Author: Jen Rios

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:

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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.

A Switch-A-Roo

Tomorrow is supposed to be “Go Time,” but I have made the executive to do a switch-a-too instead and this is what I mean:

I have already written about Saturday night smelling hydraulic fluid when I was transferring back into my chair. I had my Mom call NSM on Monday and she was able to get an appointment for Wednesday. Wednesday, I had rented a van to get my haircut, but I’m just going to let my hair grow (the curls will come out now) and my Mom will drive just my chair to get serviced. I will be in my manual chair in the meantime.

I tore my meniscus eight years ago, so I don’t think it’s going to hurt that badly as I am waiting to get back into my power chair. After my Mom comes back here to switch me back to my power chair, she wi then go to Zerbo’s before she takes the van back.

Tonight, I was telling Sean about it and I told him that I will be the guy on Kim Possible! We started to laugh, and I had to look it up, because neither one of us could remember his name. He was like six at the time. I looked it up and his name is Wade:

I laughed when I found out his name! But my Mom sent me pictures that she took last night of the hydraulic fluid leaking. I will enclose two pictures here. I hope it gets fixed!!!:

I am reclined in the chair in this picture, and my Mom crawled beneath my chair and could see the leak. And then she took better picture:

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“Let the Curls Come Out”

OK, here’s the deal. “Go time” is supposed to be on Wednesday. But here’s what happened…:

I think I noticed this in the beginning of blast week, when I was reclining back in my chair to slide back so I am seated in my chair properly. It was creaking a whole lot! I told my mom that it sounds like the tin man. I got this chair in December and my previous chair NEVER creaked like it was creaking this past week. But on Saturday night, I was adjusting my chair a little bit and I smelled something, “Chemically.”

I texted my Mom last night to tell her to to call Ray or Sarah at NSM (National Seating and Mobility) and tell them that I am smelling hydraulic fluid. I then told her that I will forgo my haircut on Wednesday to get my chair looked at. I spent the morning devising the plan as I was praying.

I remember probably in February or March when my hairdresser noticed that I am getting curly hair. She asked me who has the curls and I told her that my Dad did. She also has curly hair and she looked at me and asked if my Mom would blow dry it. I told her that she wouldn’t and then she suggested product. I shook my head at that too. I think it was April when she cut my hair the length that is now. I get my curls cut off every single month. But now I think I’m going to have to just ‘let the curls come out’ and this song is in my head as I say that;

I think I might post a ‘grow out’ picture because usually just before I get my haircut, like now, I feel curls roll up on my head in the morning when I comb my hair. I want to know what it will look like a month overgrown?