Month: July 2018

I  have been feeling pretty nostalgic these days! I remain in my home trying to get used to my new chair, (my knee STILL hurts by the way!)

But, I have a memory that for  probably the past12 or 13 years has completely warmed my heart!  My Mom will constantly remind me of it and make me laugh now that she knows the story.  My heart is warmed every time I think about it and I am very grateful to have had the experience!

It was just months after my diagnosis and I was at Farmer Jack’s for some reason. I don’t even remember why I was there! So here I am, walking around the grocery store, newly diagnosed with MS, and pregnant. Not even all of my family knew that I was pregnant yet! I don’t remember which aisle I was in but l I ran into my oldest brother. He knew I was pregnant. We stood in the aisle and talked because as a 19-year-old, unwed, college student, this news was pretty shocking!

As we were talking, pretty solemnly, because my life was REALLY about to change; his friend, Rich, walked up to us. I had known Rich for probably the last five years and he and my brother were pretty good friends.  He walked up to us and as he was almost to us,  when he smiled broadly at me and told me that he heard I was pregnant. When I nodded, he threw his hands into the air and with full, “Jazz hands” shook them and said loudly, “Congratulations!”

He was the ONLY person to say that to me! He is STILL the ONLY person to have said that to me when I was pregnant.   Now, 16 years later, I am very grateful to have had this experience. I looked at him when he did this and told him that he was the ONLY person to say that to me.  My brother and I just kind of chuckled with  the silent rise of your chest and shrug of your shoulders when you hear something like that.

I hold the memory  of this day dearly and very clearly in my heart and mind! I am so grateful that he told me this!

How life works out, Sean is the only child I have had and after a premature birth (8 weeks early) and a 31 day stay in NICU after he was born, I am grateful that SOMEONE was happy that I was pregnant!  I often think about the fact that I don’t know pure joy when finding out that I was pregnant.  There have proved to be many obstacles but Sean and I are alright, I think.

Thanks for letting me have that memory of pure joy with my pregnancy, Rich!  I LOVE that so much!

I’ve read about and discussed, “MS Hugs”  in various MS literature and in my support groups. To say it is a, “Hug”  somewhat of a misnomer because it does not feel like a, Hug” at all!  At least not anymore.

In the beginning years of having MS, I would feel this, “Hug.”  A slight tightening in my rib cage. It wouldn’t last very long but as the years went by and my disease progressed, this tightening would take my breath away! The spasm would get so large that it usually is accompanied by an involuntary groan.   The groan is how you react when someone squeezes you way too hard! Well that’s how it feels.

It is not a, “Hug” now,  rather it is a squeeze that affects my rib cage and spine where I lose my breath and it lasts just a little too long to be comfortable at all! It happens without warning and often. Sometimes, my legs join the party as well.

My legs will spasm straight outward.  I remember about four years ago at Barwis that Adam experienced this. He was standing close to me and I was seated on the table. My leg spasmed straight outward.

I have no control over this and they are not forgiving at all! Kind of how I am understanding my new wheelchair to be but that’s another story.   He yelled out, “You got my leg!”  And I put my hands up and shrugged because I had no control over it.

I get these hugs often in a day (mostly whenever I change positions) and I can see the effect it has on my Mom.  She tells me to be quiet when I groan quite loudly but there is no controlling it! I’ve read that these, “Hugs” are the result of a miscommunication of impulses within my body. It’s really not fun and it really hurts!

So, my Mom doesn’t like, “Lauryn” as my new chair’s name. She told me that, “We have to think of a new name for OUR chair.  I told her that it was MY chair’s name.  She wants to name the chair, “Thor” which I am NOT all about!

Sean chimed and said that we could name it, “Zion.” because the control pad is on the left side because I am left-handed. Deciding if a car is a girl or a boy depends on this side the gas tank is on. All of my cars have been girls.   I told him that I was thinking it may be a boy because the control pad is on the left similar to a gas tank of a car Being on the left; therefore it’s a boy.  He said that we could call it, “Z” for short.

My Mom was still insistent that I name it, “Thor.”  I told her that she can call it whatever she wants. It’s a slow learning curve getting used to this chair.  I don’t know how many times today I put my hands on either side of the chair as if I was going to spin the wheels.   That’s not how it works! The new chair is comfortable to sit in but it doesn’t quite feel like home yet for me.

I woke up this morning to my Mom  coming over and she asked me what the name of my chair was.  I told her that I was not all about naming it. I’m still trying to get used to it. I don’t particularly like it but I know it is good for my knee and for me.

It’s a learning curve trying to get used to it and trying to navigate around my house. It’s a lot! Sean helped me get into bed last night  because my Mom and I couldn’t figure out how to do it. My new chair it’s a lot higher than my previous chairs. I’m sure that I am taller than 4’6 sitting down but I’m not quite 5 feet tall.   this chair is pretty big!

It has settings that can lean me back to take pressure off of my butt which is good for me because I sit all day long. On Thursday at RIM, as Dave was telling me how to use the controls for the chair, he had me lean back in the chair till I got comfortable. I found a comfortable spot and I asked him how I looked. He looked me right in the eye and told me,  “It  doesn’t matter. Whatever is comfortable for you.”

Well, I’m still trying to get comfortable with having this chair.  I can’t quite process  all of these feelings yet.  Just before dinner, Sean asked me what the name of my chair was. I told him that I wasn’t going to name it and I’m not really all about naming it anyway.   He didn’t like that. He told me that I name everything, because I do! I have named all of my cars and I even have a named his car even though he says that is not it’s name.   It is! At least that’s what I call it!

I told him the process for giving a car a name a long time ago. The first song I hear on the radio when I start the car for the first time, either the first or last name of the artist, is the name.  I listened to him tell me  the process that I told him so long ago, so matter-of-factly and the fact that he remembered that; I told him that I would name my chair after dinner.

I opened Apple Music on my phone, pressed shuffle and turned it on. My chair’s name is Lauryn.   This was the song that came on when I hit shuffle:

Seemed fitting as Sean sat across from me.   Lauryn is a big ‘un!   I wonder how long it will take for me to get used her.

Yesterday, while I was at RIM after Dave showed me various things about my chair and agreed to deliver it to my home, he and Diane, “Alley-Ooped”  me back in to the manual chair I came in. Which I have had for a little over a year. As I got back in my chair I recalled the story of my dining room chairs. I told her about it. Here’s how it goes:

So I had just signed for my first apartment for Sean and me and my move-in date was August 1, 2005. I went with my Mom to Art Van to get furniture because I didn’t have any.  I ordered a couch, a love seat,  2 end tables,  a desk, a coffee table, and a dining room set.   I think Sean and I had a bare apartment except for the bed I brought from my parents’ house for a couple of days before they delivered the furniture. As a three-year-old, he loved running around the empty space. They  delivered the couches, 2 end tables, desk, and coffee table and the space got REALLY small with all that furniture!

I ended up sending back the coffee table and one of the end tables  because I didn’t have the room for them.  They delivered the dining room table but they had called me the day before delivery to tell me that the chairs were not ready. I called my Mom and told her that I wouldn’t have chairs for a couple of weeks.

My Mom has a beautiful Amish dining room set with removable leaves to make the table longer. She has 12 chairs to accompany that table. It is absolutely beautiful! Because she had so many extra chairs, she told me that she would let me borrow 4 of her chairs until my chairs came in so Sean and I could sit at the table.

I gladly accepted and was happy… until my chairs came in.  I vividly recall sitting in my newly delivered dining room chair at the table staring off into space and NOT being happy.   I had neatly lined the four chairs my mom lend me against the wall. My maintenance guy ended up coming over to fix something (What?, I don’t remember!) It was in the bathroom and I remember I stayed sitting at the table while he worked.

When he was finished, he asked me what was wrong and I told him that my chairs have been delivered and I don’t like them. He sat down at my dining room table in my newly delivered chair and asked me what was wrong with them. He said they felt fine. I pointed to my Mom’s chairs and told him to sit in one of those. He got up and walked over to the chairs and sat down on the one closest to where I was sitting. When he sat down, he had a surprised look on his face and just said, “Oh!”

I responded with, “I KNOW!  Her chairs are Amish and they hug your back when you sit in them. My chairs are NOT Amish and they do NOT hug your back. I have been getting my back, “hugged” for years and then for the past two weeks and now I have these chairs.   I don’t like them!”

I remember he laughed at me because we had become friends as I had to explain to my three-year-old why this man kept coming into our apartment, fixing things.  I told Sean that he was our own, “Higgly Town Hero.”   It was the show that Sean watched on the Disney Channel at my parents’ house because I didn’t have cable yet.

I told Ed that I would sit in this chair for a while until it got comfortable. I was still sitting in the chair when he left.

I told Diane this story because the wheelchair I came in that they had just put me back into was my chair and my new motorized chair was my Mom’s Amish chair.  Dave delivered my chair this morning.

I had to go to the doctor’s office with Sean for his appointment and I had to be in my manual chair so he could put me and it into his car. After we came home, my Mom just got me situated in my new chair.   It is so much more comfortable than my other chair. I have not wanted to get a motorized chair but  after discussion with Christy, I know that it’s better for my knee if I do. Then when I change directions in my house, my knee will not get tweaked. Because yeah, my knee STILL hurts!

The first Narnia movie came out just before Sean and I got our first apartment and I constantly have been thinking about Prince Peter before they go into battle.  This chair is, “For my knee!”

To say that I have not cried while sitting in this chair would be a lie and I’m trying to get comfortable navigating it around my house but like the Amish chair that I remember, it is SO comfortable!

So, this happened!

Well, I got fitted for my chair today at RIM.   There were lots of tears and nervousness on my part! Dave, (the representative from Binson’s)  calmed me down right away! He told me that as a third person who is not emotional about it that it’s OK to cry but then I will get comfortable in the chair and it will be OK. He offered to get me the really scratchy tissue they had in Diane’s office but my Mom,  thankfully, brought some higher quality tissue with her.

Diane came over and I wheeled next to my new chair. I started to cry again! She looked at Dave and  asked him, “Alley-Oop?”  And he said yes and then she looked at me and asked, “Alley-Oop?”   I told her that I didn’t know what that was and she explained that Dave was going to put his arms under my arms and she was going to grab my knees and they both would lift me up into the chair at the same time.

Once I was in the chair, Dave explained my controls and he was right! I got a  little bit comfortable in the chair and a little bit comfortable moving and somehow it got a little easier! He is going to deliver the chair (because I do not have a vehicle to accommodate it).   He is going to bring it to my house tomorrow, Monday, or Tuesday.

I am kind of, “pooped out” today because I cried so much but once the chair is at my house, I can talk about it a little more. This is really big!  I kind of learned that it’s necessary, but big!  My Mom stopped at Panera’s and got me an iced chai tea to help me feel a little bit better!

I got a call from Binson’s yesterday. In speaking with the woman, I started to cry… I guess I need to go back a couple of years to explain.

Sean was about 2 when I first started to notice I was having  balance issues. I was in college and I remember that I would, “wall walk” often.  I used to put my fingertips on the wall as I walked to class because felt unsteady.

I remember, one time in my linguistics class, the professor called me up to the board to dissect a sentence.  Four or five of us come up to the board and worked on the sentences at the same time. Once we were all finished, we discussed the diagram with the entire class while we stayed standing by the board.  I was probably third or fourth to have the discussion.

The professor stood in the back of the room and had us lead the discussion and he chimed in if we struggled. It was probably the second student talking where he interrupted them and asked, ”What  are you doing, Jennifer? Dancing?!”

I remember being embarrassed  and grabbing the ledge of the board often.   I didn’t know that I was swaying to try to find my balance. That professor was a jerk anyway! I think it was a few days later that I watched an episode of ER with my parents.  Sean was asleep. One of the doctor’s sister had MS and that was the first time I saw Canadian crutches. I called my neurologist not long after that evening to get a pair for myself.

I got them shortly after.  After that, I could never carry Sean when he was not in the stroller, rather I would pat my thigh and tell him to, “Hold mama’s crutch”  when we went places by ourselves.   Shortly after I got comfortable with walking with the crutches, I broke my right ankle when I was student teaching. I slipped on ice at my parents’ house before school one day.  The doctor told me that I broke my ankle, “into pieces” and I had to wait for the orthopedist to set it. They weren’t in yet for the day but when they came in, they did not cast me, rather gave me a boot.

Respectively, I probably should have been cast because it took six months for my ankle to heal. The orthopedist prescribed a wheelchair as my ankle healed so I could stay off of my foot. I was out of the wheelchair for a little while after I was out of the cast but then my Dad died. It was easier to be in a wheelchair during that very difficult time.

I used that generic wheelchair for years. When the seat would bow too much (because, let’s face it, I have a big butt! I know it!), I would just order a new one online. My neurologist’s nurse suggested that I get a custom wheelchair. I did not want to get one at all! I finally caved a couple of years ago.  Diane fitted me for a custom manual chair at RIM (Rehabilitation Institute of Michigan).   Binson’s built it.

Christie came to my house a while back to tighten the brakes and she watched me as I rolled around my house to the kitchen and back to the living room. As I’ve said before, I no longer have strength in my legs so my feet drag. Whenever I change directions, my knee gets a little tweaked.  Christie  told me that I should get an electric chair.

She told me that it would be better for my knee and it took me a little while to get kind of OK with that. I set up a neurologist appointment not too long ago and my neurologist prescribed one. Diane fitted me for it a couple if months ago and yesterday, the call from Binson’s  was to let me know that it was ready. There was a cancellation so I am going tomorrow to get my chair.

I don’t have a vehicle to transport an electric chair in my car but Christie explained that I need it to use in my house.

I have spent today trying to process all of this and crying! I’m hoping to get enough tears out today that I won’t, “poop out” tomorrow because I will cry tomorrow! Hopefully, it won’t be as much if I can get the tears out today.

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