Month: March 2023

I have been thinking about this and I think I need to ‘splain ya a little bit about my Mom…

I am my Mom’s only biological daughter! I am the youngest of five and the only girl. I think that makes me the ‘favorite child’ but my brothers and I will discuss that at a later date.

I was thinking about this today because I shared my new ID picture and that was a little contradictory post I had written on St. Patrick’s Day. Let me ‘splain ya:

I had written on the day before Saint Patrick’s day about my difficult time going to get my state ID.

On the way there, my Mom commented on my face. She asked me about it because she had never seen my expression before and I told her that I had never felt how I felt before! I snapped a picture just before we left for Secretary of State thinking that I could use it but then I saw it and opted NOT to!!!:

That was the day that I realized that I can no longer do what I used to do! And I was just talking about paying all of my bills the Wednesday I get paid before getting a haircut and then the next day, I would get my state ID.

Based on how I was feeling on the day that I was going to get my ID renewed didn’t make me feel good at all!!! But then when my new ID arrived at my house, I posted the new picture and the evidence was clear. I looked pained.

And the only reason that I can tell you that with confidence it’s because I was feeling it so badly and I think I have gotten to a point where I can no longer hide my pain:

My Mom commented on how wide my smile was and I told her it was because I was in pain. I also commented on the fact that I was not wearing my glasses because the glasses made a glare in the picture.

I had to take my glasses off and smile where she was pointing and if you study the picture, you can see that my right eye is not focused because I couldn’t see!

But I am smiling in that picture but I have to ‘splain ya a little bit about my Mom. I think she started doing this my second year teaching. My first year teaching, I realized that I could NOT put up the posters that I always dreamed about putting on the walls in my own classroom. I remember crying the day I first walked into the room before the school was even finished being built. It was a little bit overwhelming!

I have written about this memory before but it was at a staff meeting in my classroom, back when staff meetings used to be held in my classroom, we were all called to my room and my room was completely put together because my Mom had done that roughly a week before hand.

I will never forget when my friend and former colleague, Lauren, walked into my classroom and saw it completely finished. She looked at me and asked, “Who did you get to put the posters up so straight?! That question was asked after my first year teaching when I would waste 10 to 15 pieces of paper to make the copy straight because I couldn’t have a crooked document?!

I responded nonchalantly, I said, “My Mom. Where do you think I get it from?!” I remember that we both laughed but my Mom is THE REASON that I am the way I am!

Keep that in mind when I explain what happened when I went to get my ID renewed. It was cold! I had to wear a winter hat. Just after I awakened, I combed my hair.

I have been using my Dad‘s combs that he would get from the hospital since he died. I have shorter hair now and it is thinning after having MS for 22 years. I combed my hair and I thought for a moment because I knew I would have to put a hat on because it was cold. After I was finished combing my hair, I put the comb in the front pocket of my sweatshirt because I knew that my Mom would ask for one!

I was as stressed driving to the Secretary of State and it was seamless once we got there. Sean made the online appointment for me and we walked right in and up to a window because I am in a wheelchair. A woman came to help us right away and she started typing on her computer and then she directed us down to take a picture.

I have known my Mom for 41 years and I know how she operates. Once we went down to get the picture taken, she started fixing my hair. She knows that I don’t really care about that kind of stuff and she was just trying to fluff it up and she said, “I wish I had a comb!”

And that was my time to shine! I pulled the comb out of the front pocket of my sweatshirt and we both started laughing!!! I told her that I knew that she would ask for a comb!

My new ID came on Monday or Tuesday and I just now was thinking about it. I think that if you look at my ID picture, you will see the progression. I think it’s a progression of the pain I am feeling. Let’s compare:

I think that I was about 28 in this picture and I remember taking the picture and being irritated because it was raining outside and therefore my hair was poofy and I was still driving:

I was able to renew my license online so I don’t think that I changed my picture until I got my first staknee injury and subsequent surgery and I think I was about 35 years old:

And then there’s this picture, this was taken just a couple weeks ago when I was already 41 years old and after my state ID was expired for a year because I didn’t leave the house. Looking at this picture, it pains me! My jaw is set and my eyes are pained:

I am at a loss right now! My pain is becoming more evident and I’m not sure what to do about that! #MSsucks!!!

I had a virtual appointment today with my speech pathologist. She told me that I am doing so well! Ben, she dropped the bomb on me!!!

Toward the end of our appointment, she told me that she can no longer justify seeing me on a monthly basis because I am speaking so wonderfully!

I asked her in exasperation, jokingly, “So, you’re breaking up with me?!” She laughed and told me that it’s like with Sarah. I don’t need her right now but because MS is progressive that I can call her whenever I am having a problem with my speech.

Then, she told me that I was the one breaking up with her! She told me that only about 75% of people with my problem do the homework and actually work on it. She said that I have done so well that I can see her every three months. I will call the office tomorrow to set up a June appointment.

Then, she suggested home health care. That is something that I thought I was already doing but I will need to think about this one. And she says that I will not have a problem getting coverage for home health care because basically, I am a homebound power chair user.

That statement was SO hard to hear! I think because it’s true… I have been circling the drain with that for a long time but I will have to go to my optometrist and to see my Neuro ophthalmologist. I am going to seriously think about Neurology.

I am STILL rocking my vanilla bean chapstick because this was the temperature today right now as I am writing this:

Sring-Schming!?!!! My Mom will say things like 47° isn’t cold and I respond with, it’s NOT warm either! It definitely is WAY TOO cold to be AFTER my birthday but it is. I will not leave my house until April 19 when I get my next haircut so I will think about changing chapsticks that day.

I was reminded today that the first food that I introduced Sean to was peas. He stopped over for a bit and he asked if he liked them. I shook my head and made the face that he made 20 years ago.

I was reminded of that today because I had peas for lunch with my crackers and gruel. I normally have spinach with the gruel and crackers. What I discovered about halfway through our routine is that peas do NOT cut it for me!!!

I was completely exhausted. I told my Mom not to buy any more peas because even before I was faint, the skin of the peas made me choke. It’s so startling how restricted my eating is now… 😒😒😒…

I have just come to this realization. It is an inflection point for me and my disease. I am currently navigating the transition from DISability to INability.

This change in ability feels like a punch in the face! I say that all of the time but I have never been punched in the face but I’m sure it is not enjoyable at least that is what I mean when I say that I am being punched in the face.

The horn on my wheelchair just has died! That is such a detrimental thing! The only saving grace is that I will be getting a new wheelchair hopefully in July. I need to have my PCP send the prescription for my wheelchair to my wheelchair tech. I have been in the email conversations with her and I will get the prescription from my PCP mid April so I can schedule my fitting for the chair in May so then Dave will deliver it to me in July when it is built.

My Mom is laying down and I am still reeling from my disease progression and I am at a loss. I know that I just need to pause for a moment to figure out what I am going to do. As I am doing this, when all else fails, I know I can listen to this album and be taken back to driving to the credit union just after Sean was born:

I know all of the words to this entire album and Bono’s voice calms me..