Month: May 2024

So, I have been thinking about this since last Thursday at my endocrinology appointment. I think I need to start off this blog post by explaining the type of person I am.

I think Sean was very young and we had gone to a doctor appointment. And getting into the office, (which we were going to often) was NOT handicapped accessible. There was a probably an inch gap between the sidewalk and the actual floor to the office. It was difficult for me to get in! Not TOO difficult but annoying.

I don’t know what it was, but I was given a survey to complete after Sean’s appointment. I do not know why I took the time to explain how difficult it is for me to get into the doorway the building. I just remember that I did that and I think that I was irritated that it was so difficult so I wrote it on the survey.

I think it was like a month later when we went back to that office for another doctor appointment and to my surprise, the sidewalk square right where you open the door was redone. It was on a slight incline so I could get into the office easily! I was completely aghast! I looked at Sean with disbelief, and with my voice shaking, I said, “This is because of me?!”

That building is no longer a Henry Ford building and Sean and I don’t even go there anymore but I was completely floored that I said something about it and it changed. I guess the “Squeaky Wheel…” is correct! I was thinking about this experience when we went to my endocrinology appointment.

My endocrinologist is in the same building that my dermatologist is just on a different floor. It is downtown at New Center One. It is a building that is newer to Henry Ford I think. But, let me tell you that anything downtown is definitely NOT handicap accessible!!!

I am just going to put some pictures that show the lack of accessibility. This was my face as I try to navigate through it:

let me first start up by saying that 23 years into this MS diagnosis, I constantly hear that d*mn doctor who told me that I was going to go blind and then die at the outset. I am not blind… yet and I’m not dying. I just have to live with this! It is getting difficult! Let me ‘splain ya:

I want you to take note of a couple things in this picture. My Mom took it when we were leaving. Notice the cobblestones?! Oh, I sure did!!! That is so NOT cool and it’s a pretty large area that has cobblestones.

Notice the entrance. Normally, and doctor appointment I go to has the automatic double doors clearly marked! I could not see this little button and my mom told me it was there. Unfortunately, there were nothing but standard doors in this building and as a power chair user, that really doesn’t work!:

But then you have to:

My Mom took this picture because I was inching down the hallway because this was what I turned in to:

It was such a tight squeeze! And remember, my vision isn’t as good as it used to be!!! And then we left:

This entire appointment, I just kept thinking, “Disabled people matter too!”

A majority of my appointments are in Dearborn which is completely accessible. Otherwise, I usually go downtown to Henry Ford. And I’m just used to it there, so that’s not a problem either.

I was thinking that I cannot be a squeaky wheel here as I was in the elevator that was way too shallow for a power chair. And I know because my feet were right up against the glass as we rode up and down:

I only need to come here for my dermatologist, and my endocrinologist and I think that seeing my endocrinologist is a little bit premature. Next month, I’m going to see my internist in Dearborn completely a completely accessible place!!! It’s like this now… 😒😒😒…

I realized this today. I am not sure why but I am unsettled. The only reason I know this is because there is only one other time in my life where I changed my gum out three times in pretty much an hour. I was chewing my gum so fast that the flavor was taken out pretty quickly!

I have yet to bounce back from Thursday. Now, my recovery time is a FULL WEEKEND each time I leave the house! But I’m going to see my naturopath on Tuesday. after that, I can crash until June 19.

I saw a little over 3/4 of the movie Burnt. I will finish it tomorrow. I love that movie!!!

I met my endocrinologist today. I did this because I am a ‘rule follower.’ What I learned from her superior is that my bloodwork said that I am a -2.8 and you have osteoporosis when you are -2.5.

I see my naturopath on Tuesday. Actually, it’s a substitute for my naturopath in the same office, because my naturopath is injured. I told My. Mom today as I was thinking about my chosen MS plan I think I am Eastern medicine but I still check in with Western Medicine.. That’s why I saw her today. I think that I will write more about this tomorrow because I am exhausted!

She wanted me to give me blood sample but my appointment was so late in the day that the lab was closed. Or at least it was closing in 15 minutes and it was too far away for us to get there. She told us to give the blood sample and my next appointment, which is next month with my internist.

So, in summary, I now will see my endocrinologist once a year in May just like I am seeing my neurologist once a year in August. I started that when I was teaching because it was the summer when I would see her. So much has changed with this disease progression, it’s kind of making my head spin a little bit…

Sean sent me this picture a couple days after Mother’s Day and he asked me where he got this from:

He asked me, “Is this red?! And when I said yes, he asked me how he got it!

I told Sean that he didn’t get it from my side of the family! And then I broke down his dad’s side of the family. Sean’s grandma is Polish and I think the red beard might come from somewhere in Sean‘s grandpa‘s line.

But, then I just told Sean, I have always wanted to be Irish with red hair, so I guess it’s OK if something that I made, that came out of my body, has red hair in his beard! And then we both laughed

Oh yeah, when we got to the salon, Both my hairdresser and her sister, (who is my Mom‘s hairdresser) noticed and commented that my hair is curly. Wait. What?!!!!

Well, it is! Fat a lotta of good, that has done me! I have always, ALWAYS wanted curly hair! My Dad had curly hair, and two of my brothers had curly hair! Even my nephews have curly hair! What about me?! I really wanted it! But to get it now is kind of like a slap in the face!

My hair is short now. Even shorter than my reverse bob that I got when I was 26. It would have been nice to have long flowing curls! There’s no point to me having it now! As we were driving home, my Mom just said, “Skinny legs and curly hair.” and just said, “Fat lotta good!”

I made Sean come with me to see this movie at the theaters when he was like nine because I wanted to see it and he just went along to get snacks and popcorn. This is who I wanted to be for my whole life growing up:

My Mom found this picture in my basement. It was attached to one of Sean‘s projects when he was young:

This picture commemorates the very first time I met Sean. He was eight hours old and I was so surprised at how small he was! He did not have a name for three days. I did not know that I would leave the hospital without him and that it would be 31 days before he would come home with me!

That was such a hard time! But this picture is 22 1/2 years old. The first thing I said to him was, “ Hi. I’m ya mom.”

So, I saw half of a Hallmark movie maybe a week and a half ago and I liked it. I knew that the movie would be on again sometime soon so I would catch the beginning half this time. This was the movie:

I liked that. I was surprised that this movie came on and I was able to see it from the very beginning! So these kids, are doing a family tree for a class project. The little girl is the product of IVF. They find her biological father in true hallmark movie fashion! I will say this movie is NO A Country Wedding or Harvest Moon. But I really liked it!

I have been a diehard Hallmark channel movie fan since 2009 when we moved into this house! I really liked the cheesy dad jokes! I heard the first one the second half of the movie that I saw first when this kid says that his dad calls them, “Ice Cubes” because they are from Iceland and Cuba.

But I must say that the thing I liked the best was when the girl’s mom has a best friend named Maura and she was talking with the woman about meeting the dad. And the woman does not want to meet him because he is a professional musician. The best friend says, “So, you don’t want to meet your long lost bad boy baby daddy?” that statement made me laugh audibly!!!