Month: November 2021

#NeedSomeMusicInMyLife

I thought of this song as I was falling to sleep last night. I know that I’ve posted this song on my blog before because it’s one of my favorites. Here it is again because #NeedSomeMusicInMyLife. I drifted off to sleep singing this song in my head and thinking of simpler times when I was still driving and walking.

The, “MS Brain”

I got a text reminder this afternoon for a Speech physiology appointment for tomorrow at 3 o’clock. I had completely forgotten about it. I made the follow up appointment back in August when I had my swallow test. I I think it is crazy that I had completely forgotten about it!

I am extremely grateful for text reminders because whenever I go to a doctor’s appointment, a van needs to be rented for me to accommodate my wheelchair. So, tomorrow morning, my Mom is going to call there to see if there is a van available to rent for tomorrow.

I think it’s a little strange that 20 years in, I am seriously having the, “MS brain” that so many members of my MS support groups talk about. I don’t think I’d like this but let’s hope my Mom can get a van tomorrow!

MyGirlL: My, “Pink Ladies”

Yesterday was my Mom’s birthday and she was so thankful for all of the birthday wishes from the two posts that my brothers put on Facebook! I really liked that her birthday present from me arrived on her birthday! It’s only now that I really realize that I took over her birthday by having Sean on November 2nd. Her birthday is the 5th.

I was not able to get an actual birthdate for Leia, and her vet marked it as October 26th. So, it seems that ALL of the important birthdays in my occur at the end of October early November. I took some pictures of her yesterday showing off her new sweatshirt and Leia’s sweater too! My girls’ colors are, “Pink and pink!”:

Doctor #21: My Impressions

Okay, I’ve written before about how I am very familiar with the downtown campus of the Henry Ford Hospital. Both my Mom and I are. I think she’s a little more familiar though! Neither one of us had EVER been to this part of the hospital. It was a culture shock! It was on the 12th floor and the hallways were extremely skinny! That’s not difficult if you are one person walking through the clinic. But I am kind of a lot in my motorized chair with my legs extended.

I made it through all right though. They had me go directly to the x-ray room. I’ve never had x-rays on my feet like this before! Toni, was excellent though! She held my feet as the pictures were taken because it was obvious that I can no longer control my feet. All of this was immediately intimidating because the hallway was so skinny and I cannot control my feet at all! I was ashamed at how pronated they were and it made me sad!

Once I was taken back into a room, we talked with the in-take nurse and I noticed this poster on the wall which is an extremely sad commentary on our part!:

A female doctor came in and asked what was going on with me. She was pleasant with me and had me take my compression socks off (my Mom did that!). That was so strange! Although I was barefoot during my appointment, my feet did not turn purple but they did not feel comfortable either!

Dr. King was extremely young! So was his counterpart! She had her name tag on but I could not read it very well but I saw that her first name was Chrystina with a Y?! I have never seen that before but I liked her because she also graduated from Michigan!

Dr. King has known many people with MS and he said that it is strange how it varies so much! He stated a man that he knew was diagnosed when he (Dr.King) was four years old and the man stopped working when Dr. King was about 35. So, he looks a lot younger than he is! I told him that I thought it would be like that with me but it’s not!

Well, one thing that I really liked about him was that he explained to me what he normally does with Botox and Orthotics and stuff but I explained to him that I’ve only been down that path a while ago. He then, paused and looked at me. He recommended a therapy and rehab place in Grand Rapids:

Grand Rapids is more than just a hop, skip, and then jump from me and as we spoke, he kind of understood that this is where I am. I have explained how if certain therapies were available 15 years ago then I might try them out but I got the impression that he understood that I’ve had MS for a very long time! He didn’t say it to me but he kind of understood that this is how it’s going to be for the rest of my life without saying it to me. I think that I really appreciated that!

Because we were in downtown Detroit, my Mom stopped off at the Tamaleria and I had a fresh and warm tamale! Or, better yet 2 1/2 fresh and warm tamales! They were DELICIOUS!!!

#MyGirlL: She got me!!!

Sean came over last night to have dinner with my Mom and me. He told me that he did not want to cake because he is, “A man now” When he called me to tell me he was coming over, I started to sing, “Happy Birthday to him as soon as I answered the phone and my Mom joined in! After we’re finished singing “Happy Birthday , my Mm started, “ May the dear Lord bless you…” which I joined in, OF COURSE!!! I ran out of steam halfway through, “Sto Lat” and Sean started to laugh and told me that he didn’t like the second half of the song anyway! That made me laugh and I still continued the song! It took a while but I got it all out and Jennie would be proud!

We ate dinner and my Mom told Sean to sit by me for a picture. He was carrying Leia Like a baby and he sat next to me. My Mom started snapping the pictures and Leia was moving around.

She got me!!! RIGHT IN THE FACE!!! Now, I love her to pieces but, I KNOW where her mouth has been! And if I think about that too long, that’s disgusting!!! Sean and I had a really good laugh!!! Sean told me that Leia has been wondering how my face tasted for a long time! I was completely grossed out! I will have to get that picture from my Momz to show you all had a later date! In the meantime! It’s still gross when I think about it!

#MyGirlL: Here I Am!!!

So, Leia has gotten used to the sounds that my Mom and I make when transferring at night when we are in the hallway. She even has gotten used to when I transfer into my bed at night. It took a couple weeks before she stopped coming to Sean‘s bedroom door to see what was going on. Then she will occasionally saunter to the door when I am already safe in my wheelchair. Almost to say, “You guys okay?”

Well, last night, I made a new sound when I was in my bed and let me explain. I miss the days I worked out at Barwis Methods all the time! But, I have noticed that my hips were hurting. I had to think about it for a while and I remembered why they were hurting and how I was stretched each time to make them feel a little better. I need to be stretched out. My Mom will have to stretch me out. She is an excellent caregiver but I’m not sure that she has the skills that you a acquire by getting an exercise science degree.

She definitely was going to give it her best! What needs to happen is that I will lay on my stomach and she would need to bend my knee and pull my foot almost to my butt and hold that stretch for 60 seconds. I had her do that a few times for each leg.

There are technical terms for the stretch and, “Opening the joint” but those words escape my mind because it’s been so long since I have been to Barwis and medical terms aren’t really my thing anyway. I think I explained it correctly to my Mom but here’s the thing:

My Mom is used to looking at me knowing that my, “Bad leg” it’s on the right. But, when I am laying on my stomach on my bed, my “Bad leg” looks like it is on my left side because I am turned over. My Mom treated my legs as such and grabbed my, “Bad leg” to move it. That caused me to yelp unlike any yelp I have given out before. Tears accompanied that yelp as well. But wouldn’t you know, when Leia heard me, she came running! Right into my room, as if to say, “Here I am!!!” My Mom had to assure her that I was okay as I was trying to gather myself.

She is just too cute and I love her!:

November 2021 Faves

So, I heard this song and had to go down the rabbit hole of this album!!!:

The second I heard the opening bars of this song, I was taken back to our second apartment. I used to clean after Sean was bathed, read too, and asleep. I was still walking back then and as I cleaned, I would dream of what my life would be like in the future. I still know all of the words to the songs and I I am a little bit sad that life didn’t work out how I had planned and here I am staring at 40 in four months…

MY heart has proven NOT to be one of these hearts:

Sadly, I never found a “Blue horizon waiting for me…”

I always thought I would find my, “Somebody.”

I thought this would be my future…

I’m still waiting for my blessing…