Getting enough oxygen has been my constant struggle for years. Geeze! The veins in my neck are popped out and my clavicles hurt. My chest hurts and my rib area is sore. Now I have the headache that goes with that. I have never liked the medical word for all that…dyspnea. I see it in my medical records a lot. I suppose the biggest reason I have it is myasthenia gravis. My diaphragm gets too tired to breathe. Add to that asthma, anemia, allergies, COPD, my hernia taking up too much space and low blood oxygen. I hate it when I go on these yawning jags. I yawn and yawn and yawn and cannot seem to stop.
My whole head is stuffed up from the darn mold and other allergens in the air. I keep waking up despite CPAP and supplemental oxygen. My ears are stuck and there’s gunk in my throat. I don’t want to sit up! I want to sleep. Sooooooo tired!
Somebody posted this on my MG group. We all agreed we looked and felt the same on steroids. Look! There’s even a crop of skin tags on the neck
Thanks to Medrol, I am getting the obligatory fat pads around my neck/chest/back. When I lie down, flat, I feel like I am being strangled. The fat pads help cut off air. Not liking this 😦
I think I wrote the above in the middle of the night. When I read yesterday’s blog post and what’s above here, I hardly remember any of it. That scares the beejeepers out of me!
Olive watches and waits
So this morning I wasn’t so sure I would make it out of the shower. I kept dropping things and my knees were continually buckling. I did not have enough strength to use my arms to shampoo. My eye was drooped closed, my neck would not hold up my head and my vision was the pits. And breathing! I feel like I am sucking air through a straw.
Unpacking and assembling the chair
The problem wasn’t my blood sugar. After waking up and taking a shower, my morning test showed 98. That’s good 🙂 I needed to get dressed and move around my old wheelchair and some furniture. Time to make room for the new, pink chair. The guy spent about an hour and a half adjusting the chair to me. I am glad to have a working chair. The gadgets will be a huge learning curve. The legs raise and lower, the back tilts, the seat comes up a bit and OMG…the controls are complicated. I can even program the joystick to control anything that’s bluetooth enabled…like a TV or computer. Sooooooooooo much to learn!
The Roho seat cushion is fantastic
Very comfy cushions. But I am sorely disappointed in the arm rests and leg rests. NOT comfortable at all. I tried to sit in my power chair to use my laptop and gaze at the TV. No way in heck! It hurts 😦 The armrests are way too short for my arms. That means the sharp, unyielding edges dig into my arm. Also, it made my left arm dangle and felt like my arm was coming out of the shoulder socket. That’s the part I hate the most.
Leg rest with hydraulic lift leg and shin holder
What I love is that the ride is way less jarring. Bumps don’t hurt so much. I also love the color 🙂 I HATE, HATE, HATE going through regular sized doors. There’s maybe a half inch clearance on each side…in other words, it’s almost impossible to not hit something. I especially hate the pegs that hang down at an angle out front. I have done some damage to property today. I took off paint and metal from my apartment door, I nicked the cement walls at the doc’s office and I hit something at the library. Hopefully I will be better at driving as I practice with this chair.
Another huge annoyance is this thing that’s midpoint in the arm rest. It connects to the chair rail so I can put weight on the arm rest. I’m not sure if the guy forgot to tighten the Allen wrench spots or if it’s designed stupid. The connection keeps coming undone and it’s a total PITA to be sitting in the chair and trying to get the parts to fit back together and stay that way. When that connection comes undone, the armrests point to the floor.
Something I love are the padded restraints that keep my legs together. When I am toodling down the sidewalk and am MG weak, my legs fall apart…not very attractive! Now my legs are corralled. It also keeps my skirts away from the wheels. Fewer holes in my new skirts! 🙂 I’m going to find a bunch more love/hate issues. I already miss the seat belt on my old chair. Maybe I can switch them? And even though there’s a Trader Joe’s insulated bag hanging from my headrest, this chair had no place for a bag to hold on to and the headrest is much flimsier. I have no clue how I am going to go grocery shopping 😮 It really sucks that the wheelchair guy showed me where the 8 reflectors go instead of putting them on. Would have taken him 2 minutes. I cannot bend to stick the reflectors to the caster wheels. Sigh……
After the delivery guy was done fiddling with the chair, and giving me basic instructions, I was on my way to the doc’s office pharmacy to pick up meds. But, I met Gordon who was on his way to the senior center. He said they were giving away free food at 1 PM. We bopped over there in our chairs. Turns out it was a sheriff or two and some inmates. They grew the food at jail. Aha! I found a news story about it and I recognize the shirts they were wearing.
I love looking over at my old power chair as furniture and the pretty flowers 🙂
Bonanza!!! I got fresh Swiss chard, basil, oregano, sage, carrots, radishes, Egyptian walking onions, blackberries and fresh-cut flowers. I beamed the whole time and thanked the prisoners profusely 🙂
I brought my goodies home and put them in the fridge. The flowers went in the mug I got as a Christmas present. Then I really did go to the pharmacy and to the library to take back a book. By then I was barely moving. The heat and sun are wicked intense today. I have been chilling out in freezing A/C for the last 4 hours and am just beginning to feel human again. But, ohhhhh, my head is about to explode 😦
Geezum crow! The Jordan River has been “closed”. That’s where I went down the Jordan River Trail. Just now it was announced that the pond at Liberty Park is “closed”. Not sure how bodies of water can be closed. No one would swim there…ever…at least on purpose or if sane. The water in those places always looks gross. What’s going to happen to all those cute duck babies I took pics of? They’re too little to fly. How are they going to escape the toxic effects? 😦
While I was at the library, my phone rang, it was the endocrinologist. She read off my blood test results. She didn’t do more than a regular old CBC. That’s not what she told me in the office. Huh??? She promised to prescribe more Humalog and test strips. I feel confused about the endo. Heck, I feel confused about everything all the time.
My belly is still swollen tight. Who knows what’s happening there? It hurts and I’m queasy. The new, flimsy seat belt slips down and off my hernia and makes it feel worse. Bummer. I will study up on ways to tweak my new power chair. I have 3 thick manuals and a bunch of paperwork to read.
Now to think up ways to cook my yummy vegetables 🙂