Author: Jen Rios

I was quiet yesterday and I fell asleep many times in my wheelchair yesterday. I thought I would a pivotal post that would give me hope for the future but, I woke up in the middle of last night with my knee hurting. It felt strange and I couldn’t figure it out.   That is, until I rolled over  onto my stomach and I felt and heard a crack of it popping back into place amidst the dark and silence.

Needless to say, when I awoke for the day, my knee was hurting quite badly…STILL!   When my knee was first injured, I used to say things that would start off with the words, “When  my knee is better…”  and I’d finish the phrase with things like, “I’ll  go back to Barwis.”  (that phrase being the most important!)

But the thing is, it’s been over two years since that day of my knee being injured and I can’t see it getting any better. It just s so much! It kind of makes me feel helpless because my day starts and ends with excruciating pain in my right knee. It’s gone on for two years!

I wanted to write something yesterday but, I just couldn’t. With my knee popping out in the early hours of this morning while my bedroom was still dark the pain continues today.   That phrase, “When  my knee is better…” seems like it will never happen. I see Dr. Moore again on Tuesday.

I’ve talked with people who have told me that meniscus repair surgery should make it all better. Then I add, “But, sprinkle in a little MS…”  they respond with, “Oh!”

 After two weeks, my speech has finally returned. I cannot say how terrified I was to not be able to speak that time. I could form the thoughts in my head but I could not get them to come out of my mouth audibly.  Because I am alone for a large part of the day, it felt as if my tongue was swelling inside my mouth for many of those days. I am so beyond grateful to be able to speak again.

 For those two weeks, I  often word think about  and wonder if this was how it was going to be with my speech. I thought of the book and movie, The Fault in the Stars where Hazel talks about Gus’s “Last good day.”  He did not know it would be the last good day before he died. I am not dying immediately but I can’t remember my, “Lst good day” of walking without crutches, not being a wheelchair, driving, and the list goes on and on.

It was sobering to think about my speech not being normal again. It was scary. I  could not remember the last thing I talked about. My speech is slurred sometimes, but I can get my thoughts out  almost as  quickly as I think then. My thoughts get mixed up sometimes but I’ve figured out that if I remain silent for a moment and shake my head, at this point,  they come back.

I don’t know when my, “Last good day”  will be and that’s a little bit scary. But for now, I continue living with my, “slightly modified” way of doing things;  but they STILL get done. Oh yeah, and…  with my speech still slightly slurred, my knee popped out again and the next day it over-extended backward upon transferring. It was a completely new pain that I have not felt in the past two years that I have been feeling pain.  I made another appointment with Dr. Moore coming up to see what’s going on.  Needless to say, that was another, “Bad Day”  like before.  It had a soundtrack as well.

I saw this commercial twice when I was watching football yesterday:

I wasn’t really watching the TV when it came on but both times when the woman said, “Play ‘She’s a Rainbow,’”  I thought of one of my favorite songs and NOT the Rolling Stones!:

This song came out during my first years of teaching when I still attended comedy shows and bars and the line about a beauty going out with idiots seemed fitting to me. Now, because that all seems like a lifetime ago, the line that I really like now is that, “it’s not a hill it’s a mountain when you start to climb.”

I am on a 17 year, “climb” with MS  with no end in sight and right now, it doesn’t seem like a hill, it’s more of a mountain and the summit is not visible at all!

But I dig anything that reminds me of my ultimate, favorite band, u2!

 

Sense and Sensibility is my ultimate, favorite movie! It came out in 1995 but I didn’t see it until high school. I’ve been told that it’s my, “Depression Movie” and that I watch it when I’m depressed.   I’m not sure about that but I have seen it hundreds of times since high school. I loved the romance between Edward and Elinor when I was younger but now that I am older I ABSOLUTELY love Colonel Brandon and Marianne! He ABSOLUTELY loves her guts!“

When he first meets her:

My favorite scene at the end when he looks at her, and it is COMPLETELY obvious that he “loves her guts”!!!:

I love this next scene because she is beginning to love him too!;

I’ve watched it twice in the past two days. Maybe it is my, “Drpression Movie”! What do I have to be depressed about?!  I’m  pretty much homebound and can’t even talk!!!  Also, my knee still hurts!

Having had MS for 17 years, my life has been greatly affected by this disease! What has happened recently, is that my speech has been affected for the past eight days. I noticed I was having difficulty talking last Monday night after my friend, Ami, left after coming over to see me  because I am basically homebound.  In the past two months since getting my  motorized wheelchair, I have been out of my house a total of three times. Once to get my haircut, another time for an eye appointment, and lastly to accompany my son to pick out his Homecoming attire.

Each time I have left the house, I have to use my manual chair because I don’t have a vehicle to accommodate my motorized chair. My knee hurts every single time! My knee hasn’t stopped hurting for almost the past two years! But, the most  frustrating  thing affecting my life is my speech.

There have been times when my thoughts get muddled and my words get confused. I often times will point to something and say, “that” because I cannot think of the word I am looking for.   When I can’t think of the word, I often will shake my head in an attempt to get my thoughts in order.  It never works! MS is a neurological disease and that has been just something I have had to deal with periodically!

For the past eight days,  however, this time, my thoughts are clear. I can think clearly but getting those thoughts to come out of my mouth is very difficult! Almost impossible! For the past eight days, during my most recent relapse, my symptoms have  also affected my face and my mouth.

If feels like someone is pulling my eyes downward and my lower eyelids are drooping. My face feels very heavy and almost like I am wearing a heavy mask. My tongue has felt extremely swollen even though it is not. (I constantly will stick my tongue out at Sean and ask him if it’s fat!)  During the day, my Mom will push my cheeks up when my face feels extremely heavy.

It’s most frustrating that my thoughts are clear and I can’t make them come out of my mouth. It sounds as if I am drunk and words are just garbled up.   To try to avoid the jumble, I speak very slowly and sometimes I have to yell to get the words to come out. It is my extreme hope that this is temporary because if this is permanent, that is really scary!

This particular blog post has taken me  A long time to, “write”  because I have to dictate anything I “write” because I no longer have dexterity in my fingers to type into my phone.

When this first happened, last week, Sean told me that, “[my] voice makes [him] sad!”  I agreed with him and told him that it freaks me out. He told me that it freaks him out too!