Category: A Bit Of Randomness

This category is full of randomness that really doesn’t fit nicely into any of the categories having to do with my road to walking.

Doctor #21: My Impressions

Okay, I’ve written before about how I am very familiar with the downtown campus of the Henry Ford Hospital. Both my Mom and I are. I think she’s a little more familiar though! Neither one of us had EVER been to this part of the hospital. It was a culture shock! It was on the 12th floor and the hallways were extremely skinny! That’s not difficult if you are one person walking through the clinic. But I am kind of a lot in my motorized chair with my legs extended.

I made it through all right though. They had me go directly to the x-ray room. I’ve never had x-rays on my feet like this before! Toni, was excellent though! She held my feet as the pictures were taken because it was obvious that I can no longer control my feet. All of this was immediately intimidating because the hallway was so skinny and I cannot control my feet at all! I was ashamed at how pronated they were and it made me sad!

Once I was taken back into a room, we talked with the in-take nurse and I noticed this poster on the wall which is an extremely sad commentary on our part!:

A female doctor came in and asked what was going on with me. She was pleasant with me and had me take my compression socks off (my Mom did that!). That was so strange! Although I was barefoot during my appointment, my feet did not turn purple but they did not feel comfortable either!

Dr. King was extremely young! So was his counterpart! She had her name tag on but I could not read it very well but I saw that her first name was Chrystina with a Y?! I have never seen that before but I liked her because she also graduated from Michigan!

Dr. King has known many people with MS and he said that it is strange how it varies so much! He stated a man that he knew was diagnosed when he (Dr.King) was four years old and the man stopped working when Dr. King was about 35. So, he looks a lot younger than he is! I told him that I thought it would be like that with me but it’s not!

Well, one thing that I really liked about him was that he explained to me what he normally does with Botox and Orthotics and stuff but I explained to him that I’ve only been down that path a while ago. He then, paused and looked at me. He recommended a therapy and rehab place in Grand Rapids:

Grand Rapids is more than just a hop, skip, and then jump from me and as we spoke, he kind of understood that this is where I am. I have explained how if certain therapies were available 15 years ago then I might try them out but I got the impression that he understood that I’ve had MS for a very long time! He didn’t say it to me but he kind of understood that this is how it’s going to be for the rest of my life without saying it to me. I think that I really appreciated that!

Because we were in downtown Detroit, my Mom stopped off at the Tamaleria and I had a fresh and warm tamale! Or, better yet 2 1/2 fresh and warm tamales! They were DELICIOUS!!!

A Difficult Time

There are many things that I am still trying to digest from my speech pathology appointment last Tuesday. But thinking about things that went on that day not related to my appointment, I am having a really difficult time processing those events. I think I will just explain them here and maybe get more clarity as I write this blog post. I hope…

I learned a while ago that I need to schedule when I am going to leave my house. It takes a lot out of me to be, “Out in the world.” it has been a really long time since I have been, “Out in the world” and a few things have reminded me of how inaccessible the world is. I am having a difficult time processing this. Or better yet, I fear that I am no longer equipped to be out in the world…

To better process this, I need to think about when I was out in the world every day. What I am noticing as my disease progresses is that my eyes are really being affected. I thought about it and back when I used to teach, which was a long time ago, I used to teach with just one of my overhead lights on. What I learned after a while is that the fluorescent lights are a little much for my eyes to handle. Being in the classroom all day long, it was easier on my eyes to have just one overhead light on. That worked out because my first two classrooms had two light switches to control the lights. My last classroom, however, only had one but there were so many problems in that classroom with temperature control that I didn’t really think about my eyes hurting because I was freezing!

Anyway, after my appointment with the speech pathologist, because we had rented a van to accommodate my motorized wheelchair, I was going to make another stop while I was, “Out in the world.” I knew that making the day a, “2fer” going to be extremely difficult but I was going to push through! I had finally had money to purchase a new TV because mine is dying and I was also able to get an iPad because my eyesight it’s failing so it’s easier for me to work on an iPad opposed to my phone. Rather than just buying them online, I wanted to have a sales person at Best Buy explain the best option for a TV for me and I wanted to get my iPad programmed.

That whole process took about three hours. It was not until I had difficulty exiting the van on the ramp and then seeing my door opened to get back inside and there were halos around the lights on my chandelier. It all made sense to me after I saw that! After I was able to get back into my house, I immediately took my contacts out and placed my hands over my eyes for probably close to 30 minutes to let my eyes calm down. You see, now, when I go out in public, and pretty much all the time when I’m in my house, I have to wear glasses in addition to my contacts. Let me explain this new development:

When all of this started happening with my eyes probably a little over a year ago, I clearly heard in my head the first doctor who told me I had MS. ”Look, you have MS, you are going to go blind, and then you are going to die.” My Mom and I recounted that story to the last three doctors I have seen this month. None of them can believe that that is how a scared, 18 old girl was told that she had MS. When we told the podiatrist about that, he looked at my Mom and asked, “That wasn’t in this hospital, was it?!” My Mom nodded and said, “The very same one.”So, five years ago, when I still taught, I could just turn off one of the overhead lights well I thought and there were some days where I would teach wearing my sunglasses. My bosses at the time did not mind and they understood because they knew of my MS diagnosis before I started working there.

Yes, there are a whole lot of fluorescent lights on in Best Buy! I cannot wear sunglasses while shopping because I need to wear glasses with a prism over my right eye in addition to wearing my contacts now. So, for the three hours that we were in Best Buy, I just had my glasses and NOT my sunglasses on. When I came home, I realized what was going on with my eyes once I saw halos around the soft lights in my chandelier. I remember when LED lights first came out and they were cheaper do use in your house but they hurt my eyes so I can’t use them.

We made follow-up appointments with the speech pathologist virtual so I can remain in my house to have them and now that I have an iPad, that will be easier. But all of this is difficult for me to process! I told my Mom as she washed my hair that, “My body is shutting down.” She told me that hers is too and that everyone is but I don’t think she understood how hard this is for me! I’m just having a difficult time…

Savage

I got pregnant with my son in April of my freshman year of college and it was four months after my MS diagnosis. I had my son two months early via emergency C-section so I had to withdraw from the classes I was in at the time. I was told to, “Approach the chair” and was able to get all of my tuition money back except for the fees for each class. But because my sophomore year of college only consisted of one semester, I was behind in the credits and so once I went back to school after having Sean, I went full-time until I graduated.

I have recounted this story so many times because, even today, I can’t believe that I did it. Even before I had Sean, while I was pregnant, living with my Parents, I told myself and I set a goal being out of their house and on my own by the time Sean was five and when he was going to start kindergarten. I have written before how I used to pour over the class offering lists all the time in order to maximize the number of classes I took each semester. But, I was working in a deficit even taking 15 credits a semester, it’s so was going to take a while for me to finish. I kept looking over the class offerings and they enjoyed the seven week courses in the summer the best. They were quick and I was able to add to the number of credits I needed to graduate.

I remember, specifically, looking at the course offerings for what would be the summer and I was in between a sophomore and a junior. I looked at all of the classes that were being offered and I crunched some numbers. I figured out that if I took 23 credits that summer of the classes that were being offered, I would have a full schedule in the fall, student teach in the winter, “Walk” (Graduate) in the summer while I had two additional classes to finish but then I could get a job teaching the following fall. it was ahead of schedule but that’s what I was going to do! Now, all I had to do was DO it!

I figured that if I took a full schedule each seven week session, that would put me on track to graduate the following summer. In order to be approved to take that many classes, I had to, “Petition the chair” for permission. In that meeting with them, I laid out the fact that I had a two-year-old at home and was trying to condense my schedule because I was going to teach and if I didn’t take that many classes in the summer, it will delay graduation another semester and I wouldn’t be hired in the middle of a school year so I would be unemployed for entire school year after I graduated. I remember that he looked at my grades and told me that it looks like I can do it and if I want to do it, I was given permission.

it was EXTREMELY difficult but I got it done! Everything worked out precisely and Sean and I were able to be out on our own by the time Sean was three. I took the contract from CCA that said that I was just hired in and was able to get an apartment. When Sean was over yesterday, we were talking about college and somehow I just offhandedly said, “Or, you can take 23 credits in one summer.” I said it as if it was no big deal but it is something that I did. Sean surprised me and he looked directly at me and said, “That’s savage!”

I was completely taken aback by his statement but thinking about it, I guess it kind of was. I told him that I will NEVER do it again and I thought I was going to die! I also told him that I had a goal and I had a child so I HAD to do things in order to get things completed on time. but, even though in retrospect I think that’s crazy, I’m glad that I was able to do it because Sean and I were able to be out on our own when he started preschool. It is an incredible story to think about but I had to do what I had to do! And if that”Savage,” so be it!

A Game

I received a Target order today. When I awakened, I saw the notification on my phone. In this shipment, my seasonal chapstick collection is complete! I figured out the right words to search when looking at target.com for chapstick. It’s under “Burt’s bees gift sets.” So now, I have all the chapsticks I need for the entire year and I will replenish them as needed. I already know that I will need to order more pomegranate flavored Chapstick around March or maybe even February. I use vanilla bean and pomegranate between seasons. If it is cold, I use vanilla bean but if it’s feeling warmer, I use pomegranate. I think it’s silly that I do this but my brother, Jimmy, got me these really cool boxes when we were quarantined for me in the beginning of the pandemic. They had my gum in them and my chapsticks fit in there perfectly! I don’t use the yellow ones because they are peppermint and the red one is peppermint as well but I have been toying with the idea of having chapstick on the table by my bed because just before I fall asleep, sometimes my lips dry out. I’m not sure what I’m going to do with that but I don’t want to waste them!

I gathered all of my chapstick boxes and before I arranged them, I sang James Taylor in my head. That song always reminds me of my cousinT Shannon! From the bottom to the top of the picture, it is, “winter, spring, summer, fall.”:

I was having difficulty trying to find a title for this blog post and I didn’t want to call it, “James Taylor”so I thought about the fact that I am spending so much time thinking about the type of chapstick that I use. I have nothing but time now that I no longer work and MS is raging through me so I can just make that a game because I apply so much chapstick because for whatever reason, my lips get really dry and cracked without applying chapstick very liberally all day long. I’ve told my Mom that my body is shutting down but she really doesn’t like me to say it like that and if I can avoid thinking about that by looking at my chapsticks, so be it.

“Hold Up, Wait a Minute!”

So, I had some difficulty falling to sleep last night so I decided to scroll through target.co, because I had just placed two orders for necessities when I got paid. I decided to scroll through the search history for Burt’s Bees gift sets again. At about 3:30 in the morning, I saw this:


When I saw that, I heard a song in my head from one that I had to be like eight years old. I should have scrolled through more completely when I received my Social Security so I would have added that one to my chapsticks when I got my Christmas and New Year’s chapstick pack. I would have seen this one and I would’ve ordered it!

If you look in this picture, the box that is the second one from the bottom is my Christmas/New Year’s box of chapsticks but remember that I said yesterday that I don’t use the yellow ones because those are peppermint and four Winter flavors I just ordered, the red is peppermint as well. I definitely can find different places for them in order to put the shortbread cookie flavor in. The day after Thanksgiving is reserved for ginger spice and I wear that all the way until the day after Christmas because Ginger spice reminds me of my Abuela because of the candy she always had in her house at Christmas.

But when I saw this flavor of chapstick that would totally fit with my winter and New Year’s flavors, I’m DEFINITELY ordering that when I get my next check! I will probably post a review on it! It was after three in the morning but I was singing this song in my head as I drifted off to sleep. I remember hearing it coming from the basement of my house when I was a child because my older brothers will listen to it:

A Decade OR, “I Love This Toothbrush!

I had posted a few weeks ago about the fact that I bought myself an electric toothbrush. I took it with me to the dentist when I got my teeth cleaned so she could explain it to me. Let me tell you a little bit about my dentist. I know I have written before but it’s easier for me just to give you the, “ Quick and dirty.” I have been going to the same dentist for my entire life and so has Sean. We used to get our teeth cleaned at the same time. Sean’s hygienist’s name was Cher. She used to be mine but I moved over to have my Dad‘s hygienist so Sean and I could get our teeth cleaned at the same time. Cher retired a while ago and Sean got a new one, named Lisa. I continued to have my teeth cleaned by Judy. Judy just retired before the pandemic so I changed over to Kristen. She cleaned my teeth before lockdown and then I didn’t get my teeth cleaned for the first time in my life for a year and a half. Maybe two years.

Now, my Mom and I get to our teeth cleaned just like Sean and I used to do. My Mom makes the appointment when she is getting her teeth cleaned so she has them with Kristen and my appointments are with Lisa but I’m okay with that. I feel so comfortable at that office and I can just remain in my wheelchair to get my teeth cleaned. So when I went there at the end of October, I showed Lisa my new toothbrush and she explained it to me. She turned it on for me and had me feel the running bristles and she told me, very specifically, that I should, “Give it a two week college try!”

Hearing her say that to me made me a little bit nervous that I would not like it. I wanted an electric toothbrush for Christmas back when I was 15 or 16. I think I was 16 and a sophomore in high school. Neither one of my Parents thought I was serious so I did NOT get one but I really wanted one! teeth have always been very important to me!

I just tried this toothbrush yesterday morning. I know it’s a little late but it’s better late than never and I must say that I am excited to tell Lisa because she does not know that I was in college for a decade to get both my bachelors and masters degrees. It’s a piece of cake! Because yesterday morning, I ran my tongue over my teeth just after I brushed and flossed them and I felt like I just gone to the dentist. This morning, when I woke up, I told my Mom that I was excited to brush my teeth!

I have decided that I love this toothbrush! I can’t wait to tell Lisa but I kept saying it to myself and then I started hearing this song in my head. I’m not a huge fan of this song but it is an homage to my serving days at Lonestar. I have two or three chilled glasses in my left hand and two or three cold bottles of beers intertwined in my right fingers and I am walking to my table. Toby Keith reminds me of my Dad so I don’t mind and I have a memory I like to stay visiting for a while because that is some thing I used to do… walk.

My CCA Kids

The first time I saw this commercial, I completely thought of my kids (my CCA students). I couldn’t remember who sang this song but I remember hearing it being played during dodgeball for the gym class. My CCA kids LOVED hot Cheetos!!! I remember that for every single Kleenex raffle I had for 12 years, The students ALWAYS wanted a big bag of hot Cheetos as their prize if they won.

I clearly remember my first year teaching and there was something going on in school and the kids had bags of Cheetos that they were eating for lunch that they had to eat in my room. My Mom had just dropped off a smoothie for me because I was eating completely organic back then and I was hitting it hard! The kids were sitting at their tables and eating their lunch. I was drinking my smoothie. I watched them eat as I sipped the straw of my smoothie and I told them, “I could NEVER eat red food!”

I remember a student who sat toward the back responded with, “But, you will eat purple food?!” The shake I was drinking was purple. I looked down at my shake and started to laugh. A student gave me one hot Cheeto to eat and it was completely DISGUSTING!!! I told the class that I will never eat red food again! Artificially red food! It took a couple times for me to watch this to remember who sang it.

So when I found out it was Fall Out Boy, I had to search for a video and I found one that I will leave here because it reminds me of my kids. My CCA kids:

Topsy-Turvy OR The Changing of the Guard

Events of today were a little bit crazy! I woke up this morning knowing that my Mom was going to make pies for Thanksgiving with my oldest brother. I was most grateful for him to take over for our generation when my Mom‘s generation is gone. I was most appreciative to learn that my house was going to, once again, smell like my mom‘s pies! It is a smell that I Love but never thought that I would smell in my house! with this pandemic persisting, my Mom is still staying with me so our family pie making will commence in my home! I love it!

My Mom got me ready for the day before all of the holiday festivities would begin. I decided to be festive as well! This is me being chronically ill but still festive because I’m excited about the season! Right after I snapped this picture, I put my sweatshirt on. Unfortunately, the life of a chronically ill person consists of sweats. My T-shirt says, “Thanks + Giving.”

What time Sean showed up, since he was here, my mom wanted him to get the tree from the basement. I was concerned about the tree bucks because it is the 16th year that we have had the same box. Sean went downstairs by himself and then I heard it! Sean yelled from the basement that if we have the same tree box next year, he will boycott Christmas!

When he was upstairs, he put the box in the living room and told me that the tree fell out! I started to laugh when I snapped this picture and he told me he will pick a new box for us. I told him that we have a 7 1/2 foot tree and let him do it.

Call Sean thinks that the tree box is dead but he got the Treestand out of the front closet and proceeded to take the tree out of the box! As he started to do that, I told him that things are all topsy-turvy this year and I had to put on the song that will start the Christmas season for me!

I love this song! It completely set me in the mood and I watched and Sean was fluffing the branches. I told him that I am witnessing the, “Changing of the guard.” He only read and talked about my brother making the pies with my Mom but I stopped him and told him that I was witnessing the, “Changing of the guard,” by watching him put the tree up. My Mom has always put the tree up since I have gotten it but now it seems that Sean will do that. I still just sat in my wheelchair to supervise but phase 1 is now complete!

My brother, Ray, will be here soon and then the smells of my Mom’s pies will waft through my house which will make me happy because I AM in a festive mood! I even dressed the part! Before Sean left, my mom had him take the box downstairs. Before he did, he yelled, “Don’t call it a box!” and I immediately thought of LL cool J #JustBecause:

“OUR Music”

It was interesting for me to watch the, ”Changing of the Guard” with Sean putting our Christmas tree up but one thing I really didn’t think about was a, “Changing of the Guard” with the pie making in my family. My Mom has already told me that she is getting tired and I am so sad that I can’t carry on the torch for her!

ENTER: my big brother, Ray. It looks like he will be learning from my Mom how to make her pies.

I learned last year during the holiday pie making that my thermostat has to be set lower because the house gets really warm when the oven is on all day. But, my disease is progressing and therefore, my temperature control is being lost. My house was set at a lower temperature but I couldn’t handle it so I went over to the doorway of my kitchen. I took in a scene that I will never forget for the rest of my life!

My brother put on some music and a song that I had never heard before was playing but I turned the corner to see both my Mom and my brother, with their backs to each other, singing their hearts out because they both knew the song! I started to laugh and I commented that I didn’t know that song. My Mom could NOT believe that I didn’t know it and my brother looked at his playlist and said, in my defense, that it came out 13 years before I was born. When my Mom listens to music, I have to constantly remind her that I was born in 1982! They sat on the couch has the final pies were in the oven and started singing a different song that I didn’t know and my mom told my brother, “She doesn’t know our music!” I laughed at that statement but I do not know, “Their music.”

My brother posted this picture of him and my Mom and I need to explain it. My Mom meant business yesterday and it continues today. My Mom is not used to being picture ready and staging pictures and I explained to her that’s how it goes now. I could feel the tension when I got out of bed yesterday like static or some thing because I knew that my Mom would soon turn into being obsessed! she gets that way when she’s baking a large amount of things! Baking pies for my immediate family is a large amount of things!

#ChronicallyIllAndNotSoFestive…

I woke up this late morning to the smell of my Mom‘s apple pie. Mornings are always difficult for me and as I was trying to wake up I had a big coughing fit. I cough and choke on nothing now. It’s a little bit alarming but I’ve been doing it so long that my Mom knows just to let me, “Choke it out.” Sean would always say, “Hands up” (which is what I always used to tell him when he was young). My Mom told me that today as I choked and Leia got up and out of her warm bed by the heater vent to report for duty see if I was okay!

Seeing this, made both my Mom and me laugh as I finished choking. Choking on nothing takes a lot out of you! I am still sitting in my wheelchair trying to wake up. It seems that MS does not care if it is Thanksgiving! The sides have always been my favorite part of a Thanksgiving meal. But I am a little bit concerned that and during Thanksgiving dinner will be difficult. I’m #ChronicallyIllAndNotSoFestive.

Yesterday, I had a piece of my Mom’s, “Reject” pumpkin pie and I didn’t seem to have a problem with that because I’ve been eating it my whole life! I’m just going to be positive about this and chew very slowly!

🍁Happy Thanksgiving, everyone! 🍁