Saw this on FB and it is how I feel most days. In my dreams I am able bodied and walking friendly. Then, I wake up. This past Friday showed me how crippled I am really am. I HATE my wheelchair but realized it is my life now. On Friday I was getting the laundry ready, turned on my WC, and nothing but blinking lights. I kept turning it off and on like a mad woman, and the same thing happened over and over again. I was completely screwed! Stuck in my room with no way to move. As the tears slowly slid down my face I looked up at whatever higher power is up there and quietly asked, WHY!? At that moment I realized how dependent I am on my WC and it is my only independence, if you can call it that. Then the anger hit and the quiet why turned to an angry why. I had no way to move myself and get from where I was. My son was in his room with his ear buds in and could not hear me cry for help. My girls were not home from school registration yet and I had no phone to call anyone. After 10 minutes or so the girls got home and unlocked my wheels so they could roll me out of where I had been trapped. This is my life, my nightmare!
So I ask… If I squeeze my eyes shut and open them again, will I finally wake up from this nightmare?
Will start with the Ampyra saga. I’ve been on it now for 3 months. Do I notice any improvement? I want to say, “YES YES I do”, but it’s not that simple. I do feel that transferring and rising up and down has seemed easier, sometimes. But, then I wonder, was it the same before the Ampyra? I’m sorry but most [99%] of the MS medications are for RRMS and not the progressive forms. They say this is for all types, but I do not buy it. You would think they would WANT to find something for the more serious forms as then the less serious form might be ‘cured’.
Well, it’s kind of a mute point now anyways as a clusterfuck occurred between the insurance and the neuro’s nurse and the neuro. Due to the type of drug this is they [ins] wanted to know the progress after 3 months before refilling my scrip. You would think that would be easy peasy… ummmm nope!! My neuro’s nurse [new] is one not the brightest stars in the sky when it comes to dealing with this. I think she mis-informed my doctor and he canceled the scrip.
She told me to call back Friday night after she spoke with my doctor. Fuck that… she can wait until Monday and this time she better have the right answers. I’m still waiting for a referral from 2 weeks ago she has not done. I’m a pretty patient person [hence my bathroom] but DO NOT push me too far. You will not like it. So we shall see what happens tomorrow.
I am finally back to doing my jewelry, MzTracyr Designs . I hope the good feelings last as they can go away as quickly as they come. It was really cool being at my design table creating again. It’s been like 3 or 4 months [maybe longer] since I have made anything. Drop on in and take a look if you can.
Now on to a funny/not funny situation. My wheel-chariot does not seem to want to hold a charge. So, Roger took it apart and tested the batteries the cables and all are fine. I’m wondering if the controller’s wire is messed up since I do run into walls from time to time. lol I’ll be calling them tomorrow. Oh JOY! Now the funny, omg, duh moment… I’m 6′ tall and wheel-chariots are not made for tall people. This one seemed the best so we got it. Well, when Roger took it apart we found that we can raise the seat almost 6 inches! We were busting up laughing and how stoopid we are. I have had the chair since February 2009 and we had no clue. We are not big ‘manual’ readers. lol It is so cool to be higher. I was in heaven today. He raised it so the back is a tad lower than the front and it is amazing. So, now I got the best chair, and it may be having issues. This is so my life!!
Due to my Hellish Hospital stay, I think this dream says it all. I have been having it more than I would like to.
She slowly wheels her chair down the corridor, doors pass, she can hear the laughter, she follows the sound. It is getting louder, the laughter, the muffled voices, she is getting closer, she is at the door. People in scrubs all around, faces lost, standing around the bed, someone is in the bed. She is crying through the sounds of laughter. Her face is cloudy, her face is coming clear.She is no longer in the wheelchair, she is in the bed, crying. Please someone help me…