Author: Jen Rios

Chapped

So this happened on Wednesday:

Normally, when I am this close to the end of a Chapstick tube, the plunger falls out of the empty tube so therefore, I need to have a “Bag o’ chapstick” which always reminds me of my student who noticed and commented on my “Bag o’ Lotion.”

I am absolutely startled at how quickly I am going through Chapstick but I guess that is part of my progressive disease. My lips feel so chapped all of the time! I amuse myself with all of my different flavors according to season.

I smelled, the hint of spring on Thursday, so once I finish this pomegranate, one, I will move on to my spring flavors!

I Needed Her.

My Mom asked me the date today. I had forgotten this memory until I told her that it’s April 21. It was on April 21, 2022 when I finally realized why my Mom was living with me during the pandemic.

I needed her.

If I recall correctly, and I am almost positive that I am correct, but it was on April 21 last year, my niece, Ysi’s birthday and I remember my Mom leaving my room as I was going to sleep because she had just tended to my ever-growing pressure sores and I think that I was crying. I was crying because they hurt so badly and I think at that time they had not gotten to the biggest point yet.

We just finished “Go Time” for April, and it was more seamless than March, because March was absolutely terrible and I’m still trying to process that right now.

One thing that I will say is that I am just about fully accepting the limitations of my current life. I don’t like it at all but I’m good at it. I am a scheduler and I plan things. I just never thought that would be the extent of my life.

Based on the fact that I needed to re-calibrate and segment my day, because my brain stopped when I tried paying my bills in 30 minutes like I have been for my entire life. I paid my mortgage and signature line today.

I ordered my Amazon and Target orders on Wednesday and Thursday. I had to get my compression socks so I didn’t think about my bills until today. I will pay more over the weekend I think.
my brain is slowing down and it looks like I need her still.

[NotSo] Rando Tune #38

It was a successful, “Go Time” but I am thoroughly exhausted! We got three new pair of compression socks today and I am super excited to wear them again!!!

We explained to the women working there, how I had to NOT wear my socks from April to November 2022, because I had pressure sores and it was terrible!!!

I needed to get resized, because since I have been seeing my nutritionist, I have gained 4 pounds, but I have since stopped seeing her and she told me to call her again when I start losing weight again.

I never thought that my life would be as small as it is right now, but I don’t see it changing from here on out. We got our haircut yesterday and I talked with a woman as I waited. We seem to have the same appointment time because my Mom recalls seeing her last month!

As I was talking with her, a song came on the radio, and I hadn’t heard in so long! This song is from Songs About Jane, you know, before they sold out, but I loved hearing it!:

Gearing Up

I slept until kind of late in the day today. I almost felt rested. I thought that was good though because tonight, I will be in twilight sleeping and as well as Thursday so I will crash on Friday.

I’m quiet today and gearing up for Wednesday and Thursday. I will formally implement my new recalibration and segmentation of my, “Go time.” I guess That I will attach these two songs because I think I need to hear them right now because go time for me is starting to get more difficult…:

I switched up the order of these songs in this post for this month.

This a a Fact but…

I saw this on Facebook when I awoke:

This made me laugh because it is completely true! I have lived in Michigan for my whole life and this is fact! But can you imagine what it doing to my chronically ill body… I think that’s why I did not sleep well last night but I am not feeling well at all but Wednesday starts ‘go time’ for me…

Adaptable

My Mom has always been quite adaptable for my entire life! Because I am still rocking the window air conditioner, I turned it on a few days ago but tonight, I cannot handle this!:

My Mom pulled it out of the window and placed it on a dining room chair. This is how it is for me for the next couple weeks. #MSsucks!!!

Small

I pillaged today and it took me longer than it normally does. It is getting more difficult to control my hands and that kind of stinks.

I told my Mom that I am slowly beginning to accept this but I can’t even touch embracing it. My life is very small now and I’m OK with that. I need some more time to think about that…

#MyGirlL: Hurt Our Souls!!!

My Mom gave Leia her shot today. And I think that her itching may be behind us. I am mom commented on that and I agreed with her. I told her it hurt my soul to hear her scratch so much and my mom agreed with me. My Mom sent this picture to me today of the good old days of this sweet girl:

This picture is from March 14, 2022 before her skin problems really got bad!!!

Silence.

My Mom went to get her hair colored on Wednesday so I spent Wednesday reclined in my chair in silence. I mindlessly played solitaire and 3-D tile match. I did not feel well because I left the house on Tuesday and I think I wasn’t prepared for me to get such a good report.

Dr. Clark’s appointment was a vindication for me that I guess I know what I’m doing regarding my supplements and what I eat. We told him about what I eat now and he liked it a lot! He is most impressed that I have not been hospitalized since my diagnosis.

The silence continues today even though I did talk to Sean for a little while. I think I am starting to feel better but I’m going to have to do it again on Wednesday. I don’t think that I was prepared for how long it would take to recover or how unable I would be but at 22 years, I think that’s where I am.

Before I went to sleep last night, I told my Mom that I was sitting here in silence the whole time she was gone but I wanted to see this video because I remember watching it a lifetime ago now…:

I love this cover of this song!!! I needed the silence though. I guess we’ll see what tomorrow brings…???