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So, I am still very much trying to process all of the things that went on Tuesday. I’m really not getting okay with any of it. But one thing I will say is that the fourth thing I did was to get new shoes. Now, getting new shoes for me it’s not because I WANTED them at all but because I NEEDED them! My MS ridden feet cannot handle being in normal tennis shoes any longer.

This is kind of a big deal for me. I have always worn shelltoes. In high school they were white and now I wear black ones. Or at least, I did. But then I was diagnosed with MS. Within the first three years, I realized that shell toes were too heavy for me. (I went back to them after realizing that my Doc Marten’s we’re NOT going to work for me anymore!)

By the time I started teaching, I was already five years into my diagnosis and I had switched to just wearing chuck’s. I have written before how I never wore the same color chuck’s two days in a row and I had a total of 13 pair that I would rotate.

But then I started working out at Barwis Methods. There, they told me that I should no longer wear chucks because they were not supportive. Already being wheelchair-bound, I went back to wearing shelltoes. I switched from white shelltoes to black shell toes because I was wearing them to work.

I saw this video on Facebook this morning and I can’t just put the video here but instead can post the link so you can look at it:

https://www.facebook.com/reel/1885383531850112?fs=e&s=cl

I showed this video to Sean this morning when he came to help me get out of my bed and I told him that I only did not wear socks once with my chucks!

The one time I wore those shoes without socks was when I received a phone call from my realtor back when we were living in our second apartment. He was at , “The Pelham house” and wanted me to come and take a look at it. (That was the house that I am currently living in right now!) Itold him to let me brush my teeth and put my shoes on and then I will be there. That’s what I did.

My current house is about five minutes from my apartment complex. It took me five minutes to get to the house he was at (where I am right now) when I showed up and walked up the walkway, he was shocked!

He told me that women always say that they are going to be right there but they never are! I laughed and I pulled my sweatpant legs up and told him that I wasn’t even wearing socks!

I recounted that story to Sean about not wearing socks and he told me that my shoes are the same size as the one in that video! I’m still trying to get used to these shoes but they are comfortable. It’s just change and I’m not good with that…

I am still trying to process my four-fer day out but I just want to say that I went to get my haircut the day after. Sean drove me and my Mom in his truck. My Mom had to come to sandwich me between her and the door while Sean is driving. He gets me in and out of the car and into my manual wheelchair.

As an aside, I heard this song and it took me back to my youth and my cousin Melissa!:

*** I wrote this post last night because I couldn’t believe that we got so much stuff done! But, I wrote it in present tense because I wanted to post it as if I was posting it today but I got my haircut today and my eyebrows waxed so I am exhausted. Even the excitement of my four-fer does not negate the extreme exhaustion when I leave my house. Here is the post and forgive me for the length. There is a lot of things going on in this post that is going to take me a while to digest and figure out what to do:

Okay, Yesterday started out as a two-fer. While I was sleeping on Monday, my Mom called the doctor and was able to get me an appointment in dermatology. You see, there is no Espace between me and myMom! So, after she made the appointment, she called and reserved a van for us.

I had an appointment scheduled to have techs from Ashley Home Store at my house to adjust my bed. The bed, by the way, is ABSOLUTELY PERFECT! The legs just need to be raised up one level because after I have slept in it for the night, the mattress is somewhat compressed and it’s impossible for my Mom to get me out of my bed and back into my wheelchair.

Sean was here to scoop me up out of my bed in the morning for a few days, and yesterday morning, my brother, Ray, did it.

So, my brother came by in the morning to get me out of bed and then we started getting ready to leave the house. It takes me a moment to wake up and they have to take my vitamins and my protein shake. After we finished a bathroom routine, we were ready to get into the van. My Mom had secured a back loader which is easier for me to get Into alone. I mean that I can more easily maneuver the joystick to guide my chair into the van.

My Mom was in the process of strapping my chair down and then she exited the back and I did not see her but I saw a man wearing black get out of a truck that was in front of my driveway. We had moved the rented van into my neighbor’s driveway so I had more room to get into it.

I sat there with my feet throbbing because I was not wearing shoes because they had sores on them but then I see a second man get out of the truck and go into my house. I figured those two men were the techs who were supposedly canceled but I guess they weren’t because she told them what they needed to do and they added a level to the base of my bed. My mom told me that everything was handled regarding my bed as she pulled out of my neighbors driveway to head to the doctor’s office.

My Mom had made an appointment for dermatology because I have blisters and sores on the sides of my feet. Once my Mom discovered the sores and blisters on my feet, she went into action immediately! We had decided the night before that we were going to drive to the lab at Henry Ford and Dearborn to get my blood drawn because a previous doctor had ordered a bunch of bloodwork for me. That is why it was going to be a, “Two-fer” But now with the tech coming out and adjusting my bed before I even left for my appointment made it a, “Three-for!”

So, this dermatologist, looked at my feet and conferred with another doctor (as he was just a resident) about my care. We talked about my necessity to have my compression socks on all the time. But now, with my new bed, my Mom can take them off at night and the bed allows her to put them on again in the morning.

They took my disability into account and decided to do bloodwork first to make sure my liver can handle the medication they want to put man. Then, they want to manager me and then six weeks do another blood draw. I thought this was okay because we were going to go to the lab down the street to get my other blood work done. But the nurse in the dermatologist clinic told us that we just needed to walk across the hall to get the blood work done.

We walked across the hall and talked with the woman who was going to draw the blood. We asked her if she could also draw the blood from the other doctor and she told us that because they’re hungry for a doctors, she can do all the bloodwork at one time!

We definitely we’re getting things done! So much so that my Mom told me that we can go buy new shoes for me. We were out in West Bloomfield for the dermatologist appointment and the shoe store was in Southgate so we had to book it to make it there by 6 o’clock!

We made it just in time! I was resistant to buy shoes at a running store because I DON’T run! I don’t even walk! But, she bought shoes there that saved her from having a bunion surgery on her foot so I will give it a go. The guy listened to us and brought a few pairs of shoes for us to look at.

The first one was black with navy blue accents and the second pair was light blue. The third pair, however, was dark gray with PURPLE soles!!! Needless to say, that is the pair I bought! Of course!!!

So, this was my exhausting day! Doctors appointment, blood draw (x2), and new shoes! I was so exhausted that I passed out in the car after the doctor visit. When I awoke, when we were close to my house, my Mom asked if we should go or not but I told her that we should go because we we’re so close and we had 40 minutes left to get there and it wasn’t that far.
So this is the explanation of a Four-Fer!

Today was an absolute exhausting day! I will he talk about it tomorrow. It was a ‘four-fer’ and I’ll explain that tomorrow and s well. For now, must rest after my ‘four-fer’ out!

They play this song when I saw them live probably 18 years ago? It was old when they played it and it was a throwback that he wondered who knew. I knew, Pat! Of course, I knew!!!

Who were those kids listening to them sing so long ago?! It’s me and my cousinT, Shannon!:

We went to get my bed on Opening Day. I saw this picture from five years ago in my Facebook memories and I screenshot it to write about it later but you know how it is for me after I leave my house… as it gets further and further away from Opening Day, that picture is irrelevant but not if I talk about baseball!:

I love that picture! Sean keeps telling me that I have turned my back on the Detroit Lions but I told him that I have stayed true to my heart and have followed my man to the Los Angeles Rams. But seriously, I am not so much a baseball fan. In fact, I haven’t really ever been a baseball fan. I have been to a total of two professional baseball games! The first one was in Tiger Stadium and I was pregnant. The second baseball game I went to was just after Comerica Park opened. And it was so sad to learn in its first season that it is completely NOT handicapped accessible! I’m sure that I have written about this event before but I will talk about it again here.

But first let me tell you about my first time going to a baseball game. which I am sure that I have written about this before somewhere in the archives it’s probably in there but that is where my mind is right now. I was newly pregnant and no one knew that I was. Well, I guess a few people. We go to the game and I was so excited to get a corn dog! It was the first time I was at a baseball game, a professional baseball game and I wanted to savor the ambience! I don’t know who they were playing or even who won but I do know that I wanted to buy a box of cracker jacks! If I personally know you, I know you have heard this story, but I was able to buy MYSELF cracker jacks. I didn’t even finish them.

So that was the first time I want to see the Tigers play. So, fast forward a few years and Comerica Park was just built everyone would think that it was so new construction that it would be handicapped accessible but I found out when I went there on my crutches that it was NOT! The guy I went to the game with had front row, left field tickets. I could’ve caught foul balls IF we could’ve gotten down there! I was on crutches then and there was no way for me to get down to our seats. That really bummed me out but I did not cry because my disease had not progressed that far yet. Thinking about it now, it almost makes me want to cry! We didn’t stay for the end of the game, I think we left in the seventh inning because we sat behind Home plate.

So those are my only two experiences going to watch a baseball game. Thanking about it in retrospect, just like this song, “… I don’t care if we ever come back” but then there is the time that the Detroit Tigers made it into the playoffs when Sean was in middle school. I will never forget that day! We were watching the game and the dryer buzzed and I told Sean to grab the clothes out of the dryer and put them on the couch so I can fold them while we watched the game. He was irritated going to get them and told me to tell him what happens. He left just as a batter stepped into the box. when he came back with an armful of clothes and put them on the couch, he asked me what happened and I looked at him straight faced and said, “Nothing. absolutely nothing!” The pitcher hadn’t even pitched anything! It was a short-lived playoff run but that was years ago.

But now, with me and my disease progression, I will NOT attend a live baseball game ever again. But that really doesn’t matter because i’m not such a baseball fan anyway…

I just want to start this blog post off by saying EMPHATICALLY that I can do ANYTHING for three days!!! This is not me saying anything about dealing with having had MS for 21+ years but I think the fact that I can do that, or, I have done that, makes dealing with sleeping in my power chair for three more days before my bed comes a little bit more tolerable.

I was thinking for a long time about how to write this blog post about my sleeping situation last night and I kept thinking that I was going to name it, “A teeter-totter” because that is this song popped into my head and this is exactly what I did last night!:

Let me ‘Splain ya: I originally got my power chair because my knee was injured while I was seated in my manual chair. My meniscus was torn. Because it takes so long for the body to heal after surgery (I had a second knee surgery on the SAME knee) when you have MS, my wheelchair tech suggested that I get a power chair so I can keep my legs elevated and extended at all times. When my knees are bent at 90°, it hurts! I can adjust my wheelchair to have my legs elevated all day long and that helps. But now, let’s think about a body that has had MS for 21+ years…

I can no longer sleep in my bed. It hurts too badly when my Mom, “Yanks me” out of bed. That’s how she explained it to KJ at the furniture store. My NEW bed is arriving on Friday. So last night, I was a teeter totter because I would lay back until my ankles start to hurt and then I would adjust my chair to the sitting position until my knee started hurting. Then I would adjust it back. I think I did that five or six times before I found a spot where it was like Carrie says, “Floating side-by-side.”

I love that song! It reminds me of our second apartment! I was more able-bodied back then and could still drive. I have listened to this song twice as I was gathering the images to post here on my blog. These are the words that made me think of this song and I always love a reason to post songs that I dig!:

Maybe I should listen to this album tonight when I am puzzlin’…

I have been sitting in my chair as I always do every single day but after the needed adjustments, I am baffled by witnessing progress in real time because the last chair I got less than four years ago, It had a different pelvis stabilizer. it’s become normal for me to refer to my seatbelt as that because that is the proper name for it.

I would say probably a little more than a year ago, I think that my Mom was backing my chair out of the bathroom before we began our routine and the pelvis stabilizer got caught up in the wheels. It burned parts of the strap so it really looked ghetto! In Addition to that, another time, the actual clasp of the seatbelt was run over and it broke. Both parts were able to fasten together still so my Mom would tie the end of the seatbelt to the clasp so it worked.

I told my Mom to mention that to the technician this morning. Rick worked on my chair today (I don’t know any of the technicians because I have never been there when my Mom has taken my chair. I think there are a whole lot of them there though, kind of like in the movie The Upside) and he replaced one side of the pelvis stabilizer. No longer is it like a seatbelt in a car. it’s better than the million dollar idea I had for a better pelvis stabilizer. I think it’s crazy that I am witnessing progress in real time and even seeing changes between chairs! Imagine the progress that will be made by the time I get a new chair next July!:

My Mom clasped me in and I just moved The track until it was flat.

Well, the grade average for my weeklong chair sleeping has gone down and that it’s because of last night, I give myself a C-/D+. I said that to my Mom before she was finished getting me uncovered and getting my shoes on. She told me that based on all of the grading this week, this is a fail! I told her that there is NO other choice! Because at this point, there is NOT a choice.

I emailed Diane Thomson from RIM and it was a pretty long email. I reminded her about what Dave told me about sleeping in the chair and that that is where I am now. I explained my grading system to her and she’s pretty fast about responding. I didn’t email her until after the end of the day so hopefully tomorrow, when I wake up, there will be a response in my inbox.

I’ve told my Mom that we need to slow down with decision making regarding my sleeping arrangements because that is a big transition because I have been sleeping in a queen size bed for 20 years and I have not slept in a twin sized bed since I was a freshman in college at WMU. I just need time to get okay with this but then my Mom said to me that, my body might not last the time I am looking for. And that really scared me…

Sean has been telling me for years with a shake of his head and a smirk on his mouth that a.m., “Too much.” Usually, it’s in silly situations and I flash him a broad smile and tell him that, “I I am just enough!” that will get both of us to laugh. I thought about me telling Sean that I was just enough because of the events of this morning. I am not sure if I am enough for this.

Upon waking up this morning, I again had an unacceptable solid ‘C’ sleep. I can’t see a solution to the sleeping arrangement because this is where it has to be at this point. Let me explain this to you all:

I open my eyes and when I feel that it is time for me to get up I will ask/say, “Mom?” And I will either hear her voice or silence. Now that I am sleeping in my chair, it’s her voice most times. She walks in to my room, and she will need to peel my covers off of me. ALL of my covers! This is a slow process because I do have a VERY heavy comforter and my other blanket that I sleep with is large enough to cover a queen size bed with my sheet as well. When she is finished with that, I will lay my head down further in my chair So as she can remove the pillow that my feet rest on. Once she does that, she puts my shoes on. Once they are on, I adjust my chair so I’m leaning all the way forward so my Mom can pull the blanket that I wear around my neck and shoulders off.

NOW, putting my shoes on with my legs extended higher than my head first thing in the morning is difficult for me to handle! Waking up in the morning is a VERY slow process for me but adjusting my feet and my broken knee is a little bit taxing! And by a little, I mean A LOT!

After she is finished with this, I sit in my chair in a days for a while. Then, it’s time to wash my hands. But here’s the thing, my house was belt in 1951 and in 1951, disabled people did not on their own homes so the doorways are too narrow to allow my powered chair into. For now, handwashing for me is soapy washcloths and rinsing my hands with wet washcloths repeatedly until they feel clean. It’s not ideal but it works for us now.

This morning, as my Mom was putting soap on one of the washcloths, she said, “It’s too much.” I don’t think she was talking to me but I said to her, “I agree, but I don’t see another way right now.”

To keep by self from crying, I thought of me telling Sean that I’m just enough but I don’t think that applies in this situation if I’m being honest with myself…