Radio Chaos vs Radio Silence

Part of the allure of driving is the control you have over something that is so big, and powerful. Part of the fear of flying is that you are not driving.

My OT visited again last week, and she is still wonderful. She wrote out for me at no charge the request for the Ministry of Transport Canada my disabled parking pass. In other words, my crip tags are ready to go. 


I saw the new GP the next day, and more of my medical mystery indeed.
My mom took me to this appointment, and was her first time taking me anywhere by herself with me in the wheelchair. 


I had no choice but to walk, out of my apartment, into the elevators, down the ramp to her car, as she pushed the empty chair. 


Brave girl I am, I didn't shed a tear, but I wanted to. The power went out in the building due to a storm, and by law, I am still a certified first responder. It was very hard to suppress my instincts and my adrenaline, I was for the first time a bystander, even though in a power outage everything regarding the paramedics went as protocol.


What did we find out at this appointment? My levels are so wacked, they might be almost good. Except for the ANA, which is always the bugger. Once diagnosed, it remains as a little shit, playing tricks and again with the medical mystery. 


My GP gave me 8 samples of Naprelan. I don't like it. It's an anti-inflam, which I said I would (despite my hesitations) take the full 8 pills for a week.


I've been waking up confused, and angry and in more intense pain, no rhyme nor predictablility to it. 


The other morning, I woke up already in hysterics. This is not me. I am stronger than this shit. I was crying, and screaming, throwing whatever I could with whatever strength I physically had. It wasn't much, and I got even more hysterical. I wanted it to end.


I needed it to stop.


I was out of control. 

I lined up some pill containers, and logically and slowly added up the total mgs.  It was for no other reason but I had to stop this pain, this shit that is making me so very sick.  I had to make some goodbyes first. I was far too logical amidst the hell and chaos I am in. 

I fell asleep. I didn't touch one of the pills until my normal doses.
In my wanting to sleep forever, I slept for a few hours instead.

Not one used to not being in control, I suppose it was one thing I could control just then. 

I pulled back, because I didn't know what or how to do anything else. I couldn't be the Rhi that I am usually - the one that loves everyone. Am I losing that quality also on top of everything else?


I had nothing to give.

There, I Said it. Fuck Pride.

In the Face. Jealous much? Yeah I thought so. I've taken the loss of Independence very hard. I have had trouble walking since December of 2006, then got worse and worse. I am now in a wheelchair almost fulltime, from the pain that hinders me for walking.

I started to notice the losses almost right away, but god damn I fought it. I would get to know that emergency brake very well. If I didn't have the strength to push the brake all the way at stoplights, I put the car in park on the reds. One day in winter I was driving up a hill and my right leg had a life of it's own, scared the living hell out of me, luckily I still was able to think fast and not panic.

The biggest loss of simple things came all at once, no driving, (partly afraid of the blackouts but it hurts far too much), taking a step or 4, getting any food and drink is impossible for myself, often I need help in the bathroom too. I can't shower on my own. I can't shower period, but still need to be held and helped.

I was well taken care of in San Diego all winter by my dearest friends, and am back home now, being taken care of by the man when he is in town.

Last weekend I took the redeye from San Diego to Newark. That was the easy part. I had a jackass of a Personal Assistant. This is where I was hit over the head with my lack of Independence.

The PA was very rough with me on the airplane chair, to get to the wheelchair. He was harsh and fast and I in teary eyes asked him many times to please
be gentle, I am in alot of pain. He tried to get me to take the shuttle. He wasn't getting me so I started to talk like him.

PA: "Shuttle YES"

Me. "Shuttle No!. Shuttle stairs"

"Yes Shuttle Stairs. "Look at me, I can't walk".

Due to not taking the shuttle I had to change terminals, which entailed going outside, a skytrain and going through security, for the second time. Continuing through the terminal, he leaves me at the gate. However, he didn't lock the chair, nor help me get in the normal people seats. We argued because he was taking the wheelchair, (I had the chair every other time for all layovers), he tried to convince me one stranger would help me, again I had to say look at me, I can't walk.

PA: "You okay you okay." as he's leaving me.

"Not really".

Thank you very much Newark Continental. Your letter is forthcoming.

Upon my return, I really can't do anything for myself. I can dress myself, but only in soft things. I really miss cooking.

I can't go out to get anything for anyone. I am still self conscious in the chair, for the staring.

I don't Look Sick, but I look as though there sure as hell is something wrong.

My muscles have atrophied, I'm still about 90 pounds. I fall.

I was never one to take things for granted, and I am grieving the losses daily.

This disease is evil. I should be at the top of my profession, I am only young still. I suppose I just hit the top early?

Fuck Pride, let it go.