Category: Barwis Methods

A second pillar for my health and on my road to walking is the work I’ve been doing with the trainers at Barwis Methods.

Dread #2

So, I had my MRI last Saturday, on St. Patrick’s Day. I paid attention to everything and wanted to make a joke about having to change my pants and wear the hospital-given paper pants for my MRI.   Sean made fun of them when I got home until he realized that they had pockets! There was no music but I was given those foam earplugs to lessen the sound of the banging and clacking from the machine.

I had never been in this room for that MRI but I knew what to expect. I closed my eyes for the first part of it and thought of the movie, Juno because Sean is getting his braces off next month.   I thought of Michael Rhoades because he was the first person I told about Sean needing braces and how much I was going to have to pay.  I don’t know where he is now but I thought about telling him that Sean is getting them off.  Anyway, my teeth have really shifted and the 23 years since I’ve had braces.  I’m going to have to fix them because Sean will have perfect teeth.

I would have to do the Invisaline thing because I am a chain gum-chewer and I’m crazy about flossing my teeth so metal braces wouldn’t do! Plus I’m old! So, I thought about that guy eating the orange TicTac’s. That’s what I would have to do because I would have to lay off the gum with braces I think.   Anyway, I had all kinds of random thoughts while doing my MRI and my left leg was spazzing out like crazy but my right leg was locked into place so it didn’t move while they took the pictures.

Since my MRI I’ve been really thinking about the fact that there is something wrong with my right knee. 18 months later, it still hurts! I don’t go to Dr. Moore’s office again until March 30th but what do I really want?   To have surgery AGAIN or not? I don’t know!  All I know, is that knee surgery ain’t no joke!  Even the non-surgical tendon scrape really stunk!

It is excruciating when my knee pops out of its socket and my Mom has to pop it back in. Even my son has felt it when it pops out sometimes upon transfer and he thinks it’s gross, because it is! Can this be surgically repaired? Am I just stuck with a bad knee that pops out all of the time? I don’t know.

I’ve been trying NOT to think about this so much because it stresses me out and stress and MS are not friends but, it hurts!  I dread what Dr. Moore will say on the 30th. It already hurts without a third surgery but recovering from surgery hurts a lot too! This just stinks!

A Passive Patticipant

I told Sean a few weeks back that, and it was more of just me making a statement to him that pretty much everywhere I go, I am the only person in a wheelchair.   It was just a statement of fact and I told him that it feels kind of weird. He thought about it for a minute and I told him that I wasn’t quite sure how I felt about that but that’s just the way things are.   None of his friends have parents in a wheelchair and when I’ve been to school functions for him, I am the only person in a wheelchair most of the time (sometimes there is a random grandparent).

 I don’t think this bothers me, it’s just the way things are. Well, I had an appointment last Thursday downtown at RIM (the Rehabilitation Institute of Michigan to get fitted for a different wheelchair).   I’ve been there before and I was prepared to see TONS of wheelchairs. Valet parking is half off if you are in a wheelchair. As we waited our turn to get our car checked into valet, I watched as a person was being unloaded from his van in his wheelchair.

I got a strange feeling in my stomach and chest that didn’t go away the entire time I was there. It took me until today to realize what that feeling was and to put it into words. That’s why am writing it here. When I used to still drive, I would load my wheelchair in the trunk and put my right hand on the doors to brace myself as I walked to the driver side to get into the car.   This was back when I was still driving with my feet. I was still pretty independent when I started driving with my hands.  When I taught, I had arranged for my kids to have a field trip to go see a movie and I had just gotten my hand-controls and my chair topper.

I remember all of the kids were loaded into the buses as I rolled up to my car door, opened it up,  got into the driver seat, operated the chair topper so the arm came down and pulled my wheelchair up and into the compartment on top of my car, and closed it. I was winding up the cord to the control wand with my feet still outside of the car as it closed.  The sixth graders were in the bus directly behind my car and could see me do all of this. And I will never forget that as my chair topper closed, the entire bus erupted into cheers and claps! “YAY!” I thought, “How cute are they?!”   I smiled widely and waved to them just before I swung my feet into the car and closed the door.   I had to drive separately so I could get us all checked in before the buses arrived.

As I watched this man being unloaded from his car, I thought about that day when those kids cheered for me. As the van pulled away, and it was our turn to check our car into valet, my mom got out of the car to assemble my wheelchair.  This is a pretty long process because I can no longer just throw my standard wheelchair in the trunk of my car or even have it pulled up into the chair topper. I have a customized wheelchair now, one that was made especially for me.  It completely comes apart to be put into the car and needs to be reassembled outside of the car before I can get into it. As my mom, or my son, are putting it together, I am seated in the car.   Most of the time, I have the heat on full blast because I am always cold now.

When the chair is fully assembled, my mom, or my son open the front passenger side door to get me out. Now, note that I said, “Get me out.”   There is no throwing my chair in the trunk and walking to the driver side door for me now. They have to pull my feet out of the car and onto the ground outside.   Once my feet are set, they grab my hands to pull me so I’m sitting on the edge of the seat.  After I have  rested for a moment, they lean in close to me so I can put my arms around their neck. They, “count it out” (mostly for my benefit)  to transfer me from the car seat to my wheelchair. Once in my wheelchair, they grab just below my knees to, Count it out” again to push me back so I am seated comfortably in my wheelchair.  Then they buckle me in. The whole time they are doing this, I just sit there. They both are quite adept at doing this and I am beyond grateful for it. I told you they are my “Sacreds.”

I was thinking about all of this  just before we got into the doors of RIM.  It has been so gradual, that I don’t even know how things changed from me zipping around in my wheelchair by myself to being a passive participant in the movements of getting into my wheelchair and being pushed.   How did I go from wheeling myself everywhere in my wheelchair to being wheeled by someone else most everywhere I go?!

This question was heavy on my mind as we got into the building. There are wheelchairs everywhere!  All different types of wheelchairs.   The only other place where I see multiple wheelchairs is at Barwis. But, at Barwis, they are my peeps! I didn’t know anyone at RIM so it felt completely different and I didn’t like the way it felt.  I felt uncomfortable and it made me miss Barwis so much more!   I told the woman at the front desk who I was there to see and she gave us directions on where we needed to go.

As my mom was pushing me kindof a long way to where we need to go, I was lost in my thoughts.   It wasn’t until my mom said, “That man was checking you out!” that I was torn away from my thoughts.  “What?”  I vaguely remember seeing a man with blonde hair with a polo and khakis on. He obviously worked there.  I didn’t believe my mom because I never have felt so invisible in my life but she was positive that that is what he was doing!

I told her that I wished I knew that or that I saw it because maybe it would make me feel a little bit better.  We have to go back in a few months so maybe I will see that guy then. I’m not really sure that matters though… I wish my knee would stop hurting so much!

5.1.18. “It Goes On”

My knee popped out this morning.   I hadn’t felt that pain in a little while, I mean my knee has been hurting this entire time, continually since September 21, 2016; but I haven’t felt, “knee pop out” pain in a little bit of time. I thought that pain was over with. I’m still trying to get used to the” “gnawing, teeth clenching, pain in my lower jaw” feeling of pain I feel now but I thought I was done feeling that, “knee pop out” pain.

Apparently, it was not.   I’m not sure if I feel or hear the click of my knee popping out of it socket more but either way, the feeling is intense!  Immediately following my gasp and bugging out eyes is me trying to say something but all that really comes out is, “my knee” and my frantic pointing with my right hand. My mom knows what to do. She placed one hand on my ankle and the other on my calf and felt my knee as it clicked back into its socket, and by the time she looked up at me and said, “I felt it [pop back in]”  I was crying.

I would describe them as pitiful tears. They were quick, silent tears streaming out of my eyes in hot streaks down my face.  I caught the look in my Mom’s eyes and I tried to figure out what kind of look it was.  I talked to her about it this evening. I told her that I wasn’t sure how to describe the look that was in her eyes. She asked me what I have to come up with and I said, “Sad.”

She agreed with my descriptive word. She said, “That’s enough now. That’s enough pain.”  The reality is it’s not. It’s not, because it continues. It’s going on 19 months. It would be terrible if I could not remember what a normal knee feels like just like I don’t quite remember what a normal body feels like having MS.   But, actually it’s even MORE terrible having a perfectly fine left knee right next to the pained one.

I took a deep breath and I am praying for the strength to endure this ongoing pain.  My mom said, “Just like in Ben-Hur.”  I knew exactly what scene she was talking about. I have referenced this movie before here on my blog because for me and my brothers, it is a movie we have just about committed to memory because we’ve seen it so much.   The attached clip is  that scene when Messala is dying and he tells Judah about his mother and sister still being alive and being in the Valley of the Lepers.

My pain is just like Judah’s search for his mother and sister… “It goes on.”

More Than I Can Say

The last time I trained at Barwis Methods was September 20, 2016. I injured my knee on September 21, 2016. I had an appointment with Dr. Frush the following Tuesday on September 27, 2016.  He knows about Mike’s work with helping people to walk and my work with the First Step Foundation at Barwis Methods.   After his examination of my knee, he warned me to not go back to Barwis Methods until my knee stopped hurting.

It is May 2, 2018, going on 19 months later and my knee STILL hurts.   I’ve had surgery  on my torn meniscus and a tendon scrape in addition to two MRIs  and countless doctor’s appointments with Dr. Frush and Dr. Moore.  I saw a post from Mike Barwis and he was with Brock Mealer about the opening of a new center in Florida.

It squeezed my heart because I miss Barwis Methods more than I can say!   I trained there from July 12, 2013 to September 20, 2016. I was there two or three times a week where I consciously worked on getting stronger and walking with each one of my trainers there who believed that I would one day walk!

I have the biggest ache in my chest because I miss it so much! I once to talked to Sean about muscle training rotation because he was working out during football season. He told me that you have to change up the muscle groups you work each day. I told him that every day I work at Barwis is “leg day.”   Because it really is! But I can’t be there with my hurt knee and that hurts me more than I can say!

“Awww, Barwis!”

My son drove me in my car to church last Saturday.   I also got my eyebrows done on Wednesday so those were the only two times I left my house this past week. Both times, as he was getting me out of the car, a song began to play.   Whether it was, “Ridin’ dirty” or “Apple Bottom Jeans”  I had the same response, “Awww, Barwis!”

I say that because both of those songs are songs I heard at and they remind me of Barwis Methods.   Sean understands that these songs remind me of Barwis and he pointed out that a seemingly inappropriate song causes me to smile and say, “Awww!”

I began to laugh because it’s true.  Hearing them in a gym where tons of athletes are working out is different then hearing it in my car with my son but my response is the same, “Awww, Barwis!”  I got an email yesterday regarding the upcoming First Step Foundation Golf Outing.  It is the fourth annual golf outing and I have been to all of them! My mom, my son, and me.   I watched the video that was in the email from last year about 15 times and have cried EVERY TIME because I know all of the people in the videos and I miss them terribly! I haven’t heard Mike’s voice for a very long time and that also made me cry!

I am no longer a, “First-Stepper” because I have not been there for close to two years because Dr. Frush (who was at last year‘s event)  told me not to return there until my knee stopped hurting. Well, my knee still hurts! I wake up in pain and go to sleep and pain. I hope to get back there one day soon and can’t wait to see everyone in July at the golf outing. It’s at U of M, so OF COURSE I’m going!

Loop

Last night was the MOST my knee has hurt as I was trying to fall sleep since September 21, 2016. It hasn’t STOPPED hurting (in varying degrees) since September 21, 2016. I got a couple of days of reprieve after my tendon scrape but then it started up again.

Today, I stayed inside my house binge watching Friday Night Lights. During the commercials, I heard my three Orthopedists voices telling me three pivotal things on loop.

  • Dr. Anderson, telling me 18 years ago that my meniscus was intact  after ACL reconstruction and that was good because that would be really painful if it was.
  •  Dr. Frush telling me NOT to go back to Barwis until my knee stopped hurting after my meniscus repair. (my last day working out there was September 20, 2016)
  •  Dr. Moore explaining my continued pain (it’s in my kneecap now) as, “Whenever there is a trauma to the knee…”

He prescribed more physical therapy so they could tape my knee.  I can’t even expound on this any further right now because my knee is REALLY hurting again tonight and I would like to get some sleep…

 

Devastating

 It took me a couple of days to process this but, you know, having had MS for 17 years and having torn my meniscus almost 2 years ago, I have dealt with some pretty devastating things. I don’t want to enumerate them because I do not like to dwell on them.  However, Sunday morning, I experienced a pretty devastating thing!

 It was so devastating that I have to write about it to get it off of my chest. The last time I worked out at Barwis Methods was September 20, 2016.  I began working out there on July 12, 2013. My experiences there were some of the most important of my life! I’ve spent the last 17 years losing control of my body  as my MS progressed and working there, I was slowly getting some of it back with the intention of walking again.  EVERYONE there gave me that hope that it would happen one day! The Barwis Methods tab on this blog chronicles all my experiences there and all the WONDERFUL people I love and are more important to me than they know!

Dr. Frush told me when I injured my knee to NOT return to Barwis Methods until my knee stopped hurting.  I STILL go to sleep in pain and wake up in pain and I am in pain all day long!  Sadly, I have not returned to Barwis.

A couple of months after I began working out at Barwis Methods, I noticed that my bathroom floor was cold! I could feel it on the bottom of my bare feet! I was so excited that day that I told Sean about it and he told me that it ALWAYS has been cold. I told him that the floor in our bathrooms of our apartments were not cold and he told me that they also were.

Well, after close to two years of NOT working at Barwis Methods, my bathroom floor did NOT feel cold on Sunday morning  as my bare feet touched the tiles. When I realized this fact, I cried! They were sad, pitiful tears! It made me miss Barwis even more!   Once I get okayed to return to Barwis, it may take another four years but I plan on getting some of my muscle control back! I’m just not sure when that will happen and in the meantime, I am sad, devastated even because the realization I came to on Sunday of the loss of feeling in my feet is devastating to me.

The Barwis Family

Yesterday,  Barwis Methods held their fourth annual golf outing and luncheon. It has been just shy of 22 months since I  have been there. I told my Mom that I am just a, “has been” but I still wanted to go.  It was held at U of M in Ann Arbor. Duh! I had to be there! My Mom and Sean accompanied me as they always do and we rolled by the Big House before we got to the golf course. If it wasn’t so warm outside  and if my knee didn’t hurt , I completely would have gone to get a closer look And take pictures!

I wasn’t sure where to go so my mom told me to call someone. I texted Deb and she met my mom as my mom walked into the building. My Mom came out shortly with her thumbs up and told me that we were in the right spot and I could go in.

Sean pushed me into the building and Deb met us between the two entrance doors. She gave me the tightest hug which I returned just as tightly! I told her that I was nervous to be there because it has been almost 2 years since I have worked out at Barwis. She told me that once you’re a member of the Barwis family, you are ALWAYS a member of the Barwis family!

We made our way upstairs (the elevator talked which kind of tripped me and my Mom out!) and I was getting situated at the table with my back to the door when I heard Mike’s unmistakable, raspy voice! I kind of was startled to hear it and was excited that once I was situated at the table, I would turn and see Mike! He came over and hugged all three of us  multiple times. He hugged me just as tightly as Deb!  And I hugged him back just as tightly! I loved being there!

Before we ate, Megan came over and also hugged me so tightly,  multiple times as well ! She’s now in Florida and I told her that I have to make a trip to Florida to see her and Nick Montoni!  I was so glad to be there!

After we ate, Brock and Mike gave their speeches which made me cry and I was not even  embarrassed that I was crying!  Brock was engaged in speaking to somebody and we left and saw Jade in the hallway. She hugged me just as tightly as Deb and Mike and Megan did!   She even reads my blog!

I really felt like a member of the Barwis family! Brock messaged me and he apologized that he couldn’t talk to me but he saw me and said that the event would not be the same without me! I really am part of the family! I have been to all for golf outings! I miss Barwis more than I can say!  I texted Mike last night telling him how poignant what he said was. He told me that they all love me and I told him that I love them all right back! I can’t wait to get back there! I couldn’t write about this yesterday because, of course, I pooped out after I got home because I was so excited to be there and get and give all of those wonderful hugs!

2 Years

Two years ago today was the last time my right knee felt normal. Since then, my  meniscus has been torn, my knee has been swollen and in pain, and it’s popped out of its socket.   Two years ago today was the last time I worked out at Barwis Methods. I can feel my body feeling weaker and my muscles getting atrophied.  That’s been a lot!   My knee hurts today, as usual, and it’s frustrating!

This morning on Good Morning Football, I learned that Joe Mixon partially tore his meniscus last weekend.  He is a running back for the Cincinnati Bengals and he was drafted in 2017. He had his  meniscus surgically repaired and plans on playing in the game this Sunday against the Panthers. Will Selva,  (who is also left-handed), said it in passing as he spoke of the news regarding different members of different teams.

I heard that and it completely shocked me.   I had my meniscus surgically repaired over a year and a half ago and I still haven’t been to Barwis  and it still hurts! I can’t understand it.   I know that not being able to work out at Barwis is not a good thing. Michael told me one time that I am fighting a losing battle trying to keep my muscles communicating with my brain. He didn’t say that I will ultimately lose but he told me it will be difficult. Not being there breaks my heart more than I can say!

It took me a while  to realize what today was and even what tomorrow is going to be.  Two years ago today, was the last time I worked out at Barwis not knowing what would happen to years ago tomorrow! It’s crazy how time flies and yet I am STILL in pain!

 

9.25.18 Tens Unit

 I had my appointment with Dr. Moore early this afternoon. I called his office last week after when my mom was transferring me, my right knee overextended backward and it felt like there was a wiggle in the middle of my knee.   That day, my knee hurt in a whole new and different way! Today was the earliest appointment I was able to get with him.

 Pam called my Mom and me back and took my blood pressure and talked with me about what was going on. I explained what had happened and told her how my knee hurts so much when I am not seated in my motorized  chair with my legs elevated and my back reclined a bit.

Dr. Moore came in and I told him about the overextension and he asked about swelling. He unbuttoned my tear-always and pressed on various spots of my knee and extended it and watched how it was reacting while he stretched it out.  It’s still hurt everywhere he pressed!

He asked me about my use of pain meds and the topical  cream that he prescribed. I told him that I needed to take the Motrin 800 when my knee overextended for a few days and how the topical  cream just takes the edge off but my knee still hurts.

He  thought very deeply about what to do. He told me that he was willing to prescribe physical therapy but that there wasn’t much more they could do there. I told him that I haven’t been to Barwis because my knee still hurts. I asked him about the fact that my body is having problems, “bouncing back” from surgery. Having had MS for 17 years, my body cannot recover as quickly as it did when I had ACL surgery when I was 17.

We talked a little bit about a knee replacement and he told me that I was too young and he wasn’t sure that Dr. Frush would want to entertain that before I was 50. I asked him if I was just going to have to deal with a painful knee for the next 14 years. He thought more intensely and decided to  prescribe a Tens Unit.   My mom and I picked it up after leaving his office:

We picked it up at the Binson’s in Dearborn. My Mom put it on me and I still have it on.   Having this on, poses a few questions.   First, I am most grateful to have it on because it’s helping my knee to not hurt as much but my legs are extended out and it seems to be working against me having MS. I wear compression socks on both legs and I have been wearing them for a couple of years. Because I had to put the pads on my clean, bare leg, will my leg swell by not wearing my compression sack?   How mobile will I be well having this on my leg?  It seems kind of constricting with the pads and the cords.   Lastly, how is my leg going to feel during the night without it? That makes me a bit nervous.

For right now, with the electric stim. on my knee, it’s helping my knee to feel better. How limiting is this going to be? How feasible is it for me to have this on my leg all the time? Will the pads end up burning my skin? Which was something they talked about in the literature that my Mom read out to me before she put them on.

Dr. Moore told me to try this out and to call him and come back in if I have anymore problems.