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!

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! 

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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

Everything Is a Chore

     Things have been hard, haven’t been here in a few. I vaguely remember when things were easier, like taking a shower, jump in, jump out. Now they have to be planned. It won’t be long until I sit on a stool outside and they squirt me down like a circus elephant. About 2 weeks ago I started with a buzzing in my left hand, the good one. I remember what that meant for the right one, not happy about it. We will figure it out, no choice, the beast has taken so much, I was hoping it would leave me some scraps. I guess not.

Strength to Go Out

     I’ve got a dentist appointment today, fun day out amongst the humans. It will take every ounce of energy I have for this. I need to do some research, what happens next? What happens when I can no longer gather enough strength to get to the dentist? I go to the doctors too. I see people there with caregivers, usually a woman, where do they come from? I really don’t want that. It’s really no fun living your life in the what if lane, it’s even worse in the when lane. It’s raining now, that will make it easier! See, when you are having a bad day there is always a chance it will get worse!

Forcing Myself to do More

   I’m going to cook a sirloin tip roast today, all by myself! That’s right, you heard me, by myself. I edged the sidewalks yesterday, almost killed me, but I did it. The boy did the hard pard, he got the edger, the blower, and the extension cord. Ok, that’s not by myself, but I did the edging. The roast is going to be all me. Going to force myself to do some things, if not I’m going to lose the battle. The hope is the more I do, the more I will be able to do. The eyes are a little fuzzy today, combination of the heat and the exertion. Hopefully the roast will look something like this?

County Thinking For Me

     I got turned down by the county again for a curb cut at the rear of Perry Hall middle school, they said it was in my best interest. Honest, they really said that. If I was able to walk, I would be able to walk in the street. I could jog, bike, trike, pogo, do cartwheels. Kids can ride their bikes in the street, skateboard, roller skate. I guess the county has decided that when I became a full time wheelchair rider I must have become feeble minded also? They also said there wasn’t money in the budget, but I’m stuck on the fact the county thinks I am unable to make safe decisions.

     In an email from the school board, “Without a safe pathway through our property and in the interest of the safety of the community member, we are unable to support this request.“ Safe pathway? From the rear of the school to the front? How can that be? I think I need to go into full beast mode with the school and my county council person? Show them how much cheaper a curb cut would be as compared with a lawsuit to make a safe pathway from the rear of the school. 

No Steak For Me

     We were all set to go out tomorrow for a monster steak dinner at Michaels steak and lobster house, then the wife went on a recon mission. They aren’t wheelchair accessible, but they do have ramps that they use to overcome the couple of steps. The real problem is the bathroom, not only are the doors too narrow to enter the bathroom, the stalls are way too small also. Oh well, I will survive, I don’t expect the world to change for me, plenty of other places to eat. But a 40 ounce steak for $25.95, come on!

Crab Picking Woes

        Life is full of cruel irony at times. I love steamed crabs, we recently got a crab guy, great crabs, great price, steamed to perfection. The mustard is good, leg meat pulls out every time. The irony comes in the fact I have a dead right hand and a left hand with increasingly less dexterity. I have these beautiful crustaceans in front of me and lack the ability to pick them. My family picks them for me, but where is the fun in that? I start out trying, but it’s like watching a squirrel trying to drive a car. I’ve given up a lot of things, I will not give up crabs!

Heat Takes It’s Toll

     Heat is not my friend! If I was married to heat we would have divorced years ago, it’s just not a healthy relationship. My issue isn’t that I don’t personally like heat, it’s that it has a horrible impact on me. The first to happen is my vision gets cloudy, like I’m looking through cheese cloth. Next it is a total drain on my energy system, I become listless. Muscle control is next, I’m no longer in control of how my body acts, things like sitting up are affected. I had a confrontation with heat on Friday. I had a doctors appointment on Friday, had to go regardless of the heat. The van isn’t air conditioned, it was a hot one on Friday!  I had all of the aforementioned symptoms, it was a struggle to get my big ass in the house. The switch that heat flips isn’t so easy to turn off, the effects don’t simply revert when I get cool, they last for days. Vision is better, muscle control is returning, energy will be the last thing to return, hopefully. The problem with secondary progressive ms is that things don’t always return to where they were, it’s like my body is constantly playing a game of shoots and ladders, and I’m losing.

Wheelchair Woes

     This was the first tilting wheelchair I had, a quantum hd. It was awesome, except the motors kept burning up. I threw a royal hissy fit and they took it back.

Next I got my Permobil, was great for the first 2 years, then the tilt motor went up. Looking at maybe Monday to get it back? No big deal, it’s not like I need it!

Spasticity and Sleep

     I’m having an issue with sleep. Since I started with the catheter I have been enjoying 5-6 hours of sleep a night, straight through. Before I was getting up 3-4 times a night to go to the bathroom, I was only able to empty my bladder 1/4 of the way. The issue is that getting up 3-4 times a night makes it easier to go back to sleep, it all has to do with spasticity. An hour or 2 at a time still causes the spastic tremors when I move, but they would subside. Moving after 5-6 hours being in the same position is another story. These tremors are borderline seizures, my whole body goes stiff and shakes violently. It continues for a good long while. Understandably I can’t get back to sleep. I guess I should be happy I am getting any sleep at all

Arms Almost as Dead as My Legs

     I think back to when all of this started , I began to prepare myself for the day that I could no longer walk. I thought I had done a good job mentally preparing myself for what sounded like an inevitable future. I’ll tell you something that never crossed my mind, my arms and hands. I honestly never even considered it. Imagine my surprise one day when I was putting on my deodorant and had a hard time holding my arm up. I have prided myself in how I have been able to adjust to the little things, I now put my right arm on the windowsill to apply my deodorant, problem solved. The problem is, like my legs, things started on my right side, then gradually migrated to the left. The right arm on the windowsill was possible because I lifted it there with my right arm, that is getting harder to do. I have begun to drop things with my left hand, not aware they are no longer there. This realization is not a new one, 25 years ago I switched carrying my service weapon from the right side to the left, it got me 3 extra years at work. The problem is I am fresh out of arms. I am trying to prepare myself for what happens when the left side is as dead as the right, it’s somewhat of a hard thing to do. I will do my best, just not sure how much more I have in me?

No Abscess, No Bed Rest

     Had my wound care appointment yesterday, to say I was stressed would be an understatement! Got there, assumed my favorite position, rear end exposed and up in the air. The nurse started to probe, is it here? Here? Here? I had to explain that as she moved laterally on my body the less feeling I had, so as she moved out towards my hip I wasn’t aware she was touching me. It’s strange, to be at a doctor because you are having pain in an area you can’t feel. Most of my body is that way, dead feeling except along the midline. Because of this the search became a visual one. They rubbed, the pulled, they probed, nothing except for the one spot I was complaining about. Turns out it was all coming from a tiny irritated tag mole! No abscess, no sore, no long term bed rest. I am going to enjoy the victory while I can.

Permobil Wheelchair Repair Scheduled, Getting Closer

     They are picking the wheelchair up on Monday, dropping off a loaner, taking it in for an overhaul. I’m getting 6 new tires, a new armrest, a new seat cushion, and a new motor to control the incline function. I’ve got 817 miles on the chair so it’s to be expected to need a tuneup, I just wish it wasn’t like pulling teeth to get it done! With a retail price of $32,000 I guess they are busy selling more than they are fixing the ones they already sold?

Compression Wound May Have Opened Up Again

     Well, I think it happened? Taking a shower last night I forgot to get the seat wet, when I went to slide forward my rear stuck to the seat, I think I opened my spot? I’m waiting for the wife to get home for her to take a look. I am dreading this, last time it meant weeks in bed. I’m not buying trouble until I know it’s for sale, but I can feel something isn’t right. Keep your fingers crossed, I can use all of the help I can get!