Author: Jen Rios

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..

Last night, I was home alone and I was processing my mail. I realized that my hand strength has left me so much that I can’t even drag my finger along the sealed part to get it open. I was tearing envelopes open left and right. But it was all junk mail! It didn’t really matter.

I took a breath and it started looking at the mail that I had received. I did NOT open the letters I received from AAA (that’s my car insurance), medicaid, and a card from my best friend.

I didn’t even tell my mom about it until today. I told her that I was punched in the face again and I told her about my lack of hand strength. We are going to work together to figure that out. I am reeling right now! I am dealing with so much and it keeps coming!!!

My Mom recognized how upset I was about this newest development. I told her that I think a tooth is loose from this last face punch! And I think to keep me from crying, she just said, “You have a good dentist!”