Author: Jen Rios

I watched Holy Thursday mass with Fr. Mike Schmitz because I am part of the virtual front pew. My 41st Lent has been a good one. There is a completed puzzle with this picture on it on top of my refrigerator probably full of dust. I don’t know that I will ever do anything with it:

I am having an extremely difficult time dealing with all of my disease progression and I am completely at a loss!!! I was just explaining to my Mom today that everything that is happening to me is completely new and frankly, it’s a little scary!!!

i’ve told my Mom that I am completely startled that my internal clock has shifted. Sometimes I fall asleep five minutes after I would have been waking up if I was STILL working. That means I don’t fall asleep until 4:35.

That’s sad and completely freaks me out! I cannot believe that I actually used to do that! And I did that for the entire time I was living at our current house. Thanking about it now, I can no longer force myself to do anything! I have been operating for the past 41 years that if I just ‘grab my guts ‘and ‘suck it up,’ I’ll get it done. And it’s so shocking to me that I can’t.

There have been too many ‘can’ts’ for me to count in the past 22 years but one ‘can’t’ that was hard for me and my cousinT called me to ask about it was my lack of ability to sing. Yep, that ability he has been gone for a number of years and that hurts my soul!!!

My Mom is laying down so I started watching YouTube videos and I joyfully fell down this rabbit hole of videos and I know that my cousin reads my blog sometimes so I am going to tag her in this post for whenever she reads this!:

My cousinT, Shannon, has introduced me to the musicals RENT, and Wicked by just listening to the soundtrack in her car! We would sing all of the time when I was in high school! I really miss that but it was so much fun!!!

In terms of my new disease progression reality, I am accepting it but definitely NOT embracing it… but, alas, I have no choice but to deal with it…

It has been cold so I had no qualms starting a new vanilla bean Chapstick. But I discovered this yesterday:

I am still rocking my winter hats but I made another executive decision to start my pomegranate one once this one is done because at least the weather is in the 50s now?!

It looks like the worlds barometer is broken just like mine! But, the pomegranate chapstick was my introduction two Burt’s Bees flavors. I think when I start using it, it will remind me of Barwis.

An MS friend of mine posted this and the sixth trigger as what I am experiencing right now!:

I am quite to startled by all of this and I’m i’m not sure what to do at all!!!

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!