Month: April 2018

4.26.18 “Poop Out”

So, I have figured out now that if I am really excited about something, later that day and into the next day; I “poop out.”  A prime example of this is Thursday. Sean got his braces off.

   

I was so excited for this to happen in the days leading up to the appointment!  My friends and my Mom warned me to not be so excited because I would, “poop out.”   Sean said that I would fall asleep on the way home. My mom came with us to drive just in case.

Well, he was right. I, “pooped out” on the way home!   I was so extremely excited to be there and my Mom and I could sit on the couch in the back to watch him get them off. My Mom sat on the couch and she just put me close to it. The tech taking his braces off was named Holly. I told her that it wasn’t this exciting when I got my braces off 23 years ago and that I was so excited! I asked her some questions about his retainer use  after his braces are off.

It wasn’t until she was finished and Sean was in the bathroom that she came over to the couch and sat next to my Mom who was sleeping.  She tapped her leg, woke her up, and handed her a clipboard and started explaining the things she needed to sign when my mom looked at her and pointed to me. My mom told her that I was the, “responsible party.”

Holly turned and looked at me and asked, “Aren’t you his sister?”  I laughed and told her that I was his mom. She gave me the paperwork to sign and I signed it. I think I was so excited about this day because his teeth have  come a very long way!

Sean didn’t want me to take these pictures but I assured him that it would be a nice comparison when his teeth are straight. In this picture, I remember telling him to, “Show me his teeth!”   I took this picture on  June 13, 2015.

This picture was taken July 20, 2015. His vampire teeth had already started to move! These are the only two pictures that he let me take. I’m sure if he was a girl, he would’ve let me take more. I wanted to make a Flipagram of the progression. I just have before and after.

He’s had braces for three years. He started seeing the Orthodontist when he was seven. He needed mouth surgery to get four teeth pulled before he got his braces on and surgery after the braces were on to expose teeth that were below his gum line on his lower jaw.

He humored me to take this one picture before he went out because I told him that as a single mom, paying for this all by myself, this moment makes me really proud! He said that he hasn’t done much to be proud of then. I told him that this was not the proudest moment I have had because of him but the proudest moment I have had because of me!

Also, I think it takes me TWO days to fully recover after I, “Poop out” now!  #MSsucks!

My Girl, Lauryn

I am excited because for the last two Saturdays, Sean has driven me to church. Once I hurt my knee, I tried to continue going to church but it hurt too badly so I had to stop. I thought that after I recovered from surgery, I would make it back to church.

The continued pain in my knee has kept me away for almost a year and a half. After my appointment with Dr. Moore a couple of weeks ago, I learned that nothing will be re-injured in my knee.  It is stable and I just have to deal with the pain. What better way to deal with this pain then to get back to my spiritual home?

For me, going to church on the weekends is extremely important!  For years, Sean and I have been going to mass in the early evening on Saturdays.   I started going on Saturdays probably when Sean was in fourth grade and started track. His track meets were extremely long (he threw shotput which was at the nine am and ran the boys’ relay which was the very last event  at around four).

I would be there from nine in the morning to four in the evening. Most of his meets were at Divine Child because they had/have a good track.   It worked out easily for me just to have him push me over to the church when we left the track. I liked it a lot too because that meant I could sleep in on Sundays.

Because he’s driving,  We listen to what he wants. He plugs in his phone and we listen to his Apple Music play lists. I’m not a huge fan of his music! And he has told me that, “You never know how many swearwords are in a song that you really like until you are listening to that song with your mom.”

That is SO true!  I just skip to the next song after I hear three inappropriate things. He put on a new Drake song  when we left after mass and I immediately dug it!  I dug it because it had a sample of Lauryn Hill.   I had him play the song again and he’s asked me why because it has, “inappropriate words” in it. I told him that I wasn’t listening to the Drake part at all, I was just listening to my girl Lauryn! The song that Drake sampled, was my jam back in high school.

He told me that two of his friend’s moms like that song too and I responded with, “OF COURSE!  IT’S LAURYN HILL!!! He went out with his friends tonight and I am not putting that Drake song on my blog because it has bad words in it but I will put my girl, Lauryn, on so here it is!:

I HAVE to get reacquainted with this album!!!:

“Nothing Compares 2 U”

So, I guess old habits die hard. For probably the last six or seven years, I have been waking up at 4:30 to get ready for work.   I haven’t slept well for a couple of years anyway and coupled with my constant and continuing knee pain, I don’t sleep very well now. I am usually awake early to make sure Sean is up and getting ready for school. GMFB  is on at seven so I have to be up for that anyway!

This morning, I got an alert on my phone that I just happened to check just before 6 o’clock.  This was the alert:

Sean was in the shower so I just HAD to listen to it! I had never heard it before but I remember hearing that Prince was the one to write the song.  I hadn’t heard Sinead O’Connor‘s version of this song in so long! Her version reminds me of my birthday when I had to be nine.

My brother Steve took me to Fairlane mall and bought me a birthday present. I got white pants with black polkadots and a black vest with white polkadots. We went to Friendly’s to get a  couple Reesie‘s Peanut Butter Cup parfaits.   Sinead O’Connor’s version played over the mall’s speakers as we walked to  Friendly’s.

I remembered getting these with my brothers all the time when Friendly’s was in Fairlane mall  when I was a kid. I actually texted my brother this morning to ask what those parfaits were called. He told me that there are no longer Friendly’s in Michigan but they are in Ohio and are completely worth the drive! I told him that maybe Sean  and I will have to go on a road trip!

When Sean got out of the shower and dressed and ready for school, He came into my room to help me get out of bed before he left for school. As he put my shoes on, I told him about my birthday shopping trip with Steve and described what I got.   He thought that sounded ridiculous but I told him they were the epitome of cool! Especially if I wore a white turtleneck underneath the vest!

This song has been in my head all day long! I’m going to ask my Mom for a picture of me with those pants in that vest, I’m sure one has to exist! I remember getting those parfaits and they were garnished with a Reese‘s cup and whip cream. We would lick the whip cream off the Reesie‘s cup and place it on the napkin as we ate the parfait and the dessert was the Reese‘s cup.

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!

Heroes

I saw this commercial for the first time on Monday. I wanted to write a post about it but all week I have not been feeling well. Sean left the hall light on when he left for school. I was sitting in my kitchen drinking my ginger water when I rolled into the living room to see something Kyle was saying on Good Morning Football when I saw the light.   I made a mental note to turn the light off when I finished my water. Ginger water tastes absolutely disgusting warm so I wanted to drink it all while it was cold and just out of the refrigerator.

I finished my water and rolled to the hall to turn off the light.  This commercial had just started but I was concentrating on keeping my feet elevated and off of the floor as I pushed myself to the hallway light switch.   Doing this has become increasingly more difficult.  I turned the light off and backed up just in time to see the tail end of this commercial. I heard the Arby’s guys say, “Gyro” and I laughed out loud!

I thought of my, “Heroes” Mini lesson that I taught my kids when I used to teach English, when I taught the novel, The Outsiders.

I had this really cool hand out that asked the students to write about their idea of a hero. It went along with the idea that Johnny Cade felt like a hero when he was saving the kids from the burning church.   I prefaced the lesson with these two songs:

I really liked the Foo Fighters song (reminds me of high school and Varsity Blues) and just needed another song about heroes so it wasn’t so random that I played Foo Fighters for my students. It also  illustrated the fact that everyone has different perceptions of heroes just like people have different tastes in music.  I remembered having my kids vote and no one liked Foo Fighters, they all liked the Mariah Carey song.

I saw that Arby’s commercial many times on The Football Network as I watched Good Morning Football.  I saw different versions all week! On Thursday, Sean picked us up some Arby’s for dinner. I got the turkey gyro (with no onions or tomatoes).  It was really good! Sean also brought me a mint shake because he knows that I love mint chocolate chip!   Nate wasn’t there all week on Good Morning Football. I missed him!

This Sucks!

I try my very best not to have days like today; but, in the past 17 years, it happens.  I try to not let it happen very often but…  there will be a day where I realize, “this sucks!”   It’s just an annoying feeling that will not go away! I try to busy myself by doing my dishes or something  but the tears just leak out of my eyes!

I can’t help but think about the extreme cruelty of all of this!   My body is fighting against itself EVERY DAY!!! It’s days like these where I think about what I really have lost in terms of my abilities and  I think about my true limitations. This just sucks!

I received a mug I  ordered a while ago yesterday in the mail and I opened it today:

It came in shirts and sweatshirts but I thought that I would use a mug more often. Here is a better picture of the prayer if you cannot make it out on my mug.:

I  find myself having difficulty remembering what my old self was like.  Regardless,  often I do wish all of this was a bad dream; A REALLY bad dream!  So today is difficult but what I think is tipping the scale and making it TOO much to handle is the extreme pain in my knee!!!

This just sucks!!! GRRR!!!…

Mirium & Tirzah

I was nervous to meet my new neurologist on Tuesday. As my Mom pushed me into the elevator on the first floor, we waited for the elevator to fill up to make my way up to the Neurology clinic on the 11th floor.   My Mom pushed me into the elevator all the way in to the left corner. I was facing the back wall and didn’t really turn my head to look around because my peripheral vision is not good.

As the elevator filled up, a woman with a walker came into the elevator and stood to my right. She looked at me and smiled. She immediately put hands on me and began praising God! I am a spiritual person and I did not mind this at all. As she was speaking over me all I could do was nod and say a quiet, “Amen.”

I will gladly take any prayers offered on my behalf because having MS is definitely NOT easy! The pain in my knee and circumstances surrounding It is not easy either.  I think her prayers over me before my appointment helped me to be more accepting of my situation. It made me so happy that my Mom and I laugh together at my limitations.  As I wrote my blog post on Tuesday, I had a feeling that my acceptance would be fleeting.  It was. It is!

My knee has really hurt today! It’s a constant ache with no immediate hope of getting any better. I suppose  in a way, I am grateful that I have MS because it does not hurt as much as it could because I can’t feel my legs fully.  Today, it hurt enough! I tried to concentrate on other things because I had dishes to wash and I had to make my garlic tea so focusing my attention on other things helped me not to think about the pain. My Mom came by this morning to help me as she does every day with my morning routine and to rub the numbing cream on my knee.

I have often told her that she is Mirium and I am Tirzah.  These references are from  Ben Hur.   A Charlton Heston movie that is a huge part of my childhood, especially around Easter! I didn’t even see it this past Easter which made me sad and I didn’t even get to mass on holy Thursday. I don’t like to go out in public very often if I don’t have to because my knee hurts and I don’t want to be around people who could hit/hurt it.

I only have left my house since my injury for physical therapy or doctor’s appointments.   As Sean’s sole legal guardian, I had to accompany him to the secretary of state to get his license. Other than that, I am home. The last time my Mom came over today was just a little while ago to rub the cream on my knee again. I reminded her that she is Mirium and I am Tirzah and she agreed.  The end of the movie is so wonderful for them and promising for me as Tirzah.

I’ve added some random clips if you have never seen the movie before. I would definitely recommend it!

This is an extremely long and old movie.

In this clip, both Mirium and Tirzah are lepers now.

At the end of the movie, after the crucifixion, they are cleansed.

This clip is better footage of the cleansing.

Aye Papá

I got a flat tire last night after coming home from my doctor  last night. My mom tried to put air in it but the rain started to pick up and I told her Sean would take care of it today.   I woke him up and sent him to Warholak tire to get it checked out.  I’ve told him stories about Warholak.

My Dad sent me there when I was 16 to get his tire fixed. I was a little intimidated by my surroundings being there but  eventually Paul I showed be in to get the car looked at. I don’t remember what was wrong with my Dad’s tire but I told him that my Dad said that he would know what to do. He asked me if I was a, “Rios.” I smiled broadly because that was the first time I had been asked that question.  I nodded and told him who my dad was.

He told me that I was a lot better looking than my Dad and to make sure to tell him that! I remember that I got a pen! The BEST pens in the world!   I called there this morning to see if it was a good day for Sean to bring my car in. They told me it was so I sent Sean.

It’s no secret that I have had a thing for Bradley Cooper for a long time! I finally was able to hook up my Netflix account to my TV at home. I have been watching Burnt nonstop!   I love that movie!

I’ve also been missing my dad a lot these days! With Sean getting his license, it compounded those feelings! I imagine my dad  being proud of Sean getting his license and taking care of my car today. I searched YouTube to find a video clip of the exact moment I thought of when Sean got his license but I couldn’t find it so I recorded it off of my TV.:

CLICK PICTURE TO VIEW MY BOOTLEG VIDEO.

  

The clip is of the restaurant re-launch and Bradley Cooper isn’t even in it but the maître d’ is. I watch this movie over and over and it keeps me company in this bad weather and with the pain in my knee.

4.3.18 Acceptance

I had an appointment with my new neurologist today. My former neurologist, who has been my doctor for 15 years, is retiring. He stopped in to see me as I waited for my new doctor. I wished him well and told him that I will miss his handshakes because he has the warmest handshake I have ever experienced!  He has a warm smile to go along with it too!  He is really tall,  bald,  and has glasses.

My new doctor’s resident came in to evaluate me before she came in as I was speaking to my former neurologist’s nurse. She will be my new neurologist nurse as well.   I have had routine check ups with a neurologist for the past 17 years and I am aware of all the tests they ask me to complete. They test my arm strength, my leg strength, and my vision, among other things.

It pretty much has become routine to do these things and my former neurologist is aware of how I fare with them.  I had never seen this new resident before and he sat at the computer and asked me a bunch of questions for which I immediately knew all of the answers and was not shocked or embarrassed by some of them  or my answers. My Mom was in the exam room with me and told me to slow down because I was rattling all of the facts of my disease too quicklyfor him as he typed.

My mom watched as he was testing my vision and had me follow his finger from side to side. My eyes shake the further to the side I look. He kept asking me if I got double vision which I did not. My arm strength it’s not so bad which I am grateful for and I have not had noticeable  differences in my cognition either and I am grateful for that as well!

I remembered that my brother reminded my son of something my Dad used to teach us about accepting pain and discomfort. My brother told my son to let the pain pass through his body and not to resist it. He told him this when my son was wrestling when he was about eight and hearing him say this, I remembered my Dad saying that  to us as well.

It’s been 17 years and I find myself being more comfortable with the acceptance of this disease. It’s raining and my knee hurts so badly but I have to accept this pain because it’s not going anywhere just like I accept my limitations with this disease. My new doctor came in and she  started doing some of the same tests on me as the resident did.

I was seated in my wheelchair with my leg rests off and my feet on the floor. She told me to not let her pull my feet up and to resist a number of times. She put her hand on my calf and lifted up as if I was not resisting it at all. I looked across the room at my mom and we both started to laugh! I felt better that I finally have reached an acceptance point with everything that is going on!

This acceptance does not make it OK or even easy to handle but there is no use in resisting it. I told her that I thought I would be a success story and that MS would not  limit me. That is NOT the case! I appreciated that she told me, “Not yet!”  Which goes along with the feeling that I have had that a cure is so close, I can taste it!

The way this disease has affected my abilities is horrible and the constant pain in my knee is horrible as well.  I appreciate that at this moment, I feel a wave of acceptance of all this turmoil in this horrible weather.  I am, by no means, saying that tomorrow will not be a tougher day but for right now,  at this moment, it’s easier for me to have this feeling of acceptance of it all.   It probably is fleeting but I had to acknowledge this feeling as my knee and my body hurt so badly. I am trying to let the pain pass through my body.

As For My Knee…

I met with Dr. Moore last Friday  to discuss my most recent MRI. Another surgery is not needed at this point. Please pray for me and offer good vibes so I will be able to endure this pain…  even with the current remedies in place, it is a constant, dull, and gnawing ache that I feel in the back teeth of my lower jaw  I’m not sure how I will be able to live with this pain too. I suppose there is no other choice. Please pray for me!