Author: Jen Rios

 As I slept, I rolled over in bed this morning and my knee popped out at 5:56. Sean was still asleep and I tried rolling back-and-forth to get it to pop back in by itself. That didn’t work! Once Sean got out of bed and out of the shower, I asked if he could pop my knee back in.  He tried but was unable to. He had just awakened  and needed to get ready for school so I figured that I would just deal with it until my Mom came over this morning. 

When it sounded like he was just about ready for school, I asked him to try one more time to pop my knee back in. At this point, because it hurt so badly, I had uncovered myself  (after a lot of effort) and laid on my stomach with my right leg bent cockeyed behind me.  Sean came into my room and laughed and asked what kind of position that leg was in. I told him that it was popped out  and couldn’t lay flat so it hurt a whole lot! 

On his second attempt, he was able to pop it back in but before I got the relief of it being back in its socket, I had to deal with the burning pain that accompanies it just before being popped out.  I am still laying in bed trying to get back some of that hour that I was not able to sleep because of my knee hurts so badly! Sean was able to pop my knee back in at about 6:58 this morning.

 I will call Dr. Moore’s office this morning once I am out of bed. I am not sure what he can do or even if he can’t do anything but I have to try! This is definitely NOT a good way to start your day! And I know because lately, my days have been starting like this more often. So there’s that…

I’ve been thinking about my time working at Superstars in Fairlane mall when I was in high school. I’ve been thinking about how excited I was to see the REAL Santa as I walked around with Don.  That might’ve been the day that we stopped and had lunch at a Coney Island together.

I thought about that lunch at Coney Island today when Sean came home from the second day of taking his finals.   He got home a few minutes before 11. Once my Mom and I were finished with our morning routine (we got a late start today),  Sean asked me if I wanted him to make me some lunch. I nodded and he asked what I would like to eat. 

 My answer is what made me think of that lunch at Coney Island. I wanted grilled cheese.    I knew that I wanted something warm to eat and I also knew that we did not have a lot of groceries at my house! So, grilled cheese it was! 

That lunch I had with Don, I also ordered grilled cheese.   Sean made the grill cheese and I told him to cut it into nine pieces. When I was in high school, I had a meeting with Mr. Flint during lunch and he ate his sandwich. As we talked, I had to interject that he took really big bites of his sandwich! He laughed and told me that it takes nine bite to eat a peanut butter and jelly sandwich. I’m not sure why I told Sean to cut it into nine pieces because I think Mr. Flint was wrong! It takes MORE than nine bites to eat!

 Sean made a really good looking grilled cheese sandwich! I only pretty recently told him about my lunch with Don at Fairlane.   It was during that lunch that I ate my grilled cheese sandwich that I ordered with a knife and fork. Don had almost a mobster way of talking and it was toward the end of our lunch that he told me, “Now Jen,  i’ve seen some crazy sh*t in my life…”  to which I looked at him intently and waited for the next thing he was going to say, “But, I have NEVER seen anybody eat a grilled cheese sandwich with a fork and a knife!”

I was 16 when Don saw me eat that grilled cheese sandwich with a fork and knife; and now, 20 years later, I STILL eat my grilled cheese with a fork and knife!    I am not sure that it is just an MS thing; I’ve never liked my fingers feeling greasy after eating a grilled cheese sandwich so that is why I eat it with a fork and knife.  But, every time I do which isn’t very often I think of Don saying that  in that Coney Island and I smile!

This song randomly showed up in my YouTube feed and I had to share it! I shared it both on Facebook and Twitter. I tagged my two oldest brothers on Facebook with this post and received comments from numerous people on both social media sites!

This song brings back memories of the green carpet in the living room at my parents’ house and the front door being opened while this song/video played on the TV because we did not have central air back when I was young.

 Even though it is the middle of December and I only listen to Christmas music, I have listened to this song and have played it probably close to seven or eight times thus far since posting it yesterday. It’s so good! 

I’ve said before that some days I have to watch BOTH broadcasts of Good Morning Football for the simple reason that I cannot fully appreciate things that are said because I am too out of it during the first broadcast.  I ABSOLUTELY love that show and need to fully appreciate it so I watch it twice.

I watch it just about every day and if I am with it enough during the live broadcast, I will tweet at them all the time! It really makes me feel good when any of them like or respond to my tweets!

This morning was a rough morning but Nate Burleson said something that I absolutely loved  when he was talking about Philip Rivers and the upcoming game between the Chargers and the Chiefs that I had to tweet at him! AND he liked it!  SCORE!!!

I may have misquoted him because like I said, it was a rough morning!  It may be *will help  instead of *helps but either way, it is DEFINITELY a gem! I think back to all that I’ve been through with this horrible disease and it will help me to “get through”  everything that is yet to come of course!

I have always been an overly sentimental person! Last week, my Mom and I talked about setting up our Christmas trees. CORRECTION:  we talked about my Mom setting up our Christmas trees! Remember, I just have a supervisory role when she puts mine up now!

As she was putting the ornaments on my tree, I was recounting the stories of each one of them.   We even started talking about all of the ornaments on her tree and the memories I have regarding them! There is this purple gingerbread house cookie that looks like it would taste so good and my brothers and I used to bite it!  It NEVER tasted good!

I also started to tell her about the tamale girls we used to have. Two girls who were made from corn husks so they looked like they were tamales. I told her that I used to take them off the tree and play with them all the time! Sometimes, a G.I. Joe would talk with them too because he was their same size!

My Mom has always had the tamale girls for as long as I can remember. I remember that one of them (the taller one) got lost when I was in high school.   As she was decorating my tree, I asked her if she still had the one and she did!

Saturday, my Mom brought this over to my house (on the right):

She brought it over and put it right on the front of my tree next to my favorite ornament of Sean and his preschool school picture! I was shocked! She told me that since I had so many memories of them that I should have it on my tree! I screamed in delight and was so excited!

She told me that it was originally on my Abuela’s tree!   Talk about sentimental!   Completely warms my heart!  I have visions of my granddaughter having it on her tree one day as well!

I recently saw this picture  from one of my MS support groups on social media and I’ve really thought about it since then:

It made me think of an observation Dr. Cerghet had.  People have often commented on my smile. I remember a professor commenting on it when I was an undergrad. My response to this was to say, kind of dismissively that, “My Dad paid A LOT of money for it!”   That prof listened thoughtfully to me saying this and he looked at me and said, “No,  I think it’s more than that.”

I’m so uncomfortable with that compliment that I would tell people at work that,  “Smiling is my defense mechanism.   When I am uncomfortable, I smile.”   I am most grateful that my teeth are mostly straight having had braces in middle school. I knew that I had to work hard to bestow that gift to my son as well! He had orthodontic work longer than I did and he had two different surgeries before and  while he had them.   I love his smile too!  His Mom paid a lot of money for it!

I was a little bit nervous for my neurology appointment that I had almost a month ago. I was nervous because I’m still trying to get comfortable with my new neurologist after Dr. Elias retired. He had been my neurologist for the past 16 years. He was super tall, had a warm smile, and a warm handshake with his huge hands!

I first saw Dr. Cerghet  last May but her intern performed all of the  parts of the physical exam. I met with her very briefly after the examination was finished.

This time, however, she did not have an intern. She performed the physical examination herself and she talked with me and my Mom about how things have been progressing with my MS.   During this talk and the examination, I smiled. It was partly because I was a little bit nervous because I haven’t had a new neurologist in 16 years but also because my Mom and I work  together SO closely dealing with the progression of my disease now that she stopped working to be my full-time caregiver.   I talk with her (my Mom) so much about the progression of my disease and we deal with it together accordingly.

I told Dr. Cerghet that I was comfortable with my handling of the disease thus far. She placed her hand (which is a lot smaller than Dr. Elias) lightly on my knee (my good one) and looked at me with compassionate eyes and smiled.   She told me that she agrees that we are handling my disease well, “Because [I]  i’m smiling.”   She said that a few times during my exam and the examination was only slightly a little more difficult than it has been since I used to walk down the hall 17 years ago. I don’t walk down the hall any longer but I still complete the same tasks of touching my nose and then touching her fingertip that is in front of me among other tasks.

From the moment I left her office almost a month ago, to seeing this picture on one of my MS support groups, to writing this blog post, I thought it strange that she commented on me smiling. It brought back all of the comments I have received regarding my smile and reading that picture that was posted, that is something to comment on! I am still smiling with my Mom’s help!

There really is NOT much to smile about when you have MS but I still manage to do so with my Mom’s help and care!  Seeing that Dr. Cerghet sees so many people with MS, the fact that I am still smiling is something that is rare given how far my disease has progressed!

I still KNOW that my Dad paid a lot of money for my smile but  I also think that it could be something more…