Month: June 2023

I think that I wasn’t even out of bed until about 2 o’clock this afternoon. I did not put my contacts in today. My eyes need to rest! I am a little bit startled at how exhausted I was yesterday, but I think that is because my appointment time was for 1:00 in the afternoon!

I NEVER am awake that early and ready to be out in the world! But, I will not have to have another appointment with Dave and Diane at RIM for five years. So there’s always that. I really appreciated seeing that I am in the correct place and seeing how well Dave and Diane do their jobs!

Because they are really great! We were discussing my seat cushion. That is a big thing now! It’s perilous if it is not comfortable!!! I sit all day long! I think that it was about a year ago when I first started having problems with the seat cushion and I started talking with her about that then.

Dave stopped by with a new seat cushion for me to try out a couple months ago because that’s the new seat cushion I would have in my new chair. Diane watched my Mom transfer me to the table from my chair and she told us based on how my Mom moves me uses the ‘give’ in my current cushion to slide me off of the chair.

She told us, “If it ain’t broke, don’t fix it.” And we decided to stay with my current seat cushion. Things are really starting to get serious with this whole MS thing… I don’t think that I am fully prepared for it yet really…

I had an appointment downtown at RIM to get sized for a new power chair. My appointment time was for 1 o’clock in the afternoon. We were pulling out of the office at 2:35 today. I am exhausted because we had to get up so early this morning!

Diane is the head occupational therapist who gets everything together for my chair. Dave is my wheelchair tech who comes to my house. They have opposite facing desks on opposite walls. My Mom set on the exam table and I sat in my chair.

Christie even stopped by because she was in the building! She was the person to suggest getting a PowerChair and five years later, that was an excellent decision!

Diane knows that this is not our first rodeo in getting a chair from RIM. She refreshed our memories which I appreciated! It was really nice to be sitting in that room between both of them typing away on their computers. Diane would stop to periodically ask Dave some dimension of my chair and he get up and would check it out on my chair.

It was almost to the end of their typing when Diane walked over to me with a ring of swatches. She told me that it’s time for the important question and asked me which color I wanted. My Mom told her that I will pick black because I always pick black!

I went with the glossy black opposed to the matte black finish. Apparently, the sparkly black is only for manual chairs. We talked about the time schedule for me to receive my new chair and we discussed my co-pay. Disability is still for the rich but it’s not as bad as I thought it would be! I should have my new wheels in July or August and I am back in black.

Today, when my Mom walked into my room to get me out of my bed, the back of my right shoulder was itching. I put my left hand in my shirt to scratch it and then I smiled pretty broadly. My Mom asked about that.

I’m not very talkative in the morning, but I continued smiling, and just told her, “I scratch; you move.” I had that warm memory in my mind as my Mom was taking the covers off of me. I explained that Sean told me that I have the best nails to scratch backs, but I suck at scratching them!

I think that was the beginning of the loss of control of my hands. I just told him, “I scratch; you move.” I would then just raise my left hand and shake it, and he would take his shirt off and move himself to make it, so that I was scratching his back.

I was thinking of that memory with fondness because my Mom cut all of my nails to the nub yesterday because I need to not have them to put my contacts in and to take them out of my eyes. Yeah, I still wear my contacts, even though I wear glasses with a prism on them.

I will see my optometrist in July, but I won’t see my neural ophthalmologist until next year.

My YouTube feed has gotten pretty boring with the writer strike going on, but somehow I was able to see this clip and I watched the entire five minute video, and I cried! I cried, because I no longer can control my emotions at all, and I was reminded of driving to Barwis with 11-year-old Sean next to me.

The specific memory, I was thinking of was days after Robin Williams died, and we were listening to The Pulse on the way to Barwis for my training. Sean didn’t mind coming with me back then because professional athletes were training at the same time I was.

The DJ started speaking and mentioned Robin Williams death and challenged the listeners to call in and tell them then favorite low-key Robin Williams movie, and give a reason. Oh, that was easy for me! Duh! Good Will Hunting and my reason for this being my choice was the ease with which Robin Williams dropped an F-bomb!

I was still driving when Sean was 11 so I had him call the radio station and I told him what to say when they answered the phone! He was not connected and I was glad because retrospectively, I now realize that was NOT appropriate at all!!!

So, we think that Leia has stopped scratching but we think that’s because she restarted steroids now. She’s started her second dose of the therapy to help with her allergies. my Mom told me that Leia could be on those therapy shots for allergies for a year before it starts to work.

It was at Leia’s last appointment where the doctor said that we should start and to mitigate some of the scratching while we see if the therapy shots will work. When we finally got her tested for allergies, she is allergic to all kinds of weeds and grass from outside and dust from inside as well.

My Mom let her outside to do her business a few days ago and she called her in after a while and she could not see her in the yard so she started shaking the pill pockets bag so she would come running.

I could tell that she had gotten into some thing because my Mom exclaimed, “Oh! You bad girl!” I told my Mom not to show me pictures until we got what we needed to get done finished and then I forgot about it so she texted me these pictures a couple days ago:

When my Mom showed me these pictures, she told me that Leia has found a new lounge spot in the backyard. It’s underneath the bushes! I was thinking about all we have gone through with her and all the scratching, and how long she has been on steroids and the fact that she is on shots for her allergies, which are outside allergies and she comes in all full of stuff!

We love her so much, and i’d just shook my head! She had just gotten a bath a couple days before, so my Mom just wiped her off.