Category: Tunes

My Mom told me that we would watch Chicago today but today she decided to change her mind so it is a change of plan.

We watched Last Christmas. I know that it is NOT Christmas time but the whole ‘Christmas in July’ thing and I watched the tail end of Nine Lives of Christmas on the Hallmark channel the other day. Everything’s crazy now, so it doesn’t matter!

I really dug hearing this song:

I did not sleep well last night to say the least! Abut waking this morning was not much better either. This weather ain’t no joke! Having MS for 22 years ain’t no joke either!!! Sitting an air conditioner doesn’t matter when it is so hot outside and I am in need of new windows.

I have never felt like this before!!! I am quite scared!!! I heard this song last night as I was playing Triple Tile 3-D and I heard this song and I have decided that in desperation, I have sent for a warrior. I really don’t feel like a Hercules and these tears just keep coming…:

My sleep schedule is completely wonky in this heat, and after having MS for 22+ years so, with the writers strike continuing, this is the video I was forced to watch at 3:51 a.m. this morning:

I thought that Seth Meyers singing Since U Been Gone was hilarious, but I have never seen this video before, so I watched it today:

Yesterday, I graduated from Speech Pathology. But, like all of my graduations, there was no fanfare for me. When Sean graduated how he did in 2020, I did not even get to go to that, I told him that he came from my body, so my curse as part of him.

So now, I am just in existence mode until July 19. I can catch my breath now. I have been listening to Sara Bareilles a lot lately. I have this song in my head because I really like it:

I just started thinking last night that I do not have to leave my house until July 19th. But then I remembered that my appointments are semi-virtual. I have an appointment with my Speech Pathologist next Wednesday.

Meira was the one who suggested that I go virtual for all of my appointments. She knows that transportation is an issue for me now. I see my Speech Pathologist virtually, I saw my nutritionist virtually, but then I have other things that I have to go into the clinic for.

I have to go into the clinic to see my optometrist and my neural ophthalmologist. They need to actually see my eyeballs! I did, however, decide to go virtual with my neurologist, because I completely understand that she is NOT going to give me a magic pill to cure me. I have also opted to stop MRIs. I stopped that last year; I didn’t have one.

I also need to see my primary care doctor every six months to get weighed and to get blood drawn. I really can’t believe how small my life is now… that, and I’m getting old! Because I titled this post, semi virtual, you know that I thought of semi charmed, kind of life by Third Eye Blind! That was my jam in high school, but I watched the video today and the lyrics are kind of dirty and I can’t believe 15 year old Jenny was singing this?!!!!:

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!: