Author: Jen Rios

T-30

I was thinking about the fact that next week is ‘go time.’ I’m already thinking about what bills I need to pay and the monthly necessities I need to order once my check is deposited.

I really can’t believe my life is like this now but it is. I more clearly thought about what my vaccine schedules should be. I can’t get my second shingles shot in May because I am getting my Covid shot. I get that every six months. I am more clearly seeing the doctors that I need to see as well. I’m hoping to add the vascular surgeon for June. That’s the doctor to handle the circulatory system.

My Mom asked me the date today and when I told her, I said, “Hey, my birthday is in a month.” She asked me how I feel about that and I didn’t have an answer. I thought about it for a while, and my answer is, “Eh.”

I, historically would love my birthday, and start an countdownuntil the day. Since it is February 12, which is Bobby Garrigan’s birthday, my birthday is in one month. T-30; but, given my current situation and it will be this way until I die. it’s whatever, I think.

About the Super Bowl Commercials…

So, about the Super Bowl commercials. I was excited to be blown away, but I must tell you that I saw this commercial and I figured that might be my favorite one! And it was pretty early on in the game:

But then Christina Applegate gave her PSA… it shocked me to see her looking how she does but MS ain’t no joke!!! I was startled at how angry she is. She said, ‘join me for next steps when it comes to MS’ Or something like that.

That completely unsettled me and I just said to no one in particular, even though Sean was in the room as well. “There are NO next steps when you are diagnosed, You just have to deal with it! And it’s hard!!!”

I am still trying to deal with that! I still haven’t counted the doctors appointments I had last year and I know this year. I’m going to have at least 10.

I am completely startled at how 25 years of MS looks so many doctor appointments! With disease progression comes the necessity or more doctors to work on me…

But then I saw this commercial which made me laugh hysterically!!! Fast forward to today when my Mom was speaking to Sean on the phone and they both were talking about this commercial and they both started to laugh that warmed my heart!!!:

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!!! 😒😒😒…

100%

Well, it’s here.

I guess that I have never really about it.

But, sadly it’s here. My life is 100% MS.

I pillaged today and it is getting so difficult to distribute the pills.

I was thinking about my vaccine schedule and I think that I should get my first shingles shot in March when I see Dr. Chamas. That way, it will be in the Henry ford health system and then I can get my second shot downtown after my neural ophthalmologist appointment.

That will be one day after two months from my first shot. I’m going to ask Savannah in March before my appointment with Dr. Chamas about getting a shingles shot.

Meijer pharmacy already said that I was approved and they have that information in the MICR record of vaccinations in Michigan. I don’t anticipate a problem, but I will go to Meijer if it is.

This is all my mind thinks about now.. I never expected this, but this is how it is now. #ItSucksToSuck!!! #MSsucks!!! 😒😒😒…

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.

#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:

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:

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!!! 😒😒😒…

“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!!! 😒😒😒…

A Prednisone Dog

So, Leia come to us in April 2020. It took a few months, but we found out that she has really bad skin! We tried a lot of things, but it did not work for her at all.

it was decided that she would just become a prednisone dog. The vet told us it would shorten her life, but it is the only thing that helped with the itching.

Well, it’s been a few years and we have decided to take her off prednisone. It was affecting her organs too much.

So, if anyone has any suggestions how to help with her itching, I would love ideas!!! #MyGirlL he’s kind of a mess right now and it’s a little bit scary… please be specific. Pictures would be great.