This past three days have been really rough and the cold is not helping at all! But I just figured out right now at this moment that my pain level is at a 7 all the time now.
I’m hoping that it’s just from the cold that it hurts as much but I don’t think that 25 years is helping either.
#ItSucksToSuck!!!
#MSsucks!!! 😒😒😒…
I got all 3 doctors appointments done. This was so difficult!!!! I have to ‘splain ya about my bone density test, once I am recovered. But it got done!
I got all three appointments done! I talked to the podiatrist for the first time and that’s interesting. I met virtually with the pain clinic so hopefully my leads and tens unit batteries will keep coming as per my lawsuit settlement, and I had my bone density scan. I don’t have to leave the house until February 18. I’m hearing Dave right now:
I feel the crash and I am so excited to sleep!!!!!!!!!
My hair is cut and my eyebrows are waxed.
Man, I am exhausted!!! I have one more day though. I am getting a bone density scan tomorrow at 3:30. I’m pretty sure that I have osteoporosis in my left hip as well now. I’ll find out tomorrow and I will speak to the Endocrinologist about it next month.
I heard these two songs while waiting to get my haircut nd I really dug them! It’s from past life and one that is kind of difficult for me to remember. I used to be able to carry a tune!?!…
This first one I was in college, undergrad. I think I was smoking around this time for a short bit:
This one goes way back to middle school Jenny:
I’m seeing three different doctors this month. I just saw my podiatrist, I virtually see the pain clinic doctor tomorrow and I get a bone density scan on Thursday. I’m already tired. But this is a 3 fer, so I am focused and dialed in.
It’s the eve of ‘go time.’ ‘Twilight sleeping’ tonight and this is all going to happen before I get paid the day after! ‘Splain ya later.
Sean came over today and we watched the Rams Bears game. It was a good time and I’m glad that they won! It sets up a Sean Bowl next weekend and I’m kind of excited. I’m sure that Sean McVay will be victorious; at least that’s what I hope!
So, I think I got a podiatrist appointment at the exact moment that I needed it! I didn’t even know that I needed it!
My Mom and I figured it out. I had been wearing tennis shoes from a running store since about 2020. I would wear athletic socks when I wore them. Those same socks do not work out when I’m wearing my current shoes my ‘tap shoes.’ I am wearing those ‘tap shoes’ now because my feet are sick.
That is the reason why my toes hurt so badly the other morning! I was wearing Sean‘s thin dress socks that he had from high school and because they were not thick enough, my toes started to attack me because my nerves were going insane!!!
So, this is what we have to do now. When my Mom puts me into my bed, I have to wear the dress socks because I have to wear my shoes to transfer. When I am going to sleep, I already have my compression socks off.
But then when I get into bed, she has to change my socks because I need that thicker sock to protect the nerves in my toes. We do the inverse in the morning! She has to take my thick socks off and put my thin socks on before she puts my shoes on. And lastly, once I am seated in my wheelchair in my living room, and have taken my morning vitamins, she puts my legs up to keep my heels up and notnot resting on anything. That’s still a thing from my pressure sores from ‘22. It will be that way for the rest of my life.
With these extra steps with my socks, Itold my Mom that I feel like I am in Mr. Rogers neighborhood!
So, I have a whole bunch of stuff to talk about and it has to do with the neuropathy that is insane in my feet! It hurts pretty badly!!! But, I can avert my attention to something else:
My brother Dave, brought over Mexican sweet bread a little while back. It was from a different place and one that I did not know so my Mom took a taste of the cookies before offering them to me.
She told me that the chocolate one was okay and I told her that I would have one with dinner. Sean was over and he took a taste of one of the quarters that she cut my cookie into.
Sean was leaving just before I started to eat and he told me that the cookie ‘tastes like cocoa wheats when it’s not as sweet.’
Well, I never made Cocoa wheats for Sean. My mom did. She made it for me when I was a child! We were talking about that today. And I told her I never made Cocoa wheats or Cream of Wheats for Sean and she kind of looked offended, as if I was thinking I was better than that.
Then I told her, “I never made it because you have to stand at the stove and stir it for a while. My Mom said, “It wasn’t for that long.” And I countered with, “But, when you’re disabled…”
But back to the cookie, it tastes EXACTLY like how I used to mix my cocoa wheats as a child! I saw myself maybe like in second or third grade playing in the backyard with my brothers, Jimmy and Dave on a snow day. My Mom and I were talking and I told her, “You know, when we would eat our Cocoa wheats with a piece of toast. If you get a nice piece of buttered bread, and the right amount of Coco wheats, it is delicious!!!” She didn’t know that we did that and I told her that my brothers taught me to do that
I thought about that today, rather than thinking about the neuropathy sensation that I am currently having and I’ll talk about that tomorrow. I am basking in my memories of being a child on a snow day!!!
Today, I was awakened by the feeling of both of my big toes being pressed. It hurt. I didn’t like it.
I used to sleep with my compression socks, but now with my disease progression, that doesn’t work out like that anymore. I spoke with my Mom and we are going to talk to the podiatrist about this.
it will really stink if I have to wake up until Tuesday with my toes feeling pressed because that was not a good way to wake up at all! I hate waking up in pain, but that seems that’s how it will be for the rest of my life…
#ItSucksToSuck!!!
#MSsucks!!! 😒😒😒…
I awakened early today because my Mom got her hair done. I must tell you that this twilight sleeping I did last night is rough with so much precipitation today!!! My body feels crazy!!!
I also awakened with a strange feeling in the heel of my right foot. It scared me because it almost felt like when I had pressure sores.
I told my Mom and then she got to work. I have told her so many times that I do not know what it is like to have a subpar caregiver. She is the best!!!
I had pressure sores from April to November 2022. I don’t believe the wound care nurses got here until July. My Mom took care of it and it worked out. I’m grateful that I could not feel how painful it was with my neuropathy.
I did have an emergency room visit I think in July because my dermatologist thought that I had Mercer. I was still wearing my compression socks then so my Mom pulled my compression sock off my foot and pulled the scab as well so they could see that I did not have Mercer. Thank God!!!
After that, I stopped wearing my compression socks until I could no longer do it. I was so grateful that my heels healed at that point, that wasn’t until November.
My Mom kept the visiting wound care nurse’s phone number in her phone. She called her today. She told her about my foot. I think the best thing is that I have a podiatry appointment scheduled for next Tuesday. The 20th.
My Mom was kind of freaking out this morning about wanting to call the pain clinic about my foot or maybe dermatology. I told her to just wait. I have an appointment with podiatry and we will discuss this then.
I love that Sonya, the wound care nurse remembered me and my sores. She says it’s okay to wait until Tuesday to discuss my feet. She also offered that she knows a visiting podiatrist. We called the office today.
What really shocked my Mom and me as well was that she called and that doctor is deceased. He was only 66 years old.The woman my Mom spoke to had worked with him for 33 years. That made me sad and I’m offering prayers for this doctor.
She texted with Sonya and she gave us a different doctor’s name and number. I told my Mom that we should just keep my appointment for Tuesday because that’s already figured out and will have that doctor in case I have further problems with my feet. I WILL have further problems with my feet and we will call the doctor when that happens.