Month: June 2023

July 2023 Faves

I’m still on my Sara Bareilles kick, and here is what I am listening to right now:


And then there’s my WALKING song, which I will ALWAYS LOVE 🧑🧑🧑;


And then there’s this one which I think is my new fave after my life and my abilities have changed so much!!! 😒😒😒:

Existence Mode.

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:

Gold Star, A+ Graduate

I had my virtual Speech Pathology appointment today. And at this point, my Speech Pathology appointments are basically just talking to each other. I remember that Meira said that that’s what she would do and she is assessing me as I talk. Today, she let me know that she can no longer justify having me on her schedule.

I asked her if she was breaking up with me, and this is a real break up now, and she said that she is choosing to think of it as a graduation. Then she let me know that I am a gold star, A+ graduate!

I really liked hearing that, but I am so tired now! I took my contacts out right after my appointment to let my eyes rest because with my air conditioners on, it’s a fight to reach homeostasis now.

It is so tiring! I will not need to leave my house again until July 19 for my haircut and then again on July 24 for my eye appointment with my optometrist. I don’t see my neural ophthalmologist until next year.

Semi-Virtual

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?!!!!:

“If it Ain’t Broke…” OR “Let the Rain Come Down”

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!!!:

Oh, Joni?!

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:

“Punch it, Margaret!”

Today was June’s ‘go-time’ and it was just one day. I do not have to leave my house again until July 19 for my next haircut. I have a little bit reluctantly, accepted my life as a homebound person but I’m not sure that my Mom has really accepted it and that kind of stinks. Today, as we were leaving the salon from getting our haircuts and my wax.

I was just about ready to ride up the ramp when my Mom said, “Punch it, Margaret!” I immediately started to laugh, got into the car out of the wind and then I had to tell her the significance of that commercial!!!

I have not seen this commercial in more than 30 years! This commercial is me and my aunt Rita! When we would get out of her driveway, she would put the car in to drive and let me hold the gearshift and she would place her hand over mine, and then that was my cue to say,”Punch, it, Margaret!”

I remember at my young age, I thought I was actually doing the driving, and I thought we were driving at the fastest speed in the world! I was in high school and I told someone that I know all of the gears for driving a shift, and I demonstrated them with my left hand. (Remember that I was NOT the one driving! I was just sitting in the passenger seat while my aunt drove). I’m left-handed anyway! I just remember that that guy asked me, kind of incredulously, “You know how to drive a stick?!”

Then I had to tell him ‘no’ ashamedly. But telling him my memory with my aunt Rita made me smile just to like it made me smile today when I told my Mom about it: