Month: August 2024

A Change in Routine

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…

“I Hate Feeling like a Zombie.”

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…

23 Years?!

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!

So it Seems?!

So, yesterday. It was terrible, right?! At 95° outside, tears just streamed down my face all day long! I was so uncomfortable that’s just what happened! If I was not crying, I was just sobbing silently with my shoulders shaking because it was miserable!!! I talked to Sean yesterday and he agreed with me that it was so hot because he was working in it and he was concerned about me. I was very concerned about how much longer I would have to take it and I saw this meme on Facebook today:

I added this comment to my repost:

Screenshot

This is the last of my Spring/Summer, chapstick. I used all four tubes!!! (I have no idea how I did that with the picture by the way!) I was just telling my Mom today that I can no longer control my hands even more so and it’s a little bit startling!

AnyWho, I think I have about six or seven days to use the rest of this chapstick before I pull out my Fall box. It’s sitting in the box with my remote controls right now.

I really cannot believe that I used all four tubes but this heat was insane and the fact that I am homebound, I think my chapstick addiction has come out! I read that some years ago about people being addicted to chapstick, but I think my body hurts so much all the time that I need a little bit of a reprieve from that so I smear chapstick on my lips constantly and rub the softness of them together A LOT so it seems?!

“It’s Hot as Hell!!!”

Well, it looks like we need to do that third preventative for my urinary tract health. I just got the lab work back today. But I am most startled by the heat right now. STILL?! It hot as hell!!! I say that only because in the heat, my body cannot function at all!!! I sat here at 92° and did not move. Even though I am sitting in air-conditioning, my body can feel the heat outside because I need new windows. I drank my lunch. I really don’t think that I can afford to drink my lunch, but it was too hot so I cannot force myself to eat food.

STILL?!

I am still drinking the cinnamon-y mouthful of dirt every morning and I have just added the silver to my morning Yeti of water. Tomorrow. We are slated to start yet another preventative. At least that’s what we’re saying right now. Maybe it won’t happen tomorrow because I’m tired today and this heat is insane!!! I can’t believe this?! STILL?!!!!

Thank You!?!

I pillaged today and it still took four rosaries. I think I’m just getting slower and the fact that I have more pills to distribute adds to the length I think. I have been breathing easier the past few days and I thought Fall was coming, but then today happened. And this 85° is insane!!! But I received a package probably in the beginning of July before I was unable to function. I asked two people who I thought sent it but they said that they didn’t, but wish they did.

My Mom took a picture of me right when we received it. So message me so I can thank you properly!:

“Lighter”

So, I went to see Dr. Clark in July and he changed the dosage of a couple of my supplements and he added colloidal silver. Yana told me before we left that we can get it next month because she knows that both me and my Mom are on fixed income.

“Go time” for me this month consisted of me being Wade from Kim Possible! but my Mom was able to pick it up Yesterday:

I didn’t know what kind my Mom got from Zerbo’s, but this was the actual bottle that Yanna gave Dr. Clark to test on my body. I was tested for 25 drops a day. He told me just to add to my water. I drink about one and a half to two Yeti’s of water a day and my Mom put it in my water this morning.

I felt my eyes get really big the first sip I took this morning after taking my morning vitamins, started my shake, and took Goli. It didn’t taste any differently but once I swallowed it, I looked at my Mom and told her that it tastes “Lighter.”

I don’t know how else to explain it, but it feels different on my teeth. Different in a good way I think! Well, I will have more tomorrow, and for the rest of my life, it seems so I’ll have a lot of time to ponder it

NEVER Thought

Today was ‘go time,’ but it was different. I was not leaving the house at all but my chair did so that’s why we needed the van rental. My Mom took my chair out to Troy today and it’s probably going to take three weeks to order the part. it’s very helpful that my Mom records technicians when they are explaining so I can hear them in the recording when she gets back home. I understood what he was talking about as well.

She picked up my ibuprofen prescription from Meijer and she is at Zerbo’s getting supplements. My orders start coming in tomorrow. Amazon is going to be in two deliveries as well as Target. I seriously NEVER thought that my life would be like this in 1 million years!!! But it is! ‘Startling’ is STILL the word I prefer to use.