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Friday, August 30, 2019

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.

Wednesday, August 7, 2019

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!

Saturday, August 3, 2019

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?



Wednesday, July 31, 2019

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. 

Wednesday, July 17, 2019

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!


Wednesday, July 10, 2019

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!

Friday, July 5, 2019

Lack of Feeling In My Rear

     I was really concerned the other day, out of nowhere a spot on my rear end suddenly hurt. When I say hurt I mean agony! No warning signs, just progressively worse as the day went on. The wife wasn’t home so I tried to reposition, laid down, got out of the chair, no luck. How could this be, nothing when I got up that morning, now agony? It didn’t make sense and I was not happy. When the wife got home I told her what was going on, asked her to take a look. I steeled myself for what she would find when I heard her laughing. At some point during the day I had a bottle cap find its way into my underwear! Yes, I had a bottle cap stuck to my ass all day and didn’t know it was there, or how it got in my underwear! Son of a... are you serious? I know I don’t feel much, but a bottle cap? Stuck to my ass? You can’t make this stuff up!

Tuesday, July 2, 2019

Wheelchair Finally Fixed

        I got my wheelchair back! You are probably wondering what all of the fuss is about, a wheelchair is a wheelchair. I used to think that way too, used to. Imagine your favorite chair, then imagine one you hate, it’s uncomfortable and too small. Now imagine sitting in the latter every waking hour of your day. My chair was literally made for me. They took measurements and made it custom, just for me. I hate having to have it, but I’m so happy to have it back.

Sunday, June 30, 2019

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.

Thursday, June 27, 2019

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!


Tuesday, June 25, 2019

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

Monday, June 24, 2019

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?