Category: Uncategorized

Well, I think I am recovered enough to recount my last out of the house event. I went to the neuro ophthalmologist. I had seen him three times before and Thursday was my fourth. She has lots of pictures of my eyes from different machines so he wants me to come in in the new year to get new scans done.

I have heard his name from the beginning days of my diagnosis. I have seen him downtown in the main hospital. He knows his stuff! On Thursday, he had a fellow working with him. I didn’t catch his name but I was comfortable with him because I am very familiar with Arabic accents having grown up and Dearborn my entire life.

He sat down in front of me to look at my eyes. With that machine that I am very familiar with using. As he told me to look over his left shoulder, I realized how good he smelled! I couldn’t name the scent but it was pleasing!

He left and as we waited for Dr. Skarf and him to come back into the room, I told my Mom that he smelled really good! Once Dr. skarf’s came in, he pulled up my chart and I was able to see over his shoulder my eyeball. I’m not sure if it was the right or the left but there was pea sized dot in the middle of my eye.

I am not looking forward to the new scans that he will order because I remember getting scans done before and my left eye had a gray shadow in terms of what I am able to see. I remember being alarmed at that but he told me then that there are some people who have complete parts of their eye black because they cannot see.

I wonder what my scans will look like 21 years into this disease. I already have a few doctors appointments scheduled for the new year. I think I will schedule him in February or March.

It seems to be taking at least the entire weekend to come back from leaving the house and that concerns me a little bit when I think about it…

I had a scheduled virtual appointment with my speech pathologist today. It was a great session! She said that I am doing a wonderful job with my speech!

Hearing that made me so happy because I am really working on it! I have another appointment scheduled next month with her. I am just a scheduler. I always have been but now, that’s pretty much what I do.

I have been thinking about getting my college transcripts because I do not remember what classes I took and when. When I think about my time in college, it makes me tired because I cannot believe that I did it how I did.

I told my Mom just today about the course schedule being released toward the end of the semester and I used to grab three copies of them! I would pour over the course offerings and it was like a Jenga puzzle. Everything had to fit in and I was on a time schedule! I did not graduate until Sean was three. My favorite picture:

He was eight when I got my masters degree.

I have been thinking about this because I have scheduled a doctor appointment each month since April and I have my ophthalmologist this month and then I have another appointment next month!

I have so many doctors and so much going on with me and my disease progression now having had MS for almost 22 years.. So, things have changed from scheduling college classes to scheduling doctors appointments because my health needs lots of doctors! It’s exhausting but it is good that I am a scheduler…

I talked with Sean on the phone yesterday and I explained to him what I was doing. I had just gotten out of bed and I was taking my morning vitamins and drinking my shake while I was praying. I told him that I was going to eat my lunch shortly which is overnight oats and he told me that my life is extremely, “Routine.” I agreed with him and said, “Absolutely! But I’m okay with that.”

I really appreciate that I am totally fine with how my life has been playing out in terms of my abilities. Of course, I would LOVE to NOT have MS but my Mom and I are working well together and I am just going with it!

I was thinking specifically about my life being routine because it has been for the last few years. I think it must have been three years ago where I started drinking a shake for breakfast because it was easier for me.

What I found is that drinking my nutrition in the morning was better for me instead of eating them because it takes too long to digest. It was probably about two years ago when I started drinking both my breakfast and lunch and would just have a limited list of food for dinner.

So, I place an order from Target when I get paid each month. Among a few medical supplies, I order three boxes of Atkins shakes. Well, last month, when my Mom opened up the box, they gave me the wrong kind! They gave me one box of milk chocolate and not dark chocolate which is what I have been drinking for a long while now. I remember posting this picture on Twitter back when I used to watch GMFB and when Nate Burleson was still on the show:

I searched through tons of pictures in my blog to find it. And this morning, I took a picture of the shake I drank today because I wanted to compare the two:

Now, I will be drinking these for the next eight days because you know that my Mama did not raise no fool! I emailed Target when I realized That part of my order was wrong and I got the immediate response of, “Throw it out, donate, recycle it“ and they let me keep it so you know I am drinking it because it is free!!!

I had a successful pillage today! My disease has progressed so much that I had to modify how I do this now. I had to add a table on my left to hold the pillbox as I am getting the pills out of a ramekin on my right. Today took longer but I didn’t drop any pills!:

I felt pretty accomplished, that is until Leia got out of bed and stood where I could see her from my chair. I started to laugh and I had to snap a picture!:

It looks like #MyGirlL had some skills to make sure that I saw the ‘poop face’ she was giving me!!! 😂😂😂

I read this article today and it has really affected me! I couldn’t figure out how to just place the article on here but I think you can get there if you touch the text below:

https://www.yahoo.com/entertainment/christina-applegate-ms-diagnosis-cant-walk-without-cane-gained-40-pounds-213801672.html

So I gasped when I read this part of the article:

In this part of the article is a good segue for what’s going on with me:

I am also well aware of the havoc that MS has reeked on my body for 21+ years! However, my body is reacting a little differently for right now. I’m really not comfortable talking about it but I think that it started in October 2021 or at least where I could notice it.

I think it was in October 2021 where I had my swallow test with my current Speech Pathologist. She asked me that day if I had lost weight without trying. I didn’t really think about what she said. I just said, “There’s always weight to lose but I think I have. I wear a size medium now when I used to be an extra large.”

But now, I no longer chew anything. My diet has become very restricted because the muscles in my jaw are not working. So, I am losing weight but it is NOT comfortable at all!!!

So, this happened last night:

That really stunk that this happened because I had a doctor appointment today with my new primary care doctor. I had dropped my glasses when I took my contacts out and I forgot about them so when I moved my chair, I ran my glasses over.

THANK GOD FOR AMAZON!!!:

I am extremely grateful that my glasses are coming tomorrow.

*** I just saw that I did not post this but my glasses arrived and my mom put the prism in and all is well regarding my glasses, not everything else in my life…

I saw this post on Facebook just before I went to sleep and I texted Sean the actual video and told him this video was made for us!:

https://www.facebook.com/reel/1511185859342017?fs=e&s=TIeQ9V

This is the song that goes along with the elephants walking across the street. I am not sure if that is going to be a live link from Facebook but I’ll put this song here. That is Sean’s ‘guilty-pleasure’ song!:

It’s for both of us! I love elephants! He used to love that song when he was a kid!

There is a moment each morning when my bed changes from zero gravity to completely flat. That moment is a very painful moment! I have written about it before when Sean noticed the moment my face changes when I am completely flat. That was the second or third day I had slept in the bed.

Now, since my disease has progressed, the face I make is accompanied with groans and sometimes body jerks.

So, when I awoke today, my Mom watches as my bed goes flat and my body jerks and I groan. I have told her that that is something I just have to endure before she gets me into my wheelchair. She does not enjoy watching that at all so today, just as I was almost flat she told me after I groaned that she could just smack my leg do you distract me and I’ll began to laugh!

I laughed because I remember that she told me that she would smack my face to wake it up when I was having numbness sensations on my face.

We laughed about it for a long time and I told her that her wit has perfect timing because that was really funny! I reminded her that Sean thinks that she is funny as well. It’s very understated and you don’t expect that but my Mom’s wit has absolute perfect timing because I needed to laugh today!!! Year 21 of a mess ain’t no joke!!!

This song has been randomly popping into my head each time I blow dry my hair. I have hair similar to the first singer but I remember talking about this specific song with Mr. Wright probably about 13 years ago: