Category: A Bit Of Randomness

This category is full of randomness that really doesn’t fit nicely into any of the categories having to do with my road to walking.

Accomplished.

First of all, I can’t believe that my life is like this now, but it is! Let me ‘Splain ya what I mean and why I feel so accomplished today!:

I have been meaning to write about this from an article I read a few weeks ago now about people with chronic illnesses who wake up and have the same exact day from the day before. That is me right now. I’ll write about that soon hopefully…

But, back to why I feel accomplished!:

My Mom got me out of bed this morning (and it was actually morning! It was like 10 o’clock) and I thought about what I needed to do today. I know I had to make a few phone calls.

After I drank my nutrition shake, I decided to call Dr. Bansal. I called the ophthalmology department at Henry Ford and asked to speak to someone about making an appointment. As it turns out, we just leave a message for her assistant, Tamika. I decided to leave my phone number because my Mom was going to lunch with my aunts today.

The next thing I did was message my dermatologist. I had written about the fact that it is so cold outside and the fact that it is so warm in my house. Makes the air in my house really dry! Dr. Harris told me about that one he gave me the new contacts I wear now.

I messaged her because my skin is so sensitive now, 25 years into this b*tch, (I didn’t say that, but I thought it) I explained that my Mom coats my face with Neosporin. She puts it on my cheeks, under my nose, and makes sure to get my septum a whole lot! I asked her if I should be applying something different.

She should message me back in a few days. After I thought about that, I called Dr. Bansal’s office back. It takes a couple days for them to call back and I decided to tell Chris, who I spoke to, that I should leave my Mom’s phone number instead of mine because I’m not really awake during the morning hours at all but I can’t really handle that either.

Do, he took that all down and that felt good that I called two different doctors today. My dermatologist will message me on MyChart and Tamika should call my Mom tomorrow or Monday. That phone call is for an appointment that you need to make for May 27. I have to call in February. As I was waiting, it asked if this was a single annual appointment. In fact, it is!

It was already 4 o’clock, and I had finished praying, but then that got me thinking that I checked MyChart and it says I owe more money than my payment plan agreement. It just was charging for one appointment, but I had two this month. I saw the podiatrist and then I virtually saw the pain clinic doctor. Both of those are specialties.

it was super easy to adjust my payment plan. I spoke to Janice today and she updated in my plan so I will owe money until January 2027 at this point. It was really nice exchanging nice cities with her about staying warm in this cold. That was the first person I talk to in the day.

There is another specialty doctor that’s going to bill me for this month and then next month I have an appointment with my Urologist.

I felt really accomplished today even though I haven’t done anything. I really can’t believe my life is like this now but I’m handling it so I guess I feel pretty accomplished!

I HAVE TO Get an ‘A’

Well, today I woke up to Tamika calling my Mom and making an appointment for May 27 like I wanted. Now my first five months of the year our scheduled!

I did not write yesterday that my supplement came in the mail and my Mom got it off of the porch before she went out to lunch. I needed that for tomorrow when I pillage.

Today, I also called my insurance company today to check up on when my homeowners insurance is going to come out. It’s covered by my mortgage company. Things are more set than I realized. That’s good!

I spoke to a woman named Ashley from Georgia and I told her I was in Michigan. We talked about the weather and she exclaimed that it was going to be 18° this weekend!

I told her how to heat up quickly when she’s in the car. It has been something I have done all the time and I never realized that Sean took notice. He tells me that he tells that to everyone and it works! I told him to put his wrists right up to the vents in the car because that’s a pulse point and it will warm up your blood quickly.

The only reason I know that is because I am so sensitive to temperature changes so learning that he has helped me a whole bunch! Ashley said that she was grateful to get some ‘inside baseball’ from someone who knows something about the cold. I laughed!

My accomplished feeling continues today because I told my Mom yesterday that, “I have to get an ‘A’ in dealing with the life I have been dealt!”

I never imagined that my life would be 100% MS but it is now and I STILL have to get an ‘A.’

Scary.

I pillaged today. Yesterday, my head hurt; and it hurt in a differently than it has ever hurt in my life.

Today, while I was pillaging the left side of my jaw hurt quite badly. It happened a few times when I was changing the supplement I was distributing.

It just caused me to stop and put my hand on the side of my face. 25 years in, things are starting to happen. It’s all a bit scary. #ItSucksToSuck!!! #MSsucks!!! 😒😒😒…

Brown Eyed Girl

So, I heard this song a few days ago and it reminded me of a summer festival at Saint Alphonsus. I think I’m in fifth grade. My friends and I went to the gym because there was AC there! I remember dancing like crazy to this song and my friend also had brown eyes so it was fitting. I have no idea what made me think of this. But I’m liking remembering it:

“Low and Haunting”

I became a member of the ‘virtual front pew’ on week 17 of Ordinary Time 2021. I go to mass each week in my living room now. I used to just watch it on my phone. Something that I have known since I started going to mass here is that Fr. Mike is my contemporary. I think he’s three years older than me. He was 45 when I was 42?

I am on the fifth time going through the Bible a Year and I have just begun the Catechism in a Year and I really dig his message and most often; I cry. It’s cool though because I’m in my house by myself. I also will listen to his homily and Hallow multiple times before the next weekend.

I have already listened to this homily three times so far. But I am crying for a different reason. He talked about a Sia song that came out when I was still teaching and I was teaching Reading in my third classroom, which was a converted closet adjacent to the cafeteria, which was used as our gymnasium for PE classes.

The sixth graders played dodgeball on Friday. Something that everyone needs to know is that sixth graders at CCA understand that they are better dodgeball players if they scream so they all screamed at the top of their lungs for the entire class. Not a great thing when I am trying to teach kids to read on the other side of the door.

Fr.Mike referenced this song:

I really dug that week for Ordinary Time was the Beatitudes! Here’s Fr. Mike’s homily, which got me thinking:

I had never heard Sara Bareilles’ rendition of this song, but this song means so much to me because I heard it 1 million times every day well sixth grader graders screamed I was teaching!!!

A couple things I need to say before I post this video, it’s from her little black dress tour. I love that song! Absolutely love that song!!! I will put it here just so I can hear it again:

I never saw that video of her on tour with that song over playing what was going on. It puts this next video into context a little bit:

I’ve bawl my eyes out each time. I watch this rendition of this song. I think that it’s a bit cathartic, but #ItSiucksToSuck!!! #MSsucksTwentyFiveYearsIn!!! 😒😒😒…

Gone.

Disease progression with MS absolutely stinks!!! it really stinks this far into the disease!!! I’ve been drinking my breakfast for a number of years. I don’t mind it. It’s difficult to swallow that early for me anyway.

Well, I no longer can open my nutrition shake on my own. You know, when you are opening something and that little piece of plastic needs to be broken. Well, that’s too much for me now!

I am extremely happy that I got my mom a can opener for Mother’s Day a couple years ago. I got it for her because she said opening things was getting difficult. I’m glad this tool helps with what I needed for now.

Looks like that ability is gone for me now too. It is never coming back. That is a fact I am desperately trying to get okay with. I have to. But you know what was in my head this whole time as I grieve my ability:

in 2002, when this song came out, I was in college, on Canadian crutches, still driving, and thinking my life would turn out differently than it has. #ItSucksToSuck!!! #MSsucks!!! 😒😒😒…

Why I Bawled.

So, since last Sunday and after Fr. Mike’s homily, I have watched this video numerous times:

Let me explain to you why I bawled. I bawled because I no longer can use my ‘chest voice.’ I barely can use my ‘head voice’ now.

This song makes me bawl too because I remember being caught belting it out by 5 year old Sean and his dad:

#MyGirlL

#MyGirlL switched vets today. She has been having such skin problems for so long. The prednisone was proving to harsh on her organs so she was pooping blood. It was BEYOND scary!

So, her new vet is, AW Animal Hospital. She has been pink for the past two days, which has not set with me well at all because I know it hasn’t been comfortable! It hurts! My Mom asked why she is pink and he said because she is ‘inflamed.’

So, he gave her an injection and she is not scratching right now. I was so afraid and this is so promising!!!

She will have another appointment in three weeks. We talked to Sean as my mum was putting my socks on, and I told him that this is so promising because I was so afraid for her!

So, you know this song is in my head and I have to tag my sister-in-law and my brother by posting this one:

Bookends.

I started off this week making medical calls. I first called Meijer pharmacy and inquired about a shingles shot. Two people I know have gotten them. And I have heard that it hurts so I don’t want to deal deal with that in addition to what I already am dealing with!!!

The person I spoke to at the pharmacy told me they needed to check if I was eligible because I told her that I am 43 but I have had MS for 25 years. I waited on hold for a bit and when she came back, she told me that I am eligible, but that I should first call my insurance company to make sure that they will pay for it.

So, on Tuesday, I had my Mom call my insurance company. She called them just after I had awakened. As it turns out, it is covered. The woman at Meijer pharmacy also told me that it is a two shot regiment to get vaccinated for shingles. Two months after I have the first shot, then I can have the second one between two and six months after my first one.

So that is what I started thinking on Tuesday. I have other vaccinations I need to have because I have been immunocompromised for 25 years. I think that I will get my first shingles shot in March after my appointment with Dr. Chammas but I don’t think I’ll be able to get my second shot until June because I get my Covid shot in May.

So, I have been trying to think about my vaccination schedule coming up. This morning, I just got notice that the second specialist appointment went through from last month.That means that my payment plan needed to be adjusted.

I called them today after I drank my nutrition shake. I had to wait on hold for a little bit with them too because given how big my balance has become, they weren’t sure I could keep my payments as low as as they are currently.

That shocked me a little bit because I only have so much money a month! Luckily though, I can keep it the same, but I will be paying the hospital until June 2027.

So, I started the week out talking about medical stuff and I ended the week out talking about medical stuff in a different capacity. So this week was bookends for me handling my biz. This is becoming so much!!!

My Mom just read me the costs for my medical care for the past year which was more than I got paid my last year working. In March, when I see Dr. Chammas, I need to ask about seeing a vascular surgeon. They are the ones that handle the circulatory system.

It looks like I have to see my 14th doctor now. My Mom is concerned about how cold my feet feel pretty much all the time.

A Nice Time

The last time I watched football on TV was 2022 Super Bowl when the Rams won with Matthew Stafford as quarterback. My eyes are starting to be an issue so I would just check the stats on my phone. I would watch occasional highlights as well.

I don’t know what it was, but I watched football this year. Well, playoff football. I thought Stafford would go all the way, but he did not. Sean and I talked about Sam Darnold and we liked his story and he told me how the Vikings snubbed him. We decided we were going to go for the Seahawks to win.

I am, by far, no stranger to Super Bowl festivities!!! I had Sean bring our Super Bowl party last evening. I ordered wings for him at B dubs, he also brought a shawarma for my Mom, and pizza for me. That’s the only thing I can eat now besides my “Tack and Gruel.”

I thought the commercials were OK but the game was underwhelming. I told my Mom that it looks like two second strings are playing. I couldn’t believe that this was the Super Bowl?!!!!

I thought the halftime show was all right, but my vision is becoming a thing. I didn’t know that Ricky Martin was in the halftime show until this morning. It took Sean telling me that it was Lady Gaga singing for me to know it was her.

I was expecting to see some good football and I did not. I think it was some time in the third quarter when Sam Darnold missed Cooper Kupp again, I said that Matthew Stafford would have put on better show and he DEFINITELY would have connected with Cooper Kupp!

Matthew Stafford is not retiring this year so maybe if he’s in the playoffs next year, I may watch it but my vision is begin to scare me a little bit… I still can see and hear that doctor the ugly glasses Home I never saw before or after telling me that ‘I have MS, I’m going to go blind, and then I’m going to die.’

My Mom called Urology to ask about my appointment(because that’s a thing now, I will see a urologist twice a year). It’s on the ninth floor. She also called the van rental place and secured the vans for February. Just 2 this month because I have one virtual appointment with an endocrinologist.

It was a nice time yesterday. I finished my pizza today. #ItSucksToSuck!!! #MSsucks!!! 😒😒😒…