as it is, is better than not having it. I still have to walk into the bathroom–no way in hell to ride the chair into there, and into the office, ditto no way in hell. Otherwise…it works great. I have a variety of reachers and grabbers to get things out of arm’s length.
I am still waiting for the ramp for the house, to get the chair in and out with a little more grace than I do right now. I can hump it over the threshold, but going out, I feel like I’m going to fall on my face with the chair on top of me. Coming home requires a bit of a “running start” and having the power up a couple of notches to have the “oomph” to get back into the house. A ramp will be nice.
Other excitement: I have applied for Social Security Disability for the second time, from the beginning step. Again. And they have already refused me. Apparently they have come to the conclusion that I can go back to work again. WTF? So I immediately requested a Reconsideration — which meant filling out the application form again. This time, I also filled out the Adult Function form, which in 6 pages explains why I just cannot go back to work, idiots. My lawyer from the first unsuccessful attempt is with me again…
And right after I got the news of denial and restarted the SSDI paperwork, I got the annual (you know, every 9 months or so) request from my Long Term Disability Insurance company, wanting to know if I’m STILL disabled. Same paperwork as SSDI, different forms so of course it’s not as easy as cut’n’paste from one to the other. BUT I R a smrt kitty, S M R T. I retained a copy of the annual report from 2013 (don’t ask me what’s happened to the ones in between) that I could just update with how much more pitiful I have gotten. The SSDI forms have gone to the lawyer, so that his office can mail them in and the LTD form has been emailed to the agent handling my case. I am DONE with forms. I have been having MAJOR anxiety with these hanging over my head. Now, everything I can do, is done. I can only wait for answers and they will either be “yes” or “no” and I will deal with any “no” answers when they get here. My stomach is already MUCH calmer and happier.
Anxiety is not a diet I would recommend.
Meanwhile…I am working with my primary care doctor to determine if I have myalgic encephelomyelitis. (ME, usually written as ME/CFS, where “CFS” means Chronic Fatigue Syndrome”). I see the Occupational Therapist sometime in the next couple of weeks to have a function evaluation. I have an appointment with a (ha, “a”, more like THE) neurosurgeon the first week in April to evaluate my neck and what we might be able to do with it. (He’s the only neurosurgeon in this area.) I’m hoping that he can also maybe do some neurological diagnosing of neurological problems…if not, then I will have to (oh dear gods and Dread Cthulhu…) make the fekking trip 5 hours down (and back) to the VA hospital in San Fran. The only neurologist I can see is down there. There is NO neurologist here in Eureka. So we’re talking 10 hours in a vehicle, staying over night because there is no way at all that I can go, have my appointment and then get back in the vehicle and come home. Beloved will not go with me; I will be taken in the VA shuttle bus/van. I will have to figure out how to carry all the things I will need on me and my wheelchair. I will not go to SF until I can get the wheelchair in the van because that’s how I need to get the chair to the Clinic to get on the shuttle. Oh, and all of this for what is probably a 15, MAYBE 30 minute appointment. Even if it’s an hour, the cost in my time, effort and subsequent PAIN is only worth it for the diagnoses of neurological disabilities I (may) have.
If I do end up going, I had better come home with a nice list of diagnoses that explain a lot of my symptoms: tremors in my hands; the whole body shaking I do if I stand for more than 10 minutes; the loss of concentration, memory issues, and so on. I will take all of the medical evidence I can get, to get Social Security paying me and the LTD people to leave me the fuck alone.
I also need to figure out how to explain to both of them that the reason my medical records don’t say, “she can’t walk, can’t stand, has panic attacks, hurts, hurts, hurts, has disturbed sleep” and so on is that *this* is my norm. Your doctor doesn’t write “patient is healthy, doing well, can walk, stand, has no pain” every time you see them. All that gets written is the changes in the norm and any new problem/s. Sigh.
Other than that, how was the play, Mrs. Lincoln?
The weather has been cold and wet, which has added to the “blahs” of having to deal with paperwork that will determine if I have to go back to work or not. (My doctor and I were talking about this and she said to me, “But what kind of work can you do?” Ummmm duh. I can’t.
Anyway, Beloved and I have both been ass-dragging for the past…12 weeks? Something like that. (He had a doctor’s appointment today and has lost 20 pounds in 6 weeks. And his blood sugar, which is what they were checking today, is back down to normal, not elevated into the “better start picking out which test strips you want” level. YAY for him!!)
I have been doing some writing for Medium.com. There’s a larger audience possible there, and so far, I seem to be well received. I have also finished my college course about Ancient Egypt (Penn State) and am now doing “Buddhism and Modern Psychology” (Princeton). I may have told you about this before, but I don’t remember, so here it is (again): There is a website called “coursera.org”, which offers literally hundreds of courses–for FREE, if you don’t care about the credit hours. You can get a completion certificate (credit hours) for about $49 per course. (Some courses have a different pricing because there are multiple classes in a “specialty” curriculum.) There are many schools that participate. The good part about not paying for it is that if you cannot finish the class, you are not out any money. It’s all computer based, so far I’ve only seen video lectures as how the information is taught. Ancient Egypt had a short quiz at the end of each week’s lecture. Buddhism etc has a midterm essay, which was done last week, and there will be a final essay in 3 more weeks. Total class time is 6 weeks. When I’m done with this, I’ll pick out another one. At some point, I may feel able to take 2 or 3 classes at the same time. But until then…one at a time is just fine.
So I’m over 2000 words and I’m running out of steam. Rather than throwing more coal on the first, I’m gonna stop this here and let you get back to your own life. Nice talking to you, I’ll try not to be so long til the next post!