Author: Jen Rios

I Hate Waking Up Like This!

This morning, when I originally opened my eyes, I could feel that my hips kind of were hurting a little bit. Both of them.

That is definitely not a good sign to wake up to! I put some prayers on my phone, and then I laid there for a moment. But then I had to sit up! I had to grit my teeth a little bit and I moaned but I was able to get into a sitting position.

But then my Mom came in to help me out of bed. Nowadays, every single day is difficult getting out of bed. And I have to be gotten out of bed now!

As my Mom was getting me out of bed, tears started pouring out of my eyes. It was sloppy all over my cheeks and I hate waking up like this! I have no control over this!

Once I got into my chair and reclined all the way back to slide into place so that I could buckle my pelvis stabilizer. Tears were all over my face but then I put my chair all the way down to put my sweatshirt on. And my Mom pulls my arms to pull my sweatshirt down in the back. Once I was sitting again, I could use both of my hands to wipe my face. I had to wipe my face twice!

Ttoday, my Mom told Sean how I used to move years ago. I really can’t remember that anymore! I’m just in my chair now…

Not Since I was 40?!

I got this email on March 1 and I didn’t write about it until right now I was thinking about it, and:

Screenshot

I have been nanking with dfcu you since I was 18 and I worked there when I was pregnant. I have never received a ‘birthday month’ email from them before!

‘Birthday month’ is not a thing anymore! At least not since I was 40! That was a milestone year, but then three months before I turned 41, I felt like an adult!

Sean told me that I was always an adult, but I told him that I was playing pretend until three months before I turned 41! I talked to him today and it is T -7 days until I am 43 and it does matter to me at all! I told Sean that I was a little bit surprised by it myself. It’s like I’m entering a new level. I don’t know what this one is going to be like and I’ll just have to wait and see! I always have tell my Mom that I’m 95 years old because that’s how I feel!!!

I think it’s strange that dfcu is a little late to the party, but all that email was an invitation to sign up for financial planning classes. I have been banking there since I was 18 so they know that I have no money! I have been ‘robbing Peter to pay Paul’ my entire adult life when I became in charge of the bills. I was a teacher and a single mom. But now that I am on disability, not much has changed!

At least I got some recognition even though it doesn’t matter to me anymore. I thought I would always love birthdays, but I just can’t now.

50° of “Miserable!”

so, my Mom has been messing with the thermostat as of late because she tells me that it is 50°. I let her know that 50° is NOT warm! I looked at the forecast for today and into the evening, and it was rain all night! I looked at that and told my Mom, “Yeah, it’s 50° of miserable!

The weather can always be a horrible thing for me, but now that it is the ‘change of season,’ that is also horrible for me as well!!! Not to mention that I am still recovering! I am thinking that I am just this sick now. Today wasn’t much different waking up this morning. I hope tomorrow is better but today wasn’t.

I was reminded of me living in our first apartment with my Mom messing with the thermostat. Once I moved into our apartment and turned the heat on when it got cold, our apartment was a balmy 72°! I lived in an apartment building that had four units so the heat was divided between our four units.

My Mom laughed when my heat was set at 72° and once I got billed for it, I changed it to 70°. And then the second bill came and I said out loud to really myself, “69° and wear a sweater!!!”

Now, I am 24 years in of having MS and staring at a quarter of a century in 10 months; I have to have my heat set at 72° because I can’t keep my body temperature at a good place anymore.

It’s not springtime yet for me and I’m not leaving the house until March 19. That day, I will decide if I will change my chapstick because I’m still cold and I have two new Vanilla Bean chapstick tubes because 50° is really miserable for me!!!

Beyond Startling

I originally posted, in jest, that it would take me a whole week to recover from the fiasco of the fire department helping me in the parking lot.

Well, turns out that is true! I had no idea that would happen! The fact that it is, is beyond startling! This morning, well, this afternoon, when I got up; I looked at my Mom coming out of my room after putting laundry on just after I had a awakened and my eyes were wide and then they started to sting. I didn’t trust that sting but I started saying, “This MS – I could really feel the sting, so I just mouthed the words, “Is kicking my butt!”

Because it really is now! I can’t get over the fact that it really IS kicking my butt! That fact makes me a little bit afraid because I saw myself still working and driving and throwing my manual chair in the trunk of my car when I was 65. All of that was not a thing when I was 35.

I never imagined this in 1 million years!!! #MSsucks!!! 😒😒😒…

NOT Recovered

Today is Sunday and I am NOT recovered! I am a bit startled by this fact, and maybe it’s just because I’ve had MS for so long…

This happened Friday:

I was able to fill my winter chapstick container so once this bag-o-chapstick is gone, I have two other tubes of Vanilla Bean and I will just wait for the weather to change. It’s starting to feel weird now!

Befuddled

I am so grateful that I did NOT hear that Alanis Morissette song when the Westland fire department came to my aid:

My Mom said that sirens were not necessary and they listened. I was surprised when I looked to my left and they were getting out of the truck.

My Mom and I talked today and we said that we should always park where the firetruck parked because the lot is big enough. Regardless, if there’s snow, we need to make our own parking spot.

I’m really not ready for this disease progression but it seems to be here now, and I’m quite befuddled by the whole thing!!!

March 2025 Faves

For my birthday, it’s Sara’s turn:

I clearly remember singing along to all of these songs, mostly in our second department! I think I miss my ability to sing MORE than I miss my ability to walk, but slightly less than my ability to see… #MSsucks!!! 😒😒😒…

SH*T!: an Explanation.

So let me ‘Splain ya a little bit:

My Mom showed these pictures to me yesterday and I couldn’t understand what they were at first… But then it dawned on me!!!:

That is how my wheelchair got stuck! There is snow on the right of me and I could not make sense of what I needed to do. So that happened! My Mom explained it to Sean today and the fact that we were both silent. We didn’t yell or get upset with each other, but just try to figure it out in silence and we waited for the firetruck.

And she showed me this picture, and I looked at it and raised both my fists up on the sides of my head and I yelled, “Sh*t!”:

I could feel myself sinking into the grass all over again! I guess that’s a thing around Easter. Tire tracks on my lawn!

Right after I backed up and saw the new indentation from my wheel I glanced over to my left and could see the tire tracks from the last year. I think I’m going to look for that post now to share!