Month: August 2018

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!

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!

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!!!

Having had MS for  almost 18 years, There are MANY things that I miss!   I don’t want to talk about the obvious things like walking and driving but rather, focus on things that people don’t realize I can no longer do.

I miss writing.

Sean started school yesterday and I had to sign the syllabi from each teacher for his classes.   My signature does NOT look like it used to!

I am saved by ‘dictation to text’ capabilities in my phone so I can still “write” blog posts.   But, it’s the physical act of writing that I can no longer do. I cannot hold a pen.

My Mother or my son will sign for me when I use my credit or debit card in public.   They write the checks out for me and I just sign my name by repeating my name  to myself a number of times before I begin writing it.

I didn’t have a problem taking notes in college or even writing when I taught. I think it’s sad that if I hadn’t injured my knee, I would still be writing more easily than I did last night to sign my name seven times. It didn’t look very good at all but anyone can tell my signature by the unique way I write my, “J’s”

I used to love my writing! In high school, I started writing, “Obscenely large” (that’s how I explained it people).  Retrospectively, it’s probably because I was losing control of my fine motor skills  even back then. I wrote even bigger when I graded papers!

My Mom will forget that I can’t control my hands well by telling me to write myself notes. Yeah, not so much! She tells me that my hands look functional but alas, I have learned that looks can be deceiving when your body has MS and nobody can tell!

My knee popped out last night as I was getting ready for bed.   It was a stunning realization to recognize that the pain of my injury still lingers, very close to two years later!  It was a huge bummer for me because it came just after a bunch of my friends and former colleagues came over to see me and to hang out. I had such a great night to end with my Mon (who came by just after they left and  to help me get into bed) having to manipulate my ankle until my knee popped back into place. It hurts so badly!

Once I was in bed, I laid on my back as my left knee throbbed . I wondered how I was going to get to sleep. I rolled over to my left so that I was on my stomach as my knee still throbbed.   As much as  I miss Barwis so much that it hurts and I feel that many of my  physical gains that I got there are leaving me, as I laid there on my stomach, I realized that I still had  this thing! Michael used to challenge me to lay on my stomach for 10 minutes before I fell asleep.

I used to be a stomach sleeper before I got pregnant. Being pregnant, you can’t sleep on your stomach so I became a back sleeper. As Sean got older, I still slept on my back because I was losing control over the muscles in my body so I laid flat on my back and would not move throughout the night, if my arms were crossed over my chest, I would have been a vampire!

With all the stretching that Jesse, Adam, Nick,  Mike, and Michael did, my muscles were loosening up and all the strengthening they helped me with, I was able to control my muscles a little bit more.   Because I sit in a chair all day, Michael would tell me to stretch out my adductors (or was it aBductors?)  Adam used to tell me the difference all the time but I can’t quite remember it now.

But being seated in wheelchair these muscles are constricted because I’m sitting so laying on my stomach would stretch them out. It was really painful  at first and took a lot of time to build up to me being comfortable laying on my stomach again. Well, I still am in a chair all day but I can lay on my stomach throughout the night.  In fact, now, I sleep on my stomach for most,  if not all, of the night.

As I was trying to drift off to sleep with my eyes closed and my knee still throbbing, I thought about all my trainers at Barwis and Michael challenging me to lay on my stomach and how long it took for me to get comfortable  to sleep on my stomach for the whole night again.   I was a bit sad knowing that a lot of it is lost but not all of it. I really can’t wait to get back to Barwis but I also can’t imagine my knee NOT hurting; so until then, I will have the fondest memories of working with all of my trainers at Barwis!

I’m slowly figuring out which position is most comfortable for me In my new chair. What works out for me is that my feet are like this, my knee hurts a little less.

From the second I wake up and get into my chair, I  adjust my feet to look like this.

The above pictures I took in the morning when I got into my chair. Over time, because I have NOT been to Barwis and have not had Adam, Nick, or Michael stretch my ankles, my feet end up looking like this:

My feet to get inverted and I have a supinated foot over time.

I am 100% certain that this is happening because I have NOT been to Barwis Methods in just about two years. I never understood why Nick or Michael did this but now I do! It was to  combat my feet doing this.

It makes me sad that both my feet do this, my right or “poop foot” does it just a bit more!

I never thought I would be grateful to have a motorized chair but I am! I can adjust the height of my feet to accommodate my leg spasms and knee pain. I still experience knee pain by the way! I don’t sleep for the night in my chair so when I am in my bed, my knee hurts, it popped out a few nights ago and hurt extraordinarily the next day!

It frustrates me so much that my feet are doing this and I am saddened by all the strength I have lost not being at Barwis.   Alas, my knee still hurts so I can’t imagine anyone manipulating  my right leg to help with my strength,

I was an easy laugh even before PBA set in and made me laugh and cry without very much input from me.  My Mom however, does NOT laugh easily!   She is a hard laugh!  I constantly send her Memes and videos attempting to make her laugh. She just kind of smiles a little bit.

However, today she refused assistance to me for my personal care needs until I  doubled her salary!   She waited until I was in a compromising position to tell me this.  I laughed uncontrollably at this request which really wasn’t a request but rather a demand. As I was uncontrollably laughing, she laughed too!  Well, I obviously needed her assistance  at that point so I doubled her salary! After I did that, she decided to help me.

I just want it known that I pay my mother.$0  for assisting me.. So double that is $0!   I really like laughing WITH my Mom!!!