Month: April 2023

[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…???

Proud Mama

I was talking with Sean this evening and I asked him about work. Sean has just started his second season with an irrigation company. He also has been plumbing with both of my brothers (and my nephew now) since he was 14.

He was telling me about a job he did today and then he started speaking a different language because I don’t understand any plumbing lingo. Something I learned today after my brother has been plumbing for 25 years, Sean told me that ‘plumb’ is Latin for ‘straight.’ Wait. What?!

He told me that my brother, Ray, told him that and I said that it would not be necessary for my brother to tell me that ever but it’s necessary for him to explain stuff to you as he’s teaching you the trade. He told me that he sent picture to my nephew and my brother. Wait. What?! I told him to send it to me! I asked if I could post it and he hesitated and said, “Sure” and he said that people might call him a hack but then I told him not MY people!!! I have to share my first “Proud Mama” picture!?!

He sent the picture to me and said to let people know that it is his fifth solo soldering job. He explained it to me and I think you should look at the section of the pipe that is next to/just below the blue handle on the right. He told me that he cut the pipe, soldered it, and sanded it a little bit and I told him that it was beautiful and I am proud of him because I am!!!:

My Beeb did that and I am such a proud mama!!! 😍😍😍😍😍

I Should Have Cried OR From Heat to Air

I woke up mid morning so my Mom can get her hair colored. I had a really great appointment yesterday and it was vindication of everything I have done in choosing to care for my disease for the past 22 years. I sat in my wheelchair just as my Mom was getting my shake and my water together. When she walked back into the living room from the kitchen, I told her, “I should have cried.”

As a tested my water, I told my Mom that I cried a little bit yesterday when she was going to get the van but I should’ve cried more afterward because my body is crazy right now!

She added the lemon drops to my water and handed me my nutrition shake. I told her that I cried just a little bit in anticipation for the day but I had such an excellent appointment that I didn’t cry afterward. I was tired but I felt good that I’m doing the best thing for me and my disease.

So, today, I am just reclined in my wheelchair without my contacts in trying to recover from yesterday. But then here’s the thing…:


Wait. What?! Just as my Mom was leaving the house, she put the air conditioner in the window and turned it on because that was the temperature 12 minutes ago. I am just laying here and I put my winter hat on because having air makes me cold but if we did not have it, I am pretty positive that I would die!