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!

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!

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.

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?

Deer Friends For Dinner

     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!

Van Transfer an Issue

     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.

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.

Disgusted With Home Mediservice , or Roberts, or Whatever They Are Called Now

     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.

Permobil Dealer Lied

     The wheelchair dude came Monday, picked up my chair, dropped off a loaner. He told me I would have my chair back later that day. He called later that day and told me they ran out of time, they would finish it up Tuesday morning and I would have it back after lunch. As 4 pm came, I called, spoke with Maggie, the woman that told me on Friday that we were a go, all the parts were in. First thing she told me after I gave her my name was that they were waiting on parts, someone should have called me. So no chair, at least not mine, the one that was made to fit my measurements. Instead what I have is a chair that is way too small for me, controls on the right armrest, and no charger. They came out the first time May 8th, I am beyond pissed, but what can I do?

Doctor Week, My Permobil is in the Shop

     Busy week on tap for me, starts off with the wheelchair dude coming today. He won’t be fixing here, he’s picking it up and dropping off a loaner. Good news is I will be able to incline, taking some of the pressure off of my butt. Wednesday I go to the wound care center about said butt, hoping for the best with that, don’t want to go through another debridement. For those of you that don’t know what that is, they open the wound, use a surgical rasp to clean out the bad tissue. It only hurts for a few minutes, it’s the packing it with medicated strips and the bed rest I dread. Friday takes me to the neurourogist, see if I need to increase the number of times I use the catheter. Right now it’s 3-4, but I don’t think it will stay there, I’m guessing it will go up to 5-6? I feel at times like a leper, waiting for the next body part to fall off, we should start a pool!

Sidewalks Aren’t For Wheelchairs

     I’m trying to get a curb cut at the back of Perry Hall middle school so I don’t have to travel on the broken sidewalks. It’s hard to get up on the sidewalks anyway, no access, not enough of those curb cuts. I spoke with the county, they will put in 9 of those cuts, but can’t fix the sidewalks, different department or some other nonsense. The truth of the matter is that the sidewalks aren’t for people in wheelchairs. They are narrow, have expansion joints, grass encroachment from homeowners that don’t edge, bushes that block the path, toys, low hanging trees, tree roots that push up sections, not a cake walk. Those 9 cuts the county will put in are all at intersections, they won’t do one in the middle of the block, which of course is where I want one. No biggie, I will use the street, use 1 of the 9 cuts the county has offered, then a short trip to the middle school on the sidewalk. Brings me back to the cut at the middle school. That cut isn’t in the purview of the county, it belongs to the school board, different bureaucracy. I’m looking for just one! They don’t see the need. I know who to talk to, Mohammad Musti, no luck convincing him, yet. 

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?