Category: A Bit Of Randomness

I’ve been watching a lot of free on-demand movies. When Xfinity changed over the boxes  awhile ago, I see pictures of the movie Options. It works out for me when my eyes are tired and I can’t See well enough to read the titles.The movies change all the time and I end up scrolling Pretty far down  to discover some old school gems.

I recently discovered this old school gem a couple of days ago and I immediately stopped scrolling down to look for movie options and started the movie! I’ve already watched it three times! I still know all the words!   Because Sean is in school now, I can sing at the top of my lungs during the day!

Perhaps I need to add a little bit of a backstory. I was 13 when this movie came out. I was at home sick with chickenpox (200  on my face! I counted.) the same time my Dad was recovering from a recent hospital stay. My days consisted of waking up to watch game shows and then watching Pocahontas. We had an automatic rewinder so the movie would rewind and the VCR would spit it out. I was cross stitching then to keep my mind off of the edge and when the movie would come out, I would push it back in. I would watch the movie three times a day.  It drove my Dad nuts!  I no longer have to wait for the movie to be on Disney Jr.,  instead  I can watch it anytime!  Score!!!

Tuesday, I had an eye appointment. I’ve been wearing glasses since I was in second grade so this is a norm for me.  I’ve had Optic Neuritis in my right eye for 16 years and in my left eye for probably about 10. Getting my eyes checked out is an annual thing because I have to order new contacts.

The good news about going to the eye doctor was that I learned that my eyes are less pressured (probably cause I’m not working –  so I guess teaching middle school is a little bit stressful!).  My vision stayed the same and the doctor decided to keep my prescription the same in both of my eyes even though my right eye is my, “Bad eye.”

The bad news is that my eyes were originally getting checked out by the tech, My right eye has gotten a lot worse!   When I was asked to cover my left eye, I couldn’t really see much! He had to make it so big that there were only two letters on the line so I could see it but with my right eye there was a big white blob in the middle of the letters so I really couldn’t see what letter it was.

In this moment, I realize how much I adapt by moving my head  to the left to try to see better and shutting my right eye. If my left eye was covered, I can’t shut my right eye,  then I can’t see! … Well, I can’t see that good out of my right eye anyway!

I went into the exam room first to do the vision testing and to take my contacts out. After we were finished with that, I had to go get that air puff in your eyes thingp and the other machine with the picture of the  blurry  Hot air balloon.  As a wheeled myself out of the exam room, I noticed that my knee especially hurt and my even my left leg hurt. I had to be in my manual chair because I do not have a vehicle that accommodates my motorized chair. It was in this moment that I truly understood  how important it is for me to be in the motorized chair. This realization was hard for me!

My Mom had given me a pair of my Dad’s glasses and I was going to have my prescription put into the lenses so I could wear them and feel closer to my Dad.   When the doctor came in, my eyes were  already dilated and it was a more extensive exam with me looking at the letter chart. The doctor would ask me to read the line and I would remain quiet for a while as I tried to decipher what letter I was looking at.  I thought of Sean and started to laugh!

When Sean was small, my Mom watched him when I was at work and he would go with my Mom and Dad to my Dad’s eye appointments. Sean would sit in the exam room with my Mom as my Dad was getting his eyes checked. During the time my Dad was reading letters off the chart, it was obvious that my Dad was having a really hard time because his vision was really starting to fail. So since he hesitated before saying the letter, Sean whispered the letter to him. My mom, my dad, and the doctor all laughed.

I recently have asked Sean about that and he remembers it. He said, “What  could I do?! My friend was having trouble! I had to help him out!”   He wasn’t there with us on Tuesday so I had to figure it out by myself. They were long moments of silence but the doctor understood. She was really great!

During the exam, my knee was hurting so badly! I told her that I was going to buy contacts and asked about getting my script into my dad‘s glasses. She thought that could happen and sent me out to the lobby to order everything. Well,  it was possible to get my script in my Dad’s glasses but after I had to pay for my contacts because I rarely wear glasses, it was way too expensive so I just opted to get the contacts.

My Mom drove me to my house with my eyes still dilated. It took a long time for them to get normal, actually it was the next morning before I could see up close again. So with my appointment, there was some good and some bad. Good that my eyes are under less pressure but bad that my knee hurt a whole lot!, I realized that the motorized chair is necessary, I couldn’t afford to get  my script in my Dad’s glasses…

So overall, some good and some bad, but mostly bad!

First of all, my cousinT Shannon is the BEST person to go on a road trip with!  I went on a road trip to Shippensburg, Pennsylvania with her when I was in high school.  She made the BEST mix for the car ride!  There is one song that I always think of her whenever I hear it because it was on the  Shippensburg mix!

I’ve been thinking of this song because I’ve realized that still being in constant pain almost two years after surgery, I’ve had to make some changes.  My knee is not recovering well being seated in a manual chair all the time. The only time I get reprieve is when I am seated in my motorized chair.

The chair can be adjusted to take pressure off of my knee and that helps with the pain I feel.

  

Christie at Binson’s told me that I am lucky that I still have my manual chair in addition to my motorized chair. To have two kinds of chairs is unheard of.   Because I do not have a vehicle to accommodate my motorized chair, I use my manual chair when I leave the house. However, since it is summertime, I have only left my house twice since I’ve gotten my motorized chair. Once, to get my haircut and my eyebrows waxed (because having two eyebrows as a 36-year-old woman is IMPERATIVE!) And I get the two things done at the same time. And, the second time I left my house was to get my eyes checked because I needed to order new contacts for the year.

It was during this appointment that I realized that it hurts WAY TOO much to NOT be in my motorized chair!;  So therefore, I am homebound. The gravity of that statement is hard for me to accept but as I say it out loud, I think of that Shippensburg mix!

It warms my heart to think about belting songs out at the top of my lungs with my cousinT.   In this case, being homebound is not like this fun song and great memories but something quite depressing!

I spoke to Advantage mobility  yesterday because they are the ones who modified my current vehicle, a 2012 Malibu that’s paid for. I asked about a handicapped accessible Silverado that I saw on Facebook.  (Thanks Ami!).  Sharon gave me all the information for the place that converts these vehicles. I called Zack and spoke to him today.

It’s a pretty long process to get measured in my chair, see the kind of vehicles that will accommodate a chair, find the vehicle, and get it modified.   He let me know that is at least a five or six month process. Not to mention the price!!!   I have a vehicle that’s paid for but it does not accommodate my motorized chair which is my new reality.    So, for now, I am homebound!

The reality of that statement makes me sad but at least every time I think of it, I think of my cousinT Shannon!

I chose that Simon & Garfunkel video because it was from a live concert and that always makes me think of seeing Train in concert with her!

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!

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!

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!

 

 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 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!”