Category: A Bit Of Randomness

I remember back when I was in middle school or even high school, my Dad would take 22 pills a day. I remember that because he used to line them all up on his lower lip. Once they were all lined up, he would take one swig of water to wash them down.

I’ve been thinking about that for a while. I take more than 22 pills a day. But unlike my dad, I am NOT on a liquid intake restrictive diet and I am not on dialysis either. I realized this probably last week, mid week.

I take a lot more vitamins now. And actually they are called supplements. For dinner, I think I take seven a day. So midweek last week, I just thought I could pop the pills into my mouth with just a little bit of water. While I was watching a Hallmark movie. That did not work out well at all!!!

I think it was because I was her hurriedly doing it with not a lot of water but the partially digested pills ended up in the back of my throat and in my nasal cavity.

I think I was coughing for about 10 or 15 minutes and chugging water to get the taste out of my mouth and out of my nose as well. My Mom suggested that I spray my mouth with Thieves Oil that I have but I told her that is too intense and I don’t want to deal with that too!

After this 15 minute choking ordeal, and I will never forget what that tasted like in my mouth and what it felt like in my nose, I have chosen, just to respect the supplement taking! I constantly have to remind myself that I am no longer the same person that I used to be and I no longer possess the same abilities! #MSsucks!!! 😒😒😒…

Wednesday, a woman from the State of Michigan came to my house to discuss adult caregiving. It’s like that now! We received a letter in the mail, stating that she would be here on Wednesday. It would be between 10 a.m. and 2 p.m.

Right off, that time doesn’t work for me at all! But I made it happen! It was difficult for sure! She did not arrive to my house until about 1 o’clock? She stayed here for about a half hour and she asked me about five pages of questions.

Here’s the thing, I have been going to my neurologist for the past 24 years, every year. I was told to come every six months but as a single mother, who was a teacher, I could only afford the $25 that it cost me to see the specialist once a year. But now, I am so far gone that I completely know how to handle it. Not that it’s easy at all but I’m handling it.

I answered, “Yes” to every single one of her questions she asked me about my weight and she, too, said that I have a good weight. That’s the only second time I’ve heard that in my life! She asked me a lot of questions about my skin and I told her about my pressure sores from April to November 2022. I thought it was odd that she asked me about brushing my teeth. I told her that I have an electric toothbrush.

She asked all kinds of questions about how much medication I take daily and my Mom and I answered them without a problem!

I think it was in 2014 when I got fitted for a custom manual chair. I was still working then and I remember the litany of questions I got being so uncomfortable for me! Thinking about it, a decade later, it’s not a problem anymore.

Toward the end of her visit, she told me that there is a, “code” on my account that is preventing her from paying my Mother for the care she is giving me. She then told us that she is going to open a new inquiry or something about this and she told me that it could probably be February before it gets resolved.

Red Tape!!!

I don’t understand how this happened because I was a teacher when I was working, so I was not rich at all. This woman looks like a very seasoned person who has been doing this job for a while, so I hope she can figure it out.

When she left, my Mom closed the door, and I looked at her and told her, “I said ‘yes’ to every question she asked me!” I let that statement sink in for just a moment before I looked at my Mom and said, “This is sad.” My Mom hugged me as I started to cry.

I told my Mom this afternoon that it kind of feels like I’ve been punched in the face. She agreed. I never thought my life would be like this, but of course it would!

I am foregoing my haircut in November to take my chair to get its new actuator and pelvis stabilizer. It’s in the hydraulics at the base of the chair and a seatbelt. So, I have a lot of time to think and I have a lot on my mind right now! I’m not even sure how to navigate through it right now but it’s happening… it was a rough day today…

Last Wednesday, the woman from the state watched me struggle to sign two forms. My Mom apologized for how terrible it looked but the woman just said, “It’s okay, I’m a witness.”

I thought about that today and as I was eating my lunch, today way Day 299 in the Bible in a year, it’s my third time through the Bible and there is SO MUCH PEACE THERE!!! Fr. Mike talked about being a witness and that made me think of that woman from the state.

I think this happened last Wednesday; just after that woman from the state came to my house. It’s taking me this long to really begin to digest it.

This was only the second time that I cried like this since I was diagnosed on December 28, 2000. But thinking about it, they were two completely separate reasons why I was crying.

I remember that I cried when my Mom was driving me to work in October 2016. It ended up being the final day that I went to work because I needed surgery. Again. On the SAME knee!!!

I cried then, because I was in so much pain because of my knee. But last Wednesday, I was sitting in my bed and the tears came over me so quickly because I finally realized that now, I’m scared. Pain has been a thing for me these past 23 years and I just deal with it but; this time, I don’t know what to expect.

I said that to my Mom as I was sitting up in bed. She hugged me and kissed the side of my forehead told me, “I’m here with you.”

That definitely brought me comfort because that’s what God said to Job. We are just people but I’m glad that my Mom is with me because I’m so scared.

I saw this commercial and started to laugh!!! I used to write this on my Secret Santa list all of the time at CCA! My kids thought that was a dumb gift and I would ask, “Is it really? I’m going to use it, now I don’t have to pay for it!” I actually used write the Target brand toilet paper but being in a wheelchair for as long as I have been, I needed better quality toilet paper.

Each year I got a pack at work, I would sing its praises to my colleagues! Sean has told me that I have ruined him because he got spoiled from this quality toilet paper.

I have been thinking about having Sean since Halloween! But one thing I remember, the night nurse on November 1 was Irish. I really liked hearing her talk and my Mom stayed over at the hospital with me that night.

I spent November 1 in and out of coherency and I felt terrible the whole day. My Mom stayed and just told me to scoot over in bed. So I did and me, Sean (who was inside of me), and my Mom were sleeping in hospital bed.

My Mom left while I was sleeping because it was a Friday so she went to work. When I awoke, that nurse with the Irish accent was tending to me again. she told me that the doctors would be around for their rounds at 9:30. I still didn’t feel well!

Two male doctors stood at the doorway, and one of them walked in and asked me how I was. I remember telling him that my back hurt and he pushed on my left side and then my right side and both times hurt!

He pulled the paper that was coming out of the monitor and looked at it and then looked at the doctor in the hallway and told him, “Labor and Delivery. Stat.”

I remember being so surprised because I was not due for another eight weeks and that nurse with the Irish accent told me, “Don’t call your mom.” I remember her saying that to me, but there was no way that I could do that!

Immediately, I became a character in ER and nurses ran in messing with my bed, and one of them started pushing it down the hall with another nurse running ahead of her to push the button to open the door.

I have never really realized how emergent that whole situation was! The nurse told me that they would come around at about 9:30. Sean was born at 9:38 a.m. I didn’t get to meet him till about 6:30 in the evening and that’s when I told him, “Hi, I’m your mom.”:

I am seriously hoping that what happened yesterday was a one-off. A couple things happened yesterday where it was obvious to me that I cannot control my hands and any longer.

I have been taking an ibuprofen 800 every night since I had my second knee surgery in 2017. I take it when I am getting ready for bed, and I take an Atkins peanut butter cup with it.

Well, last night, I could not open my pill bottle with my ibuprofen in it. I tried for a little while, I always try for a while. As my Mom was walking out of my room, I just helped the bottle up to her and told her that, “I can’t open this.”

She opened it and gave my pill. I tried opening up the packaging to my peanut butter cup. It takes a little while, but I can open it. That is except for last night. My Mom just cut it open with scissors.

I sat there in my chair, eating my peanut butter cup that takes three bites for me to eat. I was quiet. It really stunk that it could not open them yesterday but I’m hoping that I can today. I was able to put my contacts in the first time today; sometimes that’s difficult as well.

I will get ready for bed in a little bit and hopefully, it was a one off and I can open my things with no problem today. It’s like that now. Most days I can do things but some days I can’t…

Last night, I was a a little bit concerned about trying to open my pill bottle for my ibuprofen. The pill bottle has a lid that takes both hands to open.

I was more than surprised when I was able to push the tab down with my right thumb to allow me to use my left hand to twist the cap off. I let out an involuntary, “Success!” my Mom wasn’t even in the room!

I took my pill and thought for a moment as I peeled back the foil of my peanut butter cup, so then I could clearly see the sean where I pull it open. I was able to do that as well! That also got a, “Success!”

I do not know if I will be able to do that again tonight but the fact that I did it yesterday made me so happy! It’s serious now for me. It’s a daily basis thing to see whether I can or cannot do something. That is a unnerving to say the least!!! But, I like that I could do it yesterday! We’ll see about today…

My eyes have been an issue for me since I was pregnant with Sean! I clearly remember Dr. Skarf telling me that I had optic neuritis in my right eye, but he can’t do anything for me because I am, “super pregnant.”

I must say that I only saw Dr. Skarf three times since I was pregnant. He has since retired. He retired in December 2023. He was my neural ophthalmologist.

I started seeing my optometrist in 2021 as well, I think. He is a very thorough doctor and he works with Dr. Bansal. That is Dr. Skarf’s replacement. I was supposed to see her last April or something but she changed the appointment. to the Troy office and not the downtown Detroit office. As a homebound person who needs to rent vehicles to go to my doctor Appointment, that will not work for me!!!

I had read an article saying that younger doctors want a good ‘work-life balance,’ and older doctors tell them that that’s NOT the job. But I guess that is how it goes now. My new neural ophthalmologist is in clinic downtown once a week. She is only there until 2:30 pm.

I thought about this and I started freaking out that I hadn’t gone to the doctor when I should have. I have never had MS for this long, but I will tell you, they are not going to cure me ever and I will just go see the neural ophthalmologist when I can. that means, on February 1, I am going to have my Mom call Dr. Bansal’s office to secure a 2:30 appointment for me on May 28.

She also has to call on January 2 in the morning for a dermatology appointment sometime after April 20. I have been renting vans consistently since 2021, they are our peeps! we’ll just have to arrange a nighttime pick up or something…

Disease progression with my eyes: I am not sure how to convey properly to my Mom that when she stands behind me on my right, I can no longer see anything! that’s a bit startling for me…

Today was my third Irish themed Hallmark movie and I got to see this one right at the premier!!! This one was called ‘Tis the Season to be Irish I think that it is my second favorite Irish movie that I have seen. The first one I saw years ago was the best one. The second one. was not so great but I like this one because the house they had in question reminded me of, A Quiet Man cottage!:

I told my Mom today that I have been watching Hallmark movies for 15 years. Since I moved into my house in July 2009, I saw A Country Wedding
and immediately fell in love!!! I think I have seen that movie about 20 times by now, and I just have to watch it when it’s on!!!