I woke up this morning to a shocking surprise which led to a cascade of events and ultimately here.
That's cascading down, and not like a pretty waterfall. Like down to hell
It started with the discovery that my catheter, insert it into a super pubic tube hole had fallen out. A S.P is a hole in your lower abdomen Which recedes into your bladder, they give it to quadriplegics because it reduces the chance of UTIs. Which, I chronically suffered from beforehand. With the old - in your Pee Hole system - bacteria from, what have you, Accidental defecation or urination, sweat, anything really, is much more likely to reach your PP and crawl their way into your bladder. it also rips your, well you know, man parts apart. This ultimately ended in a three day 106 fever and near sepsis. Since, I got the SP tube I have had many less UTI’s.
But, the problems do continue. There is a sticky device called a stat lock which prevents the tube from ripping out of your stomach. And of course, Medicaid doesn’t cover the size that I need. So I have to buy them online and they also don’t have the size that I need. Which led me to installing the device incorrectly. Incorrectly, yes but it was effective. It worked in a way which would keep my inside inside.
Unfortunately last night this device failed and the tube popped out. We tried desperately to reinsert it but we couldn’t. Imagine that, standing over me with a silicone Foley in hand. Then inserting it into my abdomen to feel around randomly inside my body in search of a hole.
Fast forward an hour and my mother and I are on the highway. In my accessible vehicle. Sounds great right? Just head on to the doctor and get it fixed up. Well because of the state of disrepair in which my wheelchair currently resides, I am no longer able to lock into the safety mechanism. So, if you go around the bend I’ll go flying into the back of the van. I’ve been trying to get this wheelchair fixed for three months. As anybody who has experience will tell you Medicaid would rather save a dollar to spend 3,000,000.
. Rewind to the day before. My mother brings the van to Smithtown Bussani mobility to get the issue resolved. I cannot go because I will slide all over the car, and while I know how to install lock down ties my mother does not. Nor do we have a go to person to call in if-such a situation arise.
She returns, the van is unfixed, the persisting issue is that my wheelchair is so shot that it can no longer-effectively slide into the locking mechanism. The wheels are worn, see attached pictures, the armrests are falling apart and the headrest is, well, an issue. Plus more, go look, pictures
So essentially we waited two weeks for nothing. The scheduled appointment was a dead end. Not to mention that I have been waiting three months forSome progress on my wheelchair repair order. Take a look at the van, because the wheels are bald I have worn a hole into the floor making things worse. In the early stages of this situation I found that if I rammed the chair into the mechanism it would occasionally lock in. This scenario included a lot of wheel spinning and that lovely burning plastic smell we all know so well. Not only that but the bottom of the front bumper is about to rip off.
And trust me, I am not slacking when it comes to keeping up on these issues. I push and push and push and I push more but. I seem to be pushing, fruitlessly, against an unmovable force. Which I neither comprehend or avoid. My wheelchair is still falling apart. And so is my van. All of these issues are interrelated and, as I can see it, All because of Medicaid, bureaucracy and a government which would rather instill fear in the disabled then help. I can go on about this for a very long time but The subject matter will make me stray from the point of this post..
But- wait wait, real quick. In fact! the only help I received since I've been injured has come from you guys. There are a ton of Government Programs created to relieve such issues, in theory. But in actual practice it is a maze so complicated 2 ½ Years later I'm still inside of it. And the maze seems to perpetually surprise me with unpleasant and unexpected surprises. Like the time I lost my a home care coverage for three weeks. I was supposed to be getting more coverage but that did not happen Anyway. Look at the attached picture, my beard has grown long and I've grown old. Well it is no shave November. But I can go into excruciating detail on the various, and when I say various- there is a plethora of government programs I have tried which failed me. You can ask me, I would love to tell you. It's rarely spoken of because it is so depressing i keep these details to myself in order not to bum people out.
Anyway, I've been navigating the system by myself for quite some time and let me tell you! it's either impossible or I'm terrible at it. But, Back to the issue at hand.
I got the Wheelchair quote, which is attached. Go to check it out. It's about $2700 to fix my wheelchair. If you look at the quote I put the items I cannot do without in blue. Orange is The color representing surprise, these items seem unnecessarIly expensive.
Which is why I am asking you for help. Please fix my wheelchair. Please fix my van. Donate. Every time I go off the pavement I get stuck, and if there's no one around I stay stuck. I can no longer go on leisurely drives or emergency excursions. I have dutifully done my part in trying to resolve these on my own but cannot. As I stand(sit), In reference to my previous life I am now just a small man in a very big system. One that does not care about you. As you are a number. A Statistic To be observed and threatened. There are no warm gentle hugs when it comes to these things.
In defense of the government, there are so many people leeching off of the system. Yes yes, they're out there. on the front porch. Rocking chair and all, Mountain Dew in one hand. Slowly sipping away at that diabetes juice while the Marlboro smokes in the other. ButI am not one of those people. I'm actually disabled, I need the parking spot. And do you know what I can do without? The a nerving feeling Given to me as a citizen of the United States that I am doing something wrong, and will be chastised, audited and punished. I was never given a social worker, the lawyers had no answers in fact they stole a $1200 deposit on me. with a mild tone of blackmail. I contacted this person because I want to work, I want to pay taxes I want to be normal again.
I don't know how, I don't know what the legality of it. Any benefits received are the sole result of you being at national poverty level. Any income received, is by default due in full to the government. With promise of reprise if not received. This is true, but as I mentioned before there are many programs and fucking what have you, loopholes which allow you to continue on as normal. I placed my trust this lawyer AND because I fall into A category which would require more time than a lawyer would like, she did a very easy thing for a lawyer to do. Fucked me.
Now I must ask you!!! fellow American citizen, is it truly unfair for a severely disabled person to receive some government assistance while also attempting to work? If I'm not in my wheelchair I'm pretty much as able to move as a Beached whale. Without assistance I'm left out naked in the cold. And don't get me started on the state of home care, it is a program which is vital to those in need but does not work as it stands. What so ever. Why can I not find the way into the promised insurance allowing me to work AND get some benefits? Why is there no one just, automatically assigned in assisting me discovering these answers?. They patched me up and sent me out on my way. They paid for a few weeks of physical therapy which was so kind, Eye roles. And they even paid for a taxi to get home. And then when I got home I didn't have anything there was no resources, no easy answers, The situation is just ludicrous for a first world nation! America!, foremost!! to have these issues.