But today, I had a change of plan. Last week, as I was distributing pills into my pillbox, my hands felt very uneasy and I couldn’t control my fingers. I thought it was because I was drinking a shake instead of eating dinner. I ate dinner tonight before I pillaged and my hands still got shaky as I was counting out the pill that I take 70 of a week.
Right now, as I am sitting here, thinking about how difficult it was for me to pillage even AFTER I ate dinner, it just points to disease progression. That’s what it is! But now, I am counting out 35 pills a day. I am going back to my naturopath on the 18th. I’m going to have him dose me for some of my supplements. I feel that my needs are changing and it’s a little bit scary!!!
I had already posted this one because Fall was my favorite season even before I was diagnosed with MS!!!
I made the executive decision today, actually yesterday, to stop using my cucumber mint chapstick, because there was just a little bit left and it was kind of hurting my lips so I threw it out and this morning I started pomegranate.
So, it is officially Fall for me now! I’m sure it will get to be winter way too fast because I currently am wearing socks instead of my bare feet. My Mom broke her pinky, the base of it, so I’m not wearing my compression socks right now.
My next haircut appointment is for September 18 and I have also made an appointment with my naturopath that day. So, I have NOT left my house since July, but I really want to finish this Spring/Chapstick! I’m staring at my Fall chapstick box in my remote control box and I can’t wait! Maybe Friday?
I heard this song yesterday and it made me want to watch Bridget Jones’ Diary. The first one. She doesn’t even look like that anymore but I’m going to watch it sometime after Christmas, I think!:
Well, I woke up this morning, and I feel different. I feel differently than I did in the beginning of June all the way through August! This was horrible! I’m not even sure if it’s over ‘for real, for real’ but today I feel different. I can breathe a little easier.
Yesterday, my Mom told me that I was frowning when I woke up. She thought it was not a restful sleep. And I told her it IS NOT a restful wake up! I don’t even remember what waking up feeling rested feels like anymore!
I’ve seen so many memes on Facebook about the ‘Ber months being the best and now I totally agree!!!
I have always loved back to school but now that I no longer teach, I am loving Halloween more because Sean’s birthday is so close to it and I have time to watch Hocus Pocus now! At least I get a little reprieve from the horrible feeling in the heat But, the cold weather is coming probably faster than I want it but I am thinking out the fact that I am different from last winter. This disease progression is killer!!!
This song came up in my Apple Music playlist after my James Blunt playlis finished, I have been playing this song on loop constantly because… yeah…:
But for the last week, I have been listening to James Blunt because he showed up on my Apple Music playlist after my Train playlist finished so to him probably since the 21st August and these are my faves because I am in my second department doing the dishes and Sean is asleep:
Well, I pillaged today as I do every Saturday and there is a new development. This is something that I am still grappling with and trying to wrap my head around:
I am a person who likes, “same ol’, same ol.’” As a homebound person now, my life is completely routine. I’ve been talking about that with my Mom and I don’t think I’m upset about it but I think this new change is a little bit of upsetting…
I listen to rosaries on my phone so I can concentrate. I have gone from three rosaries to four because my dosage for my supplements changed in February I think. So, I fill one supplement for the week and then take a swig of my nutrition shake. (On pillage day, that’s my dinner).
But, here is what happened today, I was filling my pillbox with one supplement that I take 10 a day and that’s for my urinary tract health and just on the last day of distributing it, I felt my hands were becoming difficult to control.
After I finished distributing that supplement, I started thinking because the next supplement was 21 pills a week and then the one after that was 28 pills a week. I could still distribute all the pills for the week without my hands feeling strange. The next pill I distribute is a tablet not a capsule and I take 36th of those a week. That one’s for my bones. And my teeth. (Which, when you think about it, that’s the same thing because teeth are bones).
That is where I made the executive decision to stop distributing my pills for Tuesday, take another swig of my infusion shake, and then on Saturday I did the same thing.
But, I think this is what is so startling about what I did today. As I was telling my Mom about it, I asked her if she remembered about that doctor appointment we had in Livonia to prove that I was disabled. I asked her about quarters on the tissue, and she remembered that as well. I told her that is what I thought of and I saw myself actually doing it just before I was approved for Disability.
I think I’m just startled at how difficult everything is now. I don’t think this heat is helping at all but my disease IS progressing and I can’t believe that I can’t do things for too long without reinforcement of nutrition and that kind of stinks…
Yesterday was super warm, and I did NOT feel well at all! My mantra in this heat for this entire summer has been, “I’m hanging in.” And man, has it been difficult?!!! Last night, when we were almost ready to get ready for bed, I told my Mom in a monotone voice, “ I hate feeling like a zombie.”
Because that is how I feel. I feel it in my face, I am dragging so much! So, you know exactly what song was in my head immediately after I said that?! It was so warm that I did not even look it up on YouTube yesterday. I looked it up today before I started drafting this blog post:
It’s been a while since I have watched this music video for sure! One thing I noticed that is different from my 12-year-old Jenny’s impression of this video is at 12 years old, I could not understand why she did NOT have a flat stomach?!
But now, watching this video right now as a 42 year old woman who has had a child I completely understand why her stomach is NOT flat! Duh!!!
I had a hard time believing that today was even warmer than yesterday, and I had to force myself to eat my lunch at 90° weather! It took me so long to eat my lunch! But it won’t be summer all year so that is something to look forward to. The temperatures have come down a little bit in the evening, so I can breathe a little easier now.
I watched the video today before I posted this blog post, and as I was watching it, I started to cry. I’m not even sure why I did but I think it’s probably the heat but I vaguely thought about the fact that she is dead now…
I am reclined in my chair with my eyes slightly closed, and this song just had to get an encore presentation! This song reminds me of summer! I’m so uncomfortable!
I have NOT left my house for all of August! I had a virtual appointment with my neurologist on the 9th and I forwent my haircut/eyebrow wax to get my chair assessed. I did receive the bill from NSM and the actuator and pelvis stabilizer replacements should be in sometime next month. I will have to coordinate the van rentals. Maybe we can do it on one of the days we’re already getting the van. For September, I am getting a haircut, going to the dentist to get our teeth cleaned, and going to the pain clinic regarding my knee.
Then, I have a Visual Field Test on October 1. It’s been a while since I have had a Visual Field Test. And now, my Mom will accompany me to my appointment. My insurance changed while I was working so I had to leave my normal eye doctor and I went to a different place in Lincoln Park. I had two Visual Field Tests there, but I did not see the results. The doctor did not show me the paper like Dr. Skarf did. I was not notified when I was diagnosed with abatis in BOTH of my eyes.
I remember when I saw Dr. Skarf for the first time. It was at Henry Ford Fairlane and I was about five months pregnant at the time. It was the first time that I put my face into this ‘dog cone’ dome thing and I had a little clicker in my hand. (each test I have had, they always hand me the clicker to my right hand, and then I move it to my left and tell them that I am left-handed) I was told that each time I saw a light blink, I should press the clicker.
I remember that Dr. Skarf showed me my results. It was a picture of two circles that were my eyeballs. On the right eye, like a crescent on the outside of it and it was just a little bit gray. I asked him about that, and I was diagnosed with the optic neuritis in my right eye that day. He told me that I am ‘super pregnant’ and there is nothing he can do for me. He told me to come back after I had the baby and he will help me. He also told me that I shouldn’t be really concerned because he has seen people with full black parts in both eyes.
I’ve been thinking about my impending Visual Field Test (with Dr. Bansal because Dr. Skarf has retired) in this miserable heat! My vision gets a little wonky in the heat, but I do wonder what my eyeballs will look like!?! I have already told my Mom the story about what my eyes looked like the only time I saw it. I am concerned about black spots in both of my eyes mostly my right eye! It’s been 23 years?!
I am back to my original eye doctor through Henry Ford now that I have HAP Senior Plus insurance because I have been disabled for so long. Which is a little bit crazy because I am only 42 but being on HAP Senior Plus pays 100% for my cleanings and x-rays, which is the extent of my dental work! That’s a first!
