Author: Jen Rios

“Stirring in the Cinnamon”

I woke up this morning and I was not even out of my bed yet and I heard in my head in Sara Bareilles’s voice, “stirring in the cinnamon.” Now that lyric is completely NOT true!!! She sings it like it’s something good in her coffee and I have a mouthful of cinnamon every morning and I must tell you that it’s terrible!!!

It’s like a mouthful of dirt. It used to be really hot but now that I’ve done it so much and for so long it’s just a month full of dirt, which is still disgusting.

So of course, I had to hear this song:

But searching for this song on YouTube give me a live version which I had to hear!

I don’t know the guy I went to this concert with anymore, but I remember her saying, “Hi, I’m Sarah. And this is my band.” She sang two songs and we could tell she was the real deal! About two weeks after the concert, I heard her on the radio.

That’s what I thought about this morning and cinnamon really is disgusting! When I was thinking about reading the post I thought about it and I listened to this song:

The song was big in my second apartment. I thought of this one too after I listened to Sara Bareilles and cinnamon so gross!!!

About that Time

Well, it’s about that time. It’s the time when I have air-conditioning in the afternoon and heat at night. This will continue until it gets too hot and I will just melt – even in the air conditioning.

I constantly check the weather to see how I will feel. It looks like next week will be a little cooler:

It’s like that with a chronic illness.

I am completely comfortable that I am using my pomegranate chapstick. I finished both Vanilla Bean chapsticks I bought last winter and when I left the house for April, it was a little chilly so I was okay finishing my Vanilla Bean chapstick Now I will just use pomegranate until May 20. That’s when I leave the house again. I will order my summer chopsticks then.

4:48.

My Mom’s appointment was at 1 o’clock and she arrived a little bit late. I got back into my power chair at 4:48. Slouching my manual chair helped so my knees didn’t burn, rather, it was a dull ache and I’m glad it has stopped.

My knees feel a lot better right now! It’s really hard for me to accept the fact that my manual here no longer works for me. In fact, it hurts but it is necessary.

I think it will take me a moment to unpack this feeling…

Pelvis Stabilizer

Oh, by the way, since being in my manual chair, I have lost a significant amount of weight. The pelvis stabilizer does not work for me because it is too big. However, because I am in a power chair now. Techswho come into my house are NOT allowed to work on my manual wheelchair. That stinks!

So, here I sit, with a belt that is too big! I’ll be happy when my power chair is fixed…

Insurance only pays for my current wheelchair. It’s not my manual chair anymore.

Disease Progression Stinks!!!

Well, my power chair is at National Seating and Mobility as I am writing this. I have opted to somewhat slouch in my manual wheelchair. The seat is comfortable and the back is comfortable, but my knees and feet, not so much!

I am hopeful because I can do anything for about six hours. That’s how long it will take. I am trying not to think about my knees burning…

I think that it’s absolutely crazy that a chair that was made for me in probably 2014. Does that work for me at all in 2026?! Disease progression stinks!!!

Broken

I dropped my pillbox the other day and the left side part that snaps broke off. That really stinks! I’m going to wait until the right side breaks off and then I’ll get a new one. I thought I took a picture of what it looks like, but I guess I did not:

That’s what it looks like when I pillage. This is my fourth pill box. I take 10 different supplements for a total of 45 pills. I will go in July to get dosed by Dr. Clark.

The latest supplement that I am on, I just called in and Erin gave me a supplement that I can take to help my my vision. The supplement that I stopped taking was not for my eyes, but my vision improved has an off-label benefit.

“My Smurf Baby”

AN EDITED RE-POST!!!:

So, my Mom really digs the show, The Pitt. I’ve started watching it with her, and I did it too I guess. But the season finale. That one, I have seen twice and I cried more the second time I saw it!!!

Let me ‘splain ya:

In this show, there was a woman who had preeclampsia and she was 37 weeks pregnant. She wanted a free birth, and she was having serious problems! I’m sorry to spoil this if you have not seen this and you want to, but she ends up having an emergency C-section.

That was when I started to cry. I’ve never seen a C-section. I had one 24 years ago at 32 weeks and I didn’t even know what it looked like. I gasped so much watching it. 

But when he get the baby out, I began to cry!!! The baby was blue. So was Sean and I always used to call him my Smurf baby for years! And it has only been in the past five or six when he will say, “Because I was dying!”

I didn’t really, truly understand that until seeing this birth! He really was! I was too young to really comprehend what was going on! I cried so much watching this! I’m so grateful that it all worked out!

The final scene helped me to calm down because Alanis is just the best! I was in seventh grade when this song came out and it’s still a banger:

I am beyond embarrassed that I posted the explicit version of this song. My apologies, I have since rectified it.

“It’s Time to Pay the Piper.”

Yesterday, before I got out of bed, my Mom looked at my toe. It’s slowly healing, and she told me that she guesses since I’ve had MS for 25 years… and I interrupted her and said, “The chickens are coming home to roost.”

She countered with telling me that my brother said that to her (about something else) and she didn’t know what it ment.

I just said quite flatly because I am realizing how true it is now, and I said “It’s time to pay the piper.” And I thought of this song…:

I pillaged today.

Get This?!

My Mom missed a phone call from Sarah today from NSM. She left a message and my Mom returned her call and left her a message and said that she hopes to hear from her before the close of business today. She then called Ray and left the same message.

Ray called back and my wheelchair will be fixed on Tuesday. My Mom called and reserved a van. She is taking the chair in at 1 o’clock to NSM in Troy.

I can’t believe how quickly this happened?! I really like that I know how to bypass the system to get the doctor to sign the orders quickly. I just have to have him email me and I will put it in MyChart.

I like that I know what to do the next time this happens with my chair. But get this, Medicaid keeps kicking me off?!!! It’s good that my insurance covers 80%. This repair should have been free, but I think this is the third time I’ve been kicked off.

I will have MS for the rest of my life and wheelchair repairs are quite costly. Luckily, we can cover this one so I can get my chair back quickly. I’m not looking forward to re-enrolling in Medicaid. That’s a hassle!

Done.

Well, my teeth are cleaned, and I have my August appointment set for the day after my endosyscopy with Dr. K. My legs are beginning to throb, but my toe is healing. I will keep my socks off until we figure out what we’re going to do next. I think disease progression has led me to open toed socks.

I’m so relieved that I’m done but it keeps getting harder and harder each month. I have three appointments in May. My haircut and wax, my lower limbs ultrasound with vascular surgery and I will see my neural ophthalmologist. After that appointment, I will get my Covid shot.

I’m super exhausted and my legs hurt. #ItSucksToSuck!!! #MSsucksWithDiseaseProgression!!! #AQuarterOfaCemturyWithThisAndCounting… 😒😒😒…