Author: Jen Rios

#MyGirlL: Getting Colder

Last night, I had difficulty transferring in the hallway because my right hip joint gave out and I kind of gasped. But, wouldn’t you know it that #MyGirlL bolted to the doorway of Sean‘s room to offer her help!

This girl is SO sweet and it IS getting colder so, she NEEDS A coat! I ordered one for her yesterday. Sean makes fun of me but I’m so excited for her coat and pictures will come once I receive it!!! I ordered it from doggiediva.com and I am so excited!:

Dysarthria

So, I had my appointment for speech pathology yesterday. It was a good appointment and there are a lot of things I still need to unpack from all the information she gave me! The most striking thing was that she seemed like she was like me when I taught. She had all of her documents in sheet sleeves in a binder. She had them all organized and ready to pull out to use whatever one I needed. She had a list of words for me to read from. She recorded my voice on her phone. I have read the list of the first 30 words before she told me that I could stop. It was like the test I used to give my reading kids in the beginning of the year!

After I read the words, she help me read about 10 sentences and lastly, she had me read a paragraph. One thing I noticed about these tests and I told her was that the words needed to be printed larger because I was having difficulty seeing them. My MS call has greatly affected my eyes recently. After we did those things, she had to leave the room to get A release form for me to sign and she told me she was going to record me just talking with her for about three minutes. I was completely comfortable with that. I like this woman! She reminds me of a friend I had a nice cool. I was comfortable.

Before she left to get the form, she told me to think about something to talk about for about three minutes. I told her about when I told my Mom that I was pregnant. It was a story that I have told for 20 years and I am comfortable telling it. After we were finished speaking, she turned off her recorder and told me that it may not look like she was evaluating me but she was. She told me that there are six levels of dysarthria. She added that she is seeing two of those levels in me. She had explained to me as I read the list of words, the sentences, and the paragraph that she may have to, “Bank my voice.” She explained about the possibility of needing my voice recorded if my disease progresses to where I cannot speak. Even today, that kind of startles me. I have so much more to say about yesterday but I feel like it’s too much for me to write about just yet…

MY, “MS Brain”

Yesterday, I received a text notification about a doctor appointment that was coming up. I had to completely forgotten about it and I was relieved I was there in time. Well, enter MY “MS Brain”: my appointment is tomorrow and I was so frustrated absolutely because it takes so much work take it out of the house!

I have always been really good about being on time for appointments and stuff but it seems going on 21 years in, that my brain is getting muddled! That kind of bothers me. I didn’t think that things and loss of ability could still bother me but they do… 😒😒😒

#NeedSomeMusicInMyLife

I thought of this song as I was falling to sleep last night. I know that I’ve posted this song on my blog before because it’s one of my favorites. Here it is again because #NeedSomeMusicInMyLife. I drifted off to sleep singing this song in my head and thinking of simpler times when I was still driving and walking.

The, “MS Brain”

I got a text reminder this afternoon for a Speech physiology appointment for tomorrow at 3 o’clock. I had completely forgotten about it. I made the follow up appointment back in August when I had my swallow test. I I think it is crazy that I had completely forgotten about it!

I am extremely grateful for text reminders because whenever I go to a doctor’s appointment, a van needs to be rented for me to accommodate my wheelchair. So, tomorrow morning, my Mom is going to call there to see if there is a van available to rent for tomorrow.

I think it’s a little strange that 20 years in, I am seriously having the, “MS brain” that so many members of my MS support groups talk about. I don’t think I’d like this but let’s hope my Mom can get a van tomorrow!

MyGirlL: My, “Pink Ladies”

Yesterday was my Mom’s birthday and she was so thankful for all of the birthday wishes from the two posts that my brothers put on Facebook! I really liked that her birthday present from me arrived on her birthday! It’s only now that I really realize that I took over her birthday by having Sean on November 2nd. Her birthday is the 5th.

I was not able to get an actual birthdate for Leia, and her vet marked it as October 26th. So, it seems that ALL of the important birthdays in my occur at the end of October early November. I took some pictures of her yesterday showing off her new sweatshirt and Leia’s sweater too! My girls’ colors are, “Pink and pink!”:

Doctor #21: My Impressions

Okay, I’ve written before about how I am very familiar with the downtown campus of the Henry Ford Hospital. Both my Mom and I are. I think she’s a little more familiar though! Neither one of us had EVER been to this part of the hospital. It was a culture shock! It was on the 12th floor and the hallways were extremely skinny! That’s not difficult if you are one person walking through the clinic. But I am kind of a lot in my motorized chair with my legs extended.

I made it through all right though. They had me go directly to the x-ray room. I’ve never had x-rays on my feet like this before! Toni, was excellent though! She held my feet as the pictures were taken because it was obvious that I can no longer control my feet. All of this was immediately intimidating because the hallway was so skinny and I cannot control my feet at all! I was ashamed at how pronated they were and it made me sad!

Once I was taken back into a room, we talked with the in-take nurse and I noticed this poster on the wall which is an extremely sad commentary on our part!:

A female doctor came in and asked what was going on with me. She was pleasant with me and had me take my compression socks off (my Mom did that!). That was so strange! Although I was barefoot during my appointment, my feet did not turn purple but they did not feel comfortable either!

Dr. King was extremely young! So was his counterpart! She had her name tag on but I could not read it very well but I saw that her first name was Chrystina with a Y?! I have never seen that before but I liked her because she also graduated from Michigan!

Dr. King has known many people with MS and he said that it is strange how it varies so much! He stated a man that he knew was diagnosed when he (Dr.King) was four years old and the man stopped working when Dr. King was about 35. So, he looks a lot younger than he is! I told him that I thought it would be like that with me but it’s not!

Well, one thing that I really liked about him was that he explained to me what he normally does with Botox and Orthotics and stuff but I explained to him that I’ve only been down that path a while ago. He then, paused and looked at me. He recommended a therapy and rehab place in Grand Rapids:

Grand Rapids is more than just a hop, skip, and then jump from me and as we spoke, he kind of understood that this is where I am. I have explained how if certain therapies were available 15 years ago then I might try them out but I got the impression that he understood that I’ve had MS for a very long time! He didn’t say it to me but he kind of understood that this is how it’s going to be for the rest of my life without saying it to me. I think that I really appreciated that!

Because we were in downtown Detroit, my Mom stopped off at the Tamaleria and I had a fresh and warm tamale! Or, better yet 2 1/2 fresh and warm tamales! They were DELICIOUS!!!