Author: Jen Rios

FAR FROM IT!!!

I was foolish to think that after 22 years, things would work like clockwork with having MS but that is NOT the case! It’s nothing but red tape! I am beyond frustrated, and I can’t even handle it on my own anymore! Talking on the phone is difficult for me so talking to my medical supply company is not an option for me. My Mom handles that because she is my caregiver.

We were specifically talking about the prescription and that I am going to that specific doctor on Friday to hopefully get that amended. The person we spoke to needs to send emails to other people in charge before my situation is rectified.

My Mom was on the phone for a while this afternoon, and this is NOT EVEN rectified. And this news just days after my chair was denied!!! It’s really a good thing that next week is “Go-Time” because that’s when I see the doctor two days after I get my haircut! Despite the red tape that I am sifting through right now, I feel that I am in a good place for my care but it just stinks that it’s not seamless. FAR FROM IT!!!

Diane to the Rescue!

I guess NOTHING has EVER been easy for me and it seems that things have not changed at all!!!

So let me ‘splain ya:

Yesterday, I received a letter from CMS. I did not recognize that company, and once I opened it and read it, it informed me that my wheelchair has been denied.

WHAT?!!!!

I tried to remain calm and waited for my mom to come back from her walk with Leia. When she came into the house, I just handed her the envelope, and I told her that I found out what CMS was. I told her that I was completely at a loss! something that I thought would be easy, just getting a new PowerChair, but it turns out that there is a whole lot of red tape involved!!!

My Mom took pictures of the letter and told me to email them to Diane. She is the occupational therapist who fit me for my wheelchair renewal in June. She had previously fit me for a custom manual chair in like 2015 and then she fit me for my first PowerChair in 2018.

Diane called my Mom today. My Mom came into the house and had her explain it so I could hear what was going on. Turns out, it’s just a little bump in the road. Diane completely understands what needs to happen and she did not get back to me right away because she was waiting for another person at National Seating and Mobility (NSM) to get back to her.

Brenda is the woman at NSM and she received the denial letter as well She started looking through my medical file and saw that Dr. Chamas had approved everything so Diane just needs to resubmit it as Dr. Chamus as my referring doctor.

In 2018, Dr. Cerghet was my doctor. She still is my doctor. But I am super Involved with Dr. Chamas now because I get a weight and bloodwork every six months with her office.

This letter was super shocking to me, but I love that Dan knows what to do! This is Diane to the rescue!

My Current Existence

I saw this short not too long ago:

When I saw that tour announcement, that really hit me hard I clearly remember when he was going to play at Saint Andrews hall in Detroit. It was the night before my second year teaching started, I would just need to report before the students came, but back then, I took it so seriously, so I did NOT see Gavin!

He released another album while we were living in our second apartment. I remained a huge fan and he got more successful. I didn’t get to see him until Sean and I were living in our house and I went with my cousinT, Shannon:

That was the last concert I attended! I immediately thought of that day when I saw Gavin DeGraw tour announcement. He was the second act and while Maroon 5 was playing, I went to the restroom. It was at DTE energy music theater! The restroom was extremely hot!!! Luckily, I was able to get myself out of the stall by myself, even though my cousinT offered to help!

I posted this short a few days later, and tagged my cousinT in that post:

I clearly remember the conversation we had when we came out of the restroom, and Gavin Degraw started singing!!!:

But that is how my brain thinks now. I’m just living in my memories ! Even though, as the years go by the memories become more distant and a little hazy but I appreciate thinking about that, and prefer that then thanking about my current existence…

It’s Like that Now

I watched the rest of Love and Other Drugs. A new and different scene spoke to me today. Even though it’s not MS, there are similarities. I tried capturing it on my TV by turning it up really loud and recording it but I can’t control my hands that much anymore. It’s like that now.

The scene that spoke to me today was when Jamie spent the night at Maggie’s house and he is leaving and she tries opening the pop tart foil wrapper but she can’t. I really appreciate how Anne Hathaway portrays the loss of hand control!

I have thought of other scenes from this movie as I try to open my Adkins peanut butter cup wrapper. I have one every night before I brush my teeth when I take my pain pill because I will sleep the night without my compression socks. You have to eat ibuprofen with food so….

I really paid attention to that specific scene this time around and I cried because I was by myself because my Mom is getting her hair done. I looked through YouTube to find the specific scene I was looking for but it’s not there. I saw this short and it got me thinking, she was diagnosed at 26. I was diagnosed at 18. Neither situation is fair and this short made me cry because this is my real life:

Love and Other Drugs is on Hulu. It’s also available for free on YouTube with commercials. I don’t own this movie yet.

Flight of the Navigator

I had just finished my dinner when my Mom was taking Leia out for a walk. We had already decided on the movie we were going to watch tonight, but I checked to see if Love and Other Drugs was available and it was. It was on Hulu.

I started the movie just as my Mom was leaving with Leia. She told me that she did not want to watch this movie and we decided on a different one. I told her that I was just going to watch it until she came back. I think I got about 20 minutes in before my Mom got back with Leia. She told me that we could just continue watching Love and Other Drugs.

I thought about it for a moment, and she went into the kitchen to heat up some more of her food. I started telling my Mom about the movie and the more I told about it, the more I realized that she should NOT watch it!


We watched this movie a few nights ago because we found it on Disney+. This movie reminds me of my aunt Rita! I am back at her house, having ‘tea on the veranda’ with her. That’s probably why I dig the Golden Girls because their wicker living room furniture was like the furniture in my aunt’s sunroom, which she called her ‘veranda!’

Watching this movie again took me right back there and I have known so many of these lines for all of my life!!!:

From my Living Room

So, I had my neurology appointment on Friday and she told me that she signed everything that I needed her to and if nothing changes, I won’t see her again until next year.

I know that nothing will change before our appointment next year! I’m sure my symptoms will get worse throughout the year but I will just deal with it. I’ve been dealing with this for WAY TOO LONG!!!

I was thinking about how I used to walk down the hallway at the clinic and Dr. Elias (who is now retired along with his nurse) used to watch me check my gait. I didn’t think much of not walking down the hall anymore and just running my heel down the opposite shin. It wasn’t until I could not do that anymore when I really started to realize that it’s getting serious!

But I guess my life with MS has always been serious. I got pregnant with Sean four months after I was diagnosed and was in college. Once I had him, it was a race to finish my degree and get a job! We got our first apartment August 1, 2005. I was a teacher, and therefore could only afford to see my neurologist once a year because that is a specialist appointment and therefore more expensive! I’m a single mom!

It was at my second to last speech pathology appointment, where Meira suggested that I go virtual for my appointments because it will be easier for me because we won’t need to rent a van.

I can do that for my Neurology appointment because they are not going to give me a cure but I need to see my internist twice a year to get blood work in a weight, so those will NOT be virtual. My optometrist in my neuro ophthalmologist have to see my eyeballs, so those are NOT virtual either.

But I guess this kind of makes me feel 21st-century, because I will see my neurologist annually just virtually from my living room.

Tolerable

I had my virtual appointment with my neurologist yesterday. it was quite uneventful, and even mundane because I have been doing these for 22 years!

At this point, I still can do all of the testing with my arms and if I rub my fingers like I’m snapping by my ears, It sounds the same in both ears. We talked about my vision and I told her that Dr. Harris says that my vision in my left eye at 20/70 is respectable.

She reviewed that I no longer want to do MRIs and I agreed with that. I think I am at a ‘good place’ with this disease, but it’s NOT a ‘good place’ at all, but that’s where I am! 22 years in, I am pretty sure that this disease has stone everything said it can at me and I’m still here tolerable I suppose.

Summer of Tim Bits!

I was watching the second half of the Hallmark movie with Meghan Markle and it and I heard a commercial with this song. I don’t even know what the commercial was about because I wasn’t looking at the TV so I don’t know what they were selling, but I liked hearing this song! It took me way back to our second department and the summer of Tim Bits!:

So Weird!

Today marks the first day that I have NOT worn my compression socks since having my pressure sores. I woke up too late in the day and I need to wake up to early tomorrow for my virtual neurology appointment. feelsI weird! But I must say, I am pretty sure that this will be a one time thing. My legs feel so weird!

August 2023 Faves

I was thinking about when I lived in our first apartment, we were going back to school for my second year teaching And I really have to put Gavin on here, but I can’t stop thinking about Sinead O’Connor so:

I constantly think about the fact that I could have gone to see Gavin Degraw at Saint Andrews Hall in Detroit! That was before he had really made it big and it would’ve been a pretty cool intimate setting! I was too concerned about work the next morning! Retrospectively, I have seen him perform, but that was at DTE, I. should’ve gone to the concert in 2006!!!: