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!!!
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…
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!!!
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…???
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 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!
I had an appointment today with my naturopath whom I have not seen in eight years but I have been ordering supplements from them for those eight years. I just have had MS for 22 and I think I needed to adjust my supplements a little bit.
It is extremely difficult anytime that I leave my house. I have to go to my doctors appointments and get haircuts and those are the only reasons that I leave my house now.
It is extremely difficult anytime that I leave my house but I HAVE TO go to my doctors appointments and get haircuts and those are the only reasons that I leave my house now.
I have a hard time embracing that! But, I am a scheduler and I have been doing that since 2021. I have my entire 2023 year planned and it’s for haircuts and a doctor’s appointments. I told my Mom that this is the way we have to do it because I still have to be a part of the world!
I was nervous about this appointment because I hadn’t been there for so long and I was in a manual chair the last time I was there. My Mom has told me that I have a good handle on my chosen care for my disease. It definitely is not easy! I am just now realizing that and it sucks!
Just before we left for Dr. Clark’s office, my name Mom noticed that I was nervous and she told me that it is going to be fine and that I should not be surprised if I am healthier than I think.
My Mom was correct. Of course! He did not add much to my regiment of supplements but he added helpful things for me. I see him again in May. I still have to gear up for my haircut on April 19. I am happy that I don’t have to leave my house until then.
i sawmy naturopath in person today. I have just been ordering supplements for the past eight years! It was a good check up!
Dr. Clark told me that I look the same and he said that I am doing very good with my health! He added two supplements one as needed and I left there very relieved!
Don’t get me wrong that I am extremely exhausted because I am! When we left Dr. Clark’s office, I told my Mom that I think I am going to cry when we get to my house. I am so tired but the tears are not coming! Maybe March was a one off? I still need to write about that as well.
On the way home from Dr. Clark’s office, I saw a tweet but when I clicked on it it had been deleted. The tweet caught my eye because it was from the NFL net work and I just saw the words “Matthew Stafford” 😍😍😍😍😍
Now, I just catch clips on Twitter because I can no longer wake up early enough to watch GMFB. That saddens me but Kay and Nate are gone so that saddens me as well!!!
This was one of my Facebook memories and it got me thinking about pitch perfect because of what Peter said at the end of his segment. I thought to watch the movie but I am tired and I don’t think my eyes can handle that so I will just post a clip of the song!:
Today is Easter and we watched Ben Hur with Sean yesterday and my mom and I watched Steel Magnolias today. I have checked off all of my Easter season movies but this Easter doesn’t feel good.
I am reminded of one Easter, I think Sean may have been seven or eight years old but we had to have the kids wear their winter coats outside for their Easter egg hunt! Sean and I have been talking about how much fun it was when my nieces and nephews and Sean had Easter egg hunts.
This Easter, I finished my vanilla bean chapstick yesterday so I started using the pomegranate one today:
It may be Easter today and I have switched over to my spring Chapstick but I am still wearing my winter hat indoors and if the kids had an Easter egg hunt today, they will not be wearing their coats but seriously?!:
I know that I have been having a difficult time maintaining my body temperature but seriously?!
This song has been in my head all day long and because it is 2:25 in the morning, it is Easter. Now I can post this song. I am so old because this was high school!: