Author: Jen Rios

I just read an article that said that Irene Cara died! That kind of shocked me! This song was my jam and I school! I watched the video again just now and I cried and I wish I could still sing it!!!

I think I figured out a workaround at about 3 o’clock this morning. This workaround makes me nervous so I guess I found a nervous workaround this morning! Here is the deal:

I have that good smelling fellow who was working with Dr. skarf to think for this because he looked in my file and enumerated all of my current doctors. I have seen many specialists for specific reasons but they are not my doctor all the time.

He went through my chart to gather that information. I have been seeing them lately. That’s when the workaround came about!

I was completely caught off guard because the message I received from my neurologist nurse suggested that I see a doctor whom I have seen before and I know what they are going to do and I’m not going through that again! I know what all of that is about and no thank you!

What I am going to do, is make two phone calls on Monday. The first phone call is to my medical supplier and I will tell them of my new doctor to approve my supplies. Then, I will message my PCPs office to tell her about it. I have already seen her twice and each of those times, my mom has been with me and she marvels at how much of a handle we have on my disease.

Upon waking up today, I received a message from my neurologist’s nurse. I thought about it and before I even got out of bed, I watched this video three times:

https://www.facebook.com/reel/1242307939895400?fs=e&s=TIeQ9V

I told my Mom once that I must have seen at least 30 different doctors in the 21+ years that I have had MS. I have learned a thing or two in the past 21+ years. I have spent that entire time in the same hospital system and I KNOW that they have my records!

My Mom was the one who actually calmed me down. This is all a misunderstanding! I now know which doctor I need to speak to you to get them to approve my medical supplies that I have been using for 21 years. Both of my neurologist and his nurse have since retired but they were the ones who handled everything before.

Things are different now and I will have to let them know that I am an MS O.G. (original gangster).

I just put my Vanilla Maple Chapstick on for the last time this year. It is officially the day after Thanksgiving so my fall flavors are done with and now it is officially the changing of the guard because I’m moving into winter. There completely is method to my madness!!!: 😂😂😂

FALL:

Vanilla Maple is the one in the center.

WINTER:

I am excited to wear my Ginger Spice chapstick when I wake up. That coupled with Christmas music is just excellent!

I started compiling this post on the Monday before Thanksgiving. I was thinking about it and I am comfortable with my top 20 all-time favorite Christmas songs but for this one, I want to add a little bit of background:

I had my Mom snap this picture when we went to see St. Alphonsus just before it was set to be torn down:

This picture was important to me because that is the exact place where I made a very important decision!!!:

I had to crop the picture a little bit so the focal point came into view:

I imagine that we were running late for church because that is the ONLY reason we would have parked there but that is where our green station wagon was parked and I looked at that one-way sign as I climbed into the backseat of the car and heard what I had decided in that moment was my favorite Christmas song:

I have no problem telling everyone that that is my favorite Christmas song!!!

And now for the rest of the hits:

José Feliciano “Feliz Navidad”

That song is driving to my Abuela’s house in Southwest Detroit and stopping to get tamales at Nuevo León Tamalería.

GaylaPeevey “I Want a Hippopotamus for Christmas”

I just love that song and I have the musical Christmas ornament to prove it!

Judy Garland “Have Yourself a Merry Little Christmas”

That probably was my favorite movie growing up when I was, like, six. How I used to love singing along with it and I absolutely loved Esther‘s red dress!!!

Karen Carpenter “Merry Christmas, Darling”

This song reminds my Mom telling me about the Christmas my Parents spent apart when my Dad was in Vietnam. I love her voice!!!

Mariah Carey “All I Want for Christmas is You”

This song is driving to my grandparents house (my Dad’s parents) also located in southwest Detroit. That is where my Parents met and grew up together. So I have even liked this song before I saw Love Actually!

Alabama “The Christmas Shoes”

I was actually in college and working and dfcu financial when I first heard this song when I was shopping for an outfit to wear to their holiday party. It always makes me cry!!!

Train “ shake up Christmas”

this song was instantly one of my favorites when it came out!!! We was already living in our house.

Bon Jovi “Please Come Home for Christmas”

There is just something about Jon Bon Jovi‘s voice!!!

Jon Secada “O Holy Night”

It was by accident that I found this version of this song but I absolutely love it! I can hear my cousin, Sal, singing it at the piano with his sister and his friend the year we spent Christmas in Texas.

Sarah McLachlan ”River”

This song will always remind me of Parker and my time working with him as my MRT therapist because this song was it on his holiday mix on his iPod.

u2 “Baby Please Come Home”

Bono’s voice makes everything better!!! 😍😍😍

CeeLo Green “Mary did You Know?”

I remember when I first heard this

Kelly Clarkson “Underneath the Tree”

Whenever I hear this song, it makes me feel good!

Band Aid “Do They Know its Christmas?”

and sometimes a stinky Link accidentally shows up…

Barenaked ladies “God Rest Ye Merry Gentlemen”

Even though this song cut out in this recording, I love it!!!

Andy Williams “It’s the Most Wonderful Time of the Year”

This song reminds me of watching Allen.

James Taylor “Have Yourself a Merry Little Christmas”

I am excited to watch The holiday this Christmas! This song reminds me of that movie!

Bing Crosby & David Bowie “The Little Drummer Boy”

I really have come to appreciate their voices in this song more! But I still remember singing ‘the Little drummer boy‘ at my school Christmas play. My brother, Dave, remembers too!

Bruce Springsteen ”Santa cause is coming to town”

I think this one has become one of my favorites through osmosis because it always reminds me of my cousinT, Shannon! She loves this Christmas song and I love Wham! We had that conversation when we were in high school and it’s still the same even though we are both in our 40s!!!

So, Leia needed some variety and my Mom got this one for her. It’s in her color!!!

And another picture because she’s so cute!:

I had a virtual appointment with my nutritionist this afternoon. My Mom asked me how that went and I told her, ”Tiring.”

Having to see a nutritionist is tiring. It all is tiring! She complemented my speech today and I thanked her for that because I am working at it! So, here is the deal. I can no longer chew food. I meet with a nutritionist to give me tips on what I can eat and she wants to monitor my weight as well because I am losing it kind of rapidly I think.

I never would have thought that I would lose weight without trying! That’s what’s happening! I am not comfortable with it at all but I have told my Mom and I told Sarah today that, “Eating is no longer easy or enjoyable.”

Sarah sent me additional recipes for rolled oats so I have more variety in my diet but I really don’t care about variety. This is all so tiring!!!

Well, I think I am recovered enough to recount my last out of the house event. I went to the neuro ophthalmologist. I had seen him three times before and Thursday was my fourth. She has lots of pictures of my eyes from different machines so he wants me to come in in the new year to get new scans done.

I have heard his name from the beginning days of my diagnosis. I have seen him downtown in the main hospital. He knows his stuff! On Thursday, he had a fellow working with him. I didn’t catch his name but I was comfortable with him because I am very familiar with Arabic accents having grown up and Dearborn my entire life.

He sat down in front of me to look at my eyes. With that machine that I am very familiar with using. As he told me to look over his left shoulder, I realized how good he smelled! I couldn’t name the scent but it was pleasing!

He left and as we waited for Dr. Skarf and him to come back into the room, I told my Mom that he smelled really good! Once Dr. skarf’s came in, he pulled up my chart and I was able to see over his shoulder my eyeball. I’m not sure if it was the right or the left but there was pea sized dot in the middle of my eye.

I am not looking forward to the new scans that he will order because I remember getting scans done before and my left eye had a gray shadow in terms of what I am able to see. I remember being alarmed at that but he told me then that there are some people who have complete parts of their eye black because they cannot see.

I wonder what my scans will look like 21 years into this disease. I already have a few doctors appointments scheduled for the new year. I think I will schedule him in February or March.

It seems to be taking at least the entire weekend to come back from leaving the house and that concerns me a little bit when I think about it…