Category: Tunes

So I am listening to my Sara Bareilles playlist, because I am not feeling well at all and I just kind of sit here reclined with my eyes sort of closed. That’s how I recover! But I just listened to this recording of “Let the rain come down” and it reminded me why I love, love, love love music so much!!!:

I saw Dr. Clark yesterday and he said that my body is tolerating everything well and I can go to an eight week check up this month. I don’t need to go back there until August 16!

My Mom asked if there was anything more I needed and he said kind of nonchalantly, “If it ain’t broke…” that statement made me smile because I heard that same thing two weeks before from Diane regarding my power chair.

I am exhausted today and I did not even put my contacts in today but I got good news yesterday so I’m going to let that carry me through the weekend I think. June was a success. I ordered my new power chair, and I got a great report at Dr. Clark’s!

In my exhaustion today, I am thinking about the fact that I have a pretty good handle on my MS, NOT that it easy at all!!! Far from it!!! But I know what to expect. I just have to deal with it. And that is a tall order! I actually have been thinking about this Sara Bareilles song and this specific lyric:

I just heard this song because she is getting me through my exhaustion. I know what to expect and I can do this. I can make the schedules and rent the vans. But I want everyone to be clear that this was NOT my first choice at all!!!:

I appreciate random videos in my YouTube feed because the writer’s strike continues. I am in a very strange place of exhaustion but I was able to watch this video. Oh, Joni?! I thought to watch You’ve Got Mail because it’s too early for Love Axtually! But you know I was thinking about Emma Thompson, the whole time:

My Mom told me last night as we were getting ready for bed that I looked like I was feeling better. And today I actually feel better myself, but better is the suggestive term! I have been feeling bad since last Thursday when I had to go and get fitted for a new wheelchair.

The appointment was so early that that’s difficult to come back from and this crazy weather is not making me feel well at all, and I am just a mess!

But I am feeling better today and I actually wore my contacts. Putting my contacts in my eyes has gone through a lot of changes since I was 12. That’s when I started wearing them. But for the last 22 years, I have been dealing with disease progression and loss of control of my hands.

Sean remembers me popping my contacts out of my eyes with my long nails when he was young, but now my nails are cut down to the nubs so I don’t scratch my eyeball! Now, my Mom has to watch me put my contacts into my eye, and because I can’t control my hands that much.

It’s very deliberate where just hold the top of my eyelid open with my right hand use my left hand to pull my lower lid down, and I use my index finger to just move the contact close my eyeball and then it suctions onto it!

I would say in the past few months, I have figured it out. My contacts just pop into my eyes the first try! And when that happens, I just smile and close my eyes while my Mom gets my glasses for me to put on, and I tell her 29 years like I am singing a Kanye West song!:

I have been flossing my teeth to this song for about a week. The rhythm is a nice speed for me to floss between each tooth. Last night, I think I was paying too much attention to the lyrics and I broke the floss pick:

I have been thinking about this lyric entire time I’ve been hearing it recently, “There’s something less about her.” That line really resonates with me because after 22+ years, there is something less about me. A LOT less about me…

Today is “Recovery Day” for me. I did not even put my contacts in today. Just as we were about to start our morning routine, my Mom looked at me and said in disbelief, “You look tired!”

I could feel my eyes widen! I just reminded her that I had two really stressful days and I am recovering! We watched A Man Called Otto again today. That’s what we do. Because I did not have my contacts and I finally decided that I really like this song so I should post it to here for your listening enjoyment:

May, “Go Time” was hard on me!!! It was hard on my Mom too! She is laying down right now and it took me a long time to wake up today! It was successful though!

I love that I’m going back to see Dr. Clark and he gave me a different supplement to add on Wednesday. I got my hair cut and then I had a doctor appointment on Thursday where I was able to get my weight and my blood work done as well as a new prescription for a new power chair. I asked her about my blood because it’s pretty low and I seem to get faint and lose my breath when I set up and I am transferred out of bed.

I asked Dr. Clark about it and he said for me to ask Dr. Chamas about it. He will deal with it after she makes her recommendation. Dr. Chamus was not too concerned because I have had low blood pressure probably for the past 10 years.

My blood pressure is on my mind now, so you know what song is in my head, don’t you?!: