When my IVIg trial was over, I told the lawyers I was done telling and retelling that story. I want a new story to tell. Hoping for change here is like banging my head against the wall…..useless, pointless and it only hurts me.
I have had enough of this craziness. There has to be something better than this. Every time I try to talk myself into sticking it out here, more bad stuff happens. And the bad stuff is a moving target. Health care, dwelling place, creepy neighbors, crime, poisoned air, lack of services, cost of living, stingy benefits, etc, etc…..
Each night, I check my door multiple times. I make sure the latch is pointing the right way and I lean against it to make sure it’s tight. I am a bit obsessive about that. Imagine my surprise when I woke up around 2:30 AM and smelled strong cigarette smoke. And it wasn’t coming from the bathroom exhaust fan like it usually does. I happened to need to take a toilet paper roll to the recycling bucket in the kitchen, and that’s when I realized smoke was coming from around the door. It wasn’t even close to being closed 😮
I shut the door tight and went back to bed. I went over and over in my mind about how many times I had tested the door last night. And I had sat in my comfy chair until around 11 PM. No light or smoke was coming in then. I was so creeped out that I quit trying to sleep and sat up for a couple of hours.
Got up at 10 AM, took my meds and rested, took a shower and rested. I have been wanting to get a haircut for a long time. I had a coupon for a $7.99 cut, so signed in online and took off. It was pleasant on the way there. But dang it! It was hot and sunny on the way home. Since I had wheeled it there, I did not know what was waiting for me when I got off TRAX, on the way home. Yet another blankety blanking special event blocking off my street…..both sidewalks 😦 It was a beer festival. As I went the long way around it, I tried to read the names on various tents. Lots of vans parked on my street with different brewery names and logos.
As I wheeled it home, I was thinking about the event. Why would anyone want to go to this thing set up on pavement, in the hot sun. Are they crazy? If I drank beer, I would go to a local store, buy a bottle of each and go home to drink it in peace, quiet and comfort…..and it would be cheaper! At 1 PM, there was a long line at the gate. The event didn’t start until 3 PM, but all the tickets were sold out online and there were only a few available at 2 PM. $25 per person.
I am part of a couple of support groups that are for disabilities in general, not specific diseases or conditions. Somebody posts a lot of Asperger’s links. I read a few articles yesterday. I sure identify more with those folks than anybody. It always makes me feel better to think of the similarities from childhood, on. I like being different….but with a little bit of company 🙂 Most regular old people are very confusing! I usually prefer being a loner rather than a joiner.
There are often gatherings in the community room. Pot lucks, bingo, movies, etc. I almost never go. With a bunch of people in that room, it gets too hot and there’s not enough oxygen to breathe. The lights make me turn red. Today, I was dressed from getting my hair cut, so I figured what the heck. I got the closest spot to the door and sat at a table that soon filled with people I like. My voice worked 🙂 We had sloppy joes, bbq beans, potato salad, coleslaw and cold drinks. Afterwards there was ice cream with toppings. The meal was at 1:30 and I hadn’t eaten anything yet for the day, so I fell for it.
Nobody paid much attention to my stupid myoclonic jerks…..so that was a plus 🙂 I got to know my new next door neighbor. She lived in Vermont for 2 years in the 80’s! And best of all….she doesn’t smoke. She said someone was smoking in the hallway last night…a lease violation. The other people at the table with me all have dead bolts. My door can be opened with a bread knife. I am going to have the manager look at the surveillance cameras on Monday. Maybe we can find out who is smoking and opening doors.
I have no clue how people feel about me. I am always doing experiments. I think I am pretty nice in person…..most of the time 🙂 But I am also rather oblivious to social stuff. I like parking my chair in some obscure part of the building and waiting. It’s always interesting to see who shows up and how many people gather around me. I tried hard to pay attention today. Lots of people stopped to talk to me and I also got lots of hugs and kisses. The people at my table just got a smile or a nod. The handsomest guy in the building jumped up and carried my plate to the table. Nobody else got that treatment. Either people like me, or they are buttering me up for something later :-p
For me to eat, it takes 2 or 3 times longer than anybody else. I have to be totally deliberate for every swallow of food and water, or I choke my brains and lungs out. The ice cream table was out on the patio. I was only partly droopy until I went outside. I came back in with one eye closed. I did not last much longer. Once my eyes droop, I get weak all over.
Usually the first thing I do when I come home is go to the bathroom and strip off my clothes. My undies were soaked in sweat, top and bottom. Yup….it was hot in the community room. I had the A/C going while I was gone. It took hours to cool me down again. That was an unusual window of time when I wasn’t queasy, I could talk and I was fully clothed. I guess I was meant to chow down on some free food 🙂 I haven’t sat in a room full of people for months. It wore me out!
Olive held down the fort today. It’s a lot of work to watch the cars and chatter at the birds!