Voted Today, Sidewalks Are Still An Issue

      Went to vote today, yay democracy! Went by myself out amongst the humans, so I was 4 wheelin  through the streets of Perry Hall. Not a bad trip, about 1 1/2 miles, I can do that with my eyes closed. The county put in all new curb cuts on my route to the shopping center, unfortunately I vote in the opposite direction. 

So this was what was waiting for me on one side of the street, not exactly wheelchair friendly. No biggie, I'll just cross the street and find a driveway I can go up.  

 

  Couldn't go down the front  of  the school, no cuts. It's 2022, how can a public school not have accessible sidewalks? Am I the only  person who needs them? Am I the only person that goes out? Damn discouraging  is what it is. 

The Bathroom Will Be The Death of Me

      What is the best way to get in and out of the shower? How about on and off of the toilet? I cannot believe I need to ask it, but here we are. I honestly don't know the answers anymore, PT and OT have been to the house, no answers from them. Shower seat and toilet seat are both about 6" lower than my ride, doesn't sound like much, Everest to me. Anything? Any tricks I haven't thought of? Actually considering a stoma to take care of the bathroom part, already have the suprapubic catheter for part of it, why not the boxed set. Am I to be destined to sponge baths for eternity, live the rest of my life in seclusion? 

    PT and OT don't seem to understand hemiplegia? They tell me, grab here, push this foot, scoot over, they don't realize my scooting days have passed me by. I can't be the only person they see with these issues? I'm being told Medicare won't pay for an overhead lift system, a Hoyer lift won't get the job done, not without major restorations to our home. Just got a quote for the overhead system, $20,000, say what? That's not going to happen, retired since 1996, not a lot of disposable income at our casa currently. If you see me out I'll be the guy in the corner looking miserable and smelling badly, wait, I forgot, I don't go out anymore. 

Set Myself on Fire, Transfer Trouble, Farmers Life For Me

    So I'm not digging some of the things going on in my world, for starters on March 26th I set myself on fire. Heating something up in the microwave from Wendy's in the bag I didn't realize it was in a foil lined wrapper. The bag caught fire, I took it out and promptly dropped it on my footrest, instant bbq!

I can't control my right leg, so I couldn't get it out of the way. It just burned! 2nd degree burns, multiple trips to the wound care clinic, I still have a pad on it, without it every time I have a cramp it rubs up against the pad and the new shin rubs off, fun. 

    My days of transferring have just about come to an end. the shower and the toilet have become my arch enemies. The toilet I can still do, providing my body gives me enough warning to get there, but the shower is another story. I sit there and stare, I only need to lift up a few inches, but it may as well be a few feet, ain't happening. We are looking into a ceiling lift, what a procedure it is for that.  Trying to figure out if Medicare pays for any of it, so far no straight answers  

    Something I am digging are my new garden boxes. The men from church put them together, even filled them for me. I now how 2  4'x8'  raised boxes, 5 potato bags, and 5 tomato plants in self watering tubs. We just harvested swiss chard, I can't wait for the rest!

Sidewalks Are Not My Friend

     Have you ever really taken a good look at the sidewalks? I never really paid that much attention to them, at least not until I was in a wheelchair. If something was in my way, whether it be a broken up section, an uneven transition between pads, or a lack of curb cuts at intersections, it didn't catch my eye. It does now.


    

I am in a battle right now with Baltimore County. I am trying to convince them that trying to transverse the sidewalks is a dangerous proposition, so far I haven't had any luck. I live in a residential neighborhood with average traffic flow. Because the sidewalks are in such bad shape I tend to travel in the roadway, taking my time and being aware of my circumstances. Two things I am looking for, a curb cut at the middle school, at the back of the parking lot, and two curb cuts that are at the end of streets that dead end into another road. The county school board has told me that there is no money in the budget for the curb cut at the middle school. Furthermore they have stated that it would not be safe for me to travel through the parking lot because there are no sidewalks to travel on. I find it ironic that this is the same parking lot that the children walk in on their way to school. The county also told me that they are unable to put sidewalk cuts at non-four-way intersections.

     

    

    The county put in pretty new cuts at four-way stop signs in my neighborhood, this is what you encounter not 50 feet down from one of those new intersection cuts. I have asked my County Councilman on a few occasions to come meet me and take a walk through the neighborhood so he can see the obstacles that stand in my way. So far he hasn't accepted my invitation.

Vans Coming Out My Ears

    It was about 10 years ago that I first started looking for a handicap accessible van. I received a break, something I'm not used to. A guy that was hired after I left work had an accessible van that he couldn't get rid of, he offered it to me for free! He had tried to donated to different organizations but they wouldn't take it because of its age. The van is a 1987 Chevy full-size cargo van, it has a Ricon rear entry lift. When I first received it I was still able to transfer into the drivers seat and drive the van myself. As the years went by it got harder and harder to transfer into the drivers seat, until about three years ago when I had to stop attempting it. I still had to transfer from the wheelchair to the seat in the van because the roof isn't high enough for me to stay in my wheelchair. I am now to the point that transferring to a different seat has become too difficult, in fact in the last few weeks the fire department has had to come twice to get me out of the van. It is really a shame, the wife and I really like this van, however the transfer has become a dealbreaker.

    We began a search for new van, one that would let me stay in the wheelchair eliminating the transfer, we thought we found it. I located a 2002 Ford conversion van hightop, already handicap accessible. I knew because of the weight of my wheelchair, and the weight of myself that the lift in this van probably wouldn't work. The lift is a 600 pound capacity and my wheelchair weighs 450 pounds by itself. I spoke with the company that does the van conversions in my area and was told that it would be no problem since there was already a lift in the van, just a matter of swapping them out. Not true. So now I have two vans, one that I can get into but not use, another that I could use if I could only get into it. 

    My cousin passed away in December, he wasn't sick, it was a construction accident. In lieu of flowers his family asked the donations went to a go fund me page in hopes that enough money would be raised for me to get a new van, it was. I tried to figure out a way to make the old van work, I bought another van in hopes of making that work, it was time to buy the van that fit my needs and was ready to go. What we came up with was a $35,000 Toyota sienna, it has a power fold-down lift and you can remove the front seat which allows me to sit up front, something I haven't done in a few years. Now my driveway looks like a handicap accessible van dealership! The next job on the horizon is to sell the other two vans. 

    I'd like to take this opportunity to thank my cousin Kevin who showed an interest in how hard it was for me to transfer in the van after the last time we saw each other in October. I'd also like to thank his family who in their time of grief and loss thought of me. It will forever be appreciated 

How Did I Get Here?

     Been away for a while, was thinking I'd give it a go again. I had one of those days that convinces me there is a hell. In the fall I finally got my suprapubic catheter put in, today was my day to get a new one put in. I have to do that every month, it usually goes smoothly, not so much today. The young woman was fairly new and although I am sure she knows what she's doing, she failed to hit the mark today. She made repeated attempts to get it in but had to call in a more experienced person to get it done. In the end the  task was accomplished and I went on my merry way, but not before going 12 rounds George Foreman.

    So now it's time to go home. We make our way to our trusty '87 Chevy van, the one that was given to us and has worked perfectly... Until now. The van still runs great, the problem is I have to transfer from the wheelchair to the seat, something that's getting harder to do and some days impossible. Today was one of those impossible days. We got home and when it became time to get out of the seat and back into the chair I was so weak from the ordeal of the catheter change that I could not make the transfer. I had to swallow my pride yet again and call the fire department to come aid with the transfer, something that is happening far too many times recently for my liking.

    How did I get here, going once a month to have a new catheter inserted, having to rely on the fire department to get out of the vehicle or off of the floor? I understand the concept of end stage, but can I really be there? Urinating in bag and seatbelted to a wheelchair to prevent falls? Not quite what I envisioned for my life, but then do any of us really know where were going to end up? At least I got a doughnut yesterday and was able to eat it before the fire department came, so I've got that going for me.

     Surgery is postponed  indefinitely due to the coronavirus. I'm bummed out, but better safe than sorry. Going today for a new Foley catheter, had to take the last one out on Friday,  it was clogged. No traffic anywhere, it's really weird. empty parking lots at restaurants,

Assisted Suicide and Multiple Sclerosis

     We had the talk, the one you dread having, but one people like me need to have. It starts with a quote, remember when you said you would support whatever decision I made on the final disposition of this illness...q the tears. The wife supports me, just doesn't want to go yet. I have said from the very beginning I'd only let this progress so far before I put an end to things.  Not on the doorstep of that place, but I am pulling up to the curb. Everything is an effort, and with that effort comes a good amount of pain. When the time comes I choose to exit on my own terms.

Foley Catheter is a Pain in the Neck, Actually the Pain is a Little Lower.

     I have a small cut on the back of  my pate from my tumble, a little sore,  but I will survive. Did I mention how much I dislike the foley catheter? I've had one since about Halloween, it's made a huge difference, it's just so damn uncomfortable. I'm actually looking forward  to the suprapubic catheter surgery,  how sad is that?

     Riddle me this? Paraplegia, paralysis of the legs and lower body, typically caused by spinal injury or disease.

Quadriplegia, paralysis of all four limbs. 

What do call it when you can't use your right arm and leg? I  call it screwed! 

1. 
   

   
   
2. 
   

Major Depression, Don't Want to Play Anymore

     Major depression day, I've got the blues,  big time. I have days that I can't believe my life is where it is, just can't shake it. All sorts of things run through my mind. How much longer can I keep this up? What happens when I can no longer transfer? It's coming,  don't know what I can do to stem the tide? Don't  know how much longer I want to  fight it? When is it time to embrace the beast, just let it go? It's a good thing I don't have a machine that could be  unplugged, not today.

Leg Shaking Made Me Fall on the Floor While Transferring Into Bed

     Took a little tumble transferring into bed tonight,  I got that leg quivering thing going on and that was all she wrote. Had the crew from the fire station here, again, to lift me up off the floor, my hat is off to them. Time to get a transfer board, can't keep depending on the lads to lift me up. It takes a chunk out of my soul everytime this happens, no reason to think it's going to get easier. Now to figure out a new toy, always something to do.

Moving on From Facebook, suprapubic Catheter Time

     I'm thinking about dropping Facebook? I've enjoyed it, but its run its course for me, it doesn't make me feel good anymore. I'm happy that my friends have succeeded in their lives, its getting hard to to be outwardly joyful about their trips, or vacation homes. I will never do those things. I'll never buy a new truck, or fix up an old one. I'll never lay on the beach in some exotic country. I'll never travel much further than to one of my many doctors appointments. Facebook has become a daily reminder of the things that could have been,  but will never be, therefore I choose to look the other way.

     Speaking of doctors appointments,  I have surgery on March 19th, having a suprapubic catheter inserted. I had been doing the self catheters for a while,  but getting harder to do one handed. The foley gets the job done, but it's not without side effects. I was scheduled a few weeks ago,  had to cancel because of blood sugar,  yay me. The sugar is under control now, so f

Abscess Time

     Recovering from an abscess,  not a pleasant experience anywhere,  this one took unpleasant to new heights! The abscess was at the base of my testicles. Yes, the base of my testicles. I'll wait for the guys to finish squirming and the women  chortling, he said testicles. ok, the doctor thinks it was an irritation from the catheter tub, the constant rubbing. In 24 hours it went from the size of a grape to the size of a lemon. The doctor velcro'd my ankles into stirrups, the nurse held "things" out of the way, and the cutting began. The incision was large enough that the doctor stuck his finger in the hole to clean it out,  he and the nurse will definitely be getting Christmas cards next year, that's how close we are now. Now we have weeks of packing the wound, trips to the doctor's office,  good thing is I don't need to stay in bed.