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 17, 2019
Wednesday, July 10, 2019
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
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
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 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
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
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
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?
Sunday, June 23, 2019
Had humans in for dinner last night, they joined us, we didn’t eat them, just wanted to be clear. We’ve been friends a long time, it was great to see them. We got all caught up on each other’s lives, sat outside most of the time, a beautiful evening with beautiful people. We even had an uninvited visitor, if you knew what a densely populated hub of humanity we live in you would know how exciting it is to see 200 pound wild animals in your yard!
Friday, June 21, 2019
Me and the wife went out amongst the humans this morning, ran some errands. We went to Rousedale farm, Huber’s, and grabbed some lunch. Do you remember the movie “Cool Hans Luke”? I have become the character of Luke’s mother. Do you remember her? She goes to visit Luke in prison, she is laying in the bed of the truck, visits with him without ever getting out. That’s what I have become. At Rousedale the wife went in and got what we went for, mostly fresh, organic blueberries, I stayed in the van. Steve and Vicky came out and visited with me there. Same thing at Huber’s, Mrs Huber came over to the van. We even ate in the van. It’s so hard to transfer that we choose not to. We have to keep an eye peeled for a van that I can stay in the wheelchair, that or come to grips with being Luke’s mother. Worst case scenario I won’t even have that, I’ll just stay home.
Thursday, June 20, 2019
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.
Wednesday, June 19, 2019
A quick update, the parts ARE in, they just don’t know how to put them in! We are waiting for the representative directly from Permobil to come fix it, though a tiny problem exists, they haven’t been able to get in touch with him. So, I’m in an indefinite holding pattern. The wife and I are moving the controls from the right side to the left, I have to go to the wound care center.