Category: Tunes

Every single day, with MS at this point is a completely different experience!

Case in point:

I tried to hold onto the good feeling from yesterday, but today, it’s raining, ALL. DAY. LONG, and my body sure feels it! It’s one of those days where too many tears are leaking out of my eyes as I am silently pillaging. But I know that it is story time, regardless of how I feel so here goes:

I will begin this story with a 23 year old memory of me being admitted to the hospital because I was having neurological problems. The details are hazy, but I remember my Mom coming into my room after the doctors had left from doing the rounds. She walked into my room, and kind of was aghast, “The doctors came, and I wasn’t even here?! Did you ask this, this, and this?”

I just looked back at her calmly, and said, “Yes, and I asked this, this, and that!” When I told my Mom that, she just kind of nodded and said, “Well, okay then.”

That was in December 2000. I have been in the SAME neurology clinic since then! I have stayed with the same neurology clinic the entire 22 years! I have done all of the tests! All of my hospital records are at the same hospital, the one I was born into, and the one I was diagnosed with MS in.

My original neurologist, and his nurse have both retired. Dr. Elias handed me over to Dr. Cerghet which is my current neurologist. I emailed with Suzanne, Dr. Elias’s nurse often! She really had a handle on my case!

Let’s fast forward to today where I have had MS for 22+ years. I have a handle on what I am doing!
it is, by far, not easy at all, but I’m hanging in!

I was still teaching when I was fitted for a custom manual wheelchair and the same occupational therapist fit me for my first power chair.

Christie has left so Dave is my new wheelchair tech and he was with Diane to fit me for my new powerChair. I got fitted at RIM (Rehabilitation Institute of Michigan) in Detroit they are affiliated with the DMC.

My sleep schedule is completely messed up now, so I changed over my contact phone number to my MIchart to my Mom’s phone number because I sleep most of the morning!

So, yesterday, my Mom came into my room just when I awakened to tell me about Dr. Cerghet’s nurse called her to tell her that I need to reschedule my Neurology appointment because I need to get fitted for a new wheelchair.

But here’s the thing, I got my powerChair through the DMC because I had my second knee surgery at the DMC because I was working out at Barwis at the time, and Mike Barwis hooked me up! My second surgeon was the Pistons doctor at the time, Dr. Frush.

When I was injured, I called Henry Ford but they were making me wait weeks or something to talk to orthopedics, whereas Mike Barwis had me an appointment within two days. I could have gotten it the next day, but that was at the clinic he worked at far away, but then he was in West Bloomfield the following day.

So, my Mom received a phone call yesterday about me getting fitted for a wheelchair, but I have already done that, I did that back in June. I just need her to sign the prescription!

My August 4 virtual appointment that Dr. Cerghet wants to change is just my annual appointment. I’ve already done everything for my wheelchair! I told my mom to let her know that it took them 2 1/2 hours to fit me for my new chair!

My Mom tried to call Neurology back on Friday, but she was not able to get through so she will call on Monday to set the record straight! I am confident that my Mom will straighten it all out!

The woman said that we were confused, and my Mom responded, “We are NOT confused! She told the woman that I made the appointment back in April and I have already taken care of my wheelchair.

I’m kind of startled that in the past 22+ years, I have not experienced any red tape like I am now!!!

So yesterday when my Mom told me about that phone call, I thought of Beyoncé because this woman doesn’t know about me, but she also doesn’t know about my Mom either and my Mom will handle it!!!

Wow! Recounting all of that stressed me out and with the rain it makes it even worse so I guess I have to be reminded of Beyoncé again right now!!!!:

My Mom had a story for me this morning when I awoke! As she started telling it to me, I instantly thought of this song:

I have never seen this video before and I cannot believe how young Beyoncé is, but all I saw in my head was Mr. Latour coming into my classroom singing it. I can’t remember the funny circumstances or the joke around it but I know that I laughed!

Rather than re-counting the story, my Mom told me this morning, I am just going to live in my memory of Mr., LeTour, singing Beyoncé even though I don’t really remember the exact circumstances, but I know at that time I was teaching English, still walking, and still on crutches? Or I hadn’t been wheelchair-bound that long yet.

I will write the story about what happened today, tomorrow. For today, I am just going to live in my more able-bodied time and make it a good day!

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!!!: