Month: June 2019

Reading

It had to be about 10 years ago when my brother asked me what I did in my room when I was a kid and I was in there by myself for so long. My answer was simple and I told him, “Reading.” Duh! For my New Year’s resolution this year, that was just it, Reading. I set a goal for a number of books to have read by the end of the year.

I have read every day since January 1st. I saw a commercial when watching a YouTube video that talked about how much reading you need to do in order to average a book a week. My goal has been to do that much reading each day but my eyes have a different idea though.

I think it really stinks that I spent my lifetime being an avid reader, became an English teacher, taught and became the Reading Specialist after getting my masters degree and now, my eyes shake so I can’t focus on reading because of MS.

I’m not sure if it’s the heat, the humidity, the change in my routine (the MSU orientation), the fact that my knee popped out this morning, or a combination of all of them but my eyes are shaking and my speech is slurred. I just haven’t felt up to reading since Thursday. I can’t do audio books because I fall asleep while listening to them.

My eyes shaking and my speech being slurred are new developments but I am pretty sure that my knee pain has everything to do it! Hopefully Monday, my eyes will relax and I will be able to go back to reading. I would also like it if my speech stopped being slurred!

Paperwork = Completed.

Well, my friend came over today to complete the paperwork I needed to be completed. Not only did she complete the reading I needed done but she also came over bearing Tropical Smoothies for both of us! We sat and talked while we finished the smoothies before the paperwork was completed. She even mailed it out for me!

That was such a relief! As she left, she talked about the extreme heat outside. So I obviously, I am holed up in my house with the air. I am not feeling well because it’s brutal to start off the day with your knee, “Popping out!” I can’t believe this is still happening but it always gives a hollow crack when it pops back into place!

I recently commented on a post and one of my MS support groups. I was completely shot down and told that knees do not, “Pop out!” Well, how do I explain what happens to my knee almost 3 years after surgery?! It’s a newer support group I joined on Facebook but I hesitate to comment on any posts there now.

But I don’t know if it’s the heat or my body in pain that is causing my speech to slow but it is! I just seem to be napping a lot today but they are not really restful naps. That’s frustrating! Good thing my smoothie was delicious! AND the paperwork is completed!

Purple, purple, purple!

I’ve written more than a few times before about the fact that I no longer possess the dexterity or muscle control to write. It’s another especially cruel part of MS because writing used to be a huge part of my job and my identity. The fact that I can no longer do this, hurts! A whole lot at times!

To deal with this, I use speech to text capabilities on my phone a lot and I have enlisted my Mom’s help to serve as my proxy to write things out for me and I just sign the documents. Today, I needed her to both read some documents to me, (the writing was too small) write some things for me, and mail the documents out.

My Mom does NOT like doing paperwork but she agreed to do it before we started our morning routine. She went into the, “utility drawer” in my kitchen to get a pen. ALL of the pens she found were purple. She got frustrated to discover this and told me that she could NOT fill out the papers that I needed because all of the pens were, “Purple, purple, purple!”

I laughed and told her that it used to be my signature color (whenever I wrote to anything)! She told me that if she tried all five pens in the drawer and they prove to ALL be purple that she would NOT complete the paperwork. Well, ALL of the pens ended up being purple! It WAS my signature color!

I called my friend to come over tomorrow to fill the paperwork out for me and I asked her to bring a black pen because I do not have one! She laughed agreed, and is coming over tomorrow. Hearing my Mom say, “Purple, purple, purple” COMPLETELY reminded me The Na Na Song of by Sheryl Crow! Just Sayin’…

I Am Trying

This morning, I sat by myself in my living room while Sean slept, I finished my Kiefer and my protein shake, and GMFB’s first broadcast just ended. I sat there thinking that I wish that I didn’t have MS. This is really difficult and it hurts! My Facebook page is a bunch of quotes to help me get through the day.

Here are a few examples:

I also share posts that I see from Goelcast. I shared this post a few days ago:

Listening to Robin Williams’ words, I thought of driving with Sean to Barwis. Robin Williams had just died and the DJ talked about him. He told us to call in with our favorite low-key Robin Williams’ movie and tell them the reason why it is.

I was driving little, 12-year-old Sean and I told him to call in to the radio station. As he was on hold, I told him to tell them that, “My mom’s favorite movie is Good Will Hunting.”I told him to tell them that I say that it is my favorite because of the, “Ease with which Robin Williams drops the F bomb!”

They didn’t answer the phone before the end of the song so I just told Sean to hang up. I thought it would be really funny for him to tell them what I said with his little 12-year-old voice.

My Mom told me that I had perseverance today as we completed our routine. I told her that it was difficult but she told me that I just don’t give up. I am trying!

Vastly Different

I had an appointment to get my eyebrows waxed today. The woman who waxes my eyebrows will be on vacation for the first two weeks in July so she won’t be able to wax my eyebrows or cut my hair. Because the temperatures are rising now, my Mom made it a point to buy me a white zippy and thinner black sweatpants.

Once Sean wheeled me outside, I was immediately grateful for the thinner pants but the white zippy took a minute for me to get used to because it was SO bright! He put me into a cooled down a car. He shut the door and disassembled my wheelchair and put it in the trunk.

As I sat there, in the driveway, waiting for my Mom to come out of the house to drive me to my appointment, this song came on:

Hearing this song immediately took me back to seeing them in concert with my cousinT Shannon!

Things were SO different back then! I was not hiding from the heat AND I still could drive back then (even though Shannon drove to the concert). As my Mom got into the car and pulled out of my driveway, I realized how vastly different things were! There’s a good reason that I don’t drive anymore! I thanked her for driving and as we got into the salon, was extremely grateful that I had the zippy on because I was freezing inside! It really frustrates me how vastly different my life is on so many different levels! … Well, at least my eyebrows look good now though!

The Burn Continues OR “You Nawake?”

This morning, my Mom woke me up a little bit after 6 AM. We had our routine started a couple minutes past 7 AM. It was another truncated routine and I had to fight with my body to get it to move so early in the morning! She needed to pick my nephew up by 10 AM. So naturally, the burn continues. The MSU burn.

I missed the first hour of GMFB while we completed our routine and I explained it to my Mom how different it was this morning with me being forced to move so early. I am very happy that there is a second broadcast GMFB right after the first so I watched it until 11.

Sean had left for a work meeting at 9 AM this morning and when he got home, he hard-boiled us some eggs for us. When they were finished, he brought them to the living room. We laughed, or rather HE laughed AT me for being such a, “Weenie” when it came to touching the just boiled eggs. They were really hot! He was finished with his three before I even started to peel my two. I told him that I did not want to eat warm eggs and he peeled them under cool water in the kitchen. He made really good hard boiled eggs!

At this point, it was maybe 10 minutes after 11 and I decided to read my book. He left to go outside to cut the front and back grasses. I had read for a very short time before I turned the light off and leaned my wheelchair back and fell asleep. The only reason I woke up a little after three was because the door bell rang because a package was delivered.

When I opened my eyes, I saw that Sean was also sleeping on the couch. I was reminded of him being very young and when we still lived with my Parents. We used to nap together all the time usually when I got back from class because on days that I worked, I was gone until 6 PM. He had already taken his naps at that point. He took two, one hour long naps until he was about three.

We used to nap together in our room. He would be in his crib and I would sleep in my bed next to him. When he would sitir, I would wake up and ask him if he was, “Nawake?” That is how he used to say it and I thought it was so darn cute! I decided to move into the kitchen to have a protein bar and drink my water. I didn’t want to wake him up!

He began to stir a little bit on the couch and I asked him, “You nawake?” He kind of grunted a little bit and fell back to sleep. I don’t know how long he has slept and I’ve always felt that sleep is good so he is still sleeping and I am trying to get my bearings together.

Right now, I am reminded of my, “Baby Sean.” My Dad would play with him even when it was just after dialysis because Sean would want to play. The time came when my Dad was too tired to play after dialysis ti which he won’t apologize to Sean and explained that he had to sleep. My baby has ALWAYS been wonderful and he would just say, “Okay Gandfadder” and he would climb into bed with my Dad and snuggle up to him and they both would sleep.

I am reminded of those tender moments when we still lived with my Parents before I finished undergrad. The doorbell rang again for another package and thanks to MS, I have no idea what those packages are! I will just have to wait until Sean is, “Nawake” to go retrieve them.

The Grad Party Volume 1

This morning, while watching GMFB, the breakfast table sans Kyle Brant talked about Darius Slay going to a random high schooler‘s graduation party after Will Selva reported it:

Sean was still sleeping but I made sure to tweet them saying that I was excited that Darius Slay went to this random student’s graduation party because my son is graduating next year so it would be really, really cool if he came to you his! I tagged Darius and then I retweeted with the comment that it would be really cool if the breakfast table came! Sean has always told me I am their #1 fan! I tweet at least one of them usually daily. Darius Slay is closer to us though. We live in Deerborn and Sean goes to Divine Child high school it IS the off-season for the breakfast table to come!

Sean reminds me when I begin talking about his graduation party that it is a year away! But, it’s kind of MY graduation party too! I tweeted the breakfast table saying that I’ve had three opportunities for a graduation party but each time, things didn’t work out for me.

The day after my high school graduation, my Dad had his first open heart surgery. Five years later and after I had my son, my Dad was in the hospital on my undergrad commencement. When I graduated with my Master’s degree, my Dad was already dead. My son was eight years old. He was three and my undergraduate graduation and we took this picture:

I plan on re-creating this picture at Sean‘s graduation next year. I’ve begun thinking about Sean’s party: where it will be, what kind of food do y’all have, and all that stuff. Sean just shakes his head when I ask him about it and he tells me, “Whatever [you] want!” Thinking about his upcoming party keeps my mind off of my knee pain and my MS pain.

I’m super excited about this party and I guess it really doesn’t matter if I have any Lions players or anybody from GMFB there! (Although I would LOVE it!!!) I have a big family and I will invite all my former colleagues, the (CCA OG’s) so they can see how, “Little Sean” turned out. Sean is close with the other side of his family but I am super excited for my boy! I hope to send out, “Save the Date” reminders sometime in February or March and have the party sometime in June.

I don’t have anything pressing or anything to pass the time so this will be my focus! I hope it’s really good!!!

A Heavy Burn

My Mom had to accompany my cousin who I call my nephew (who she is the guardian of) to attend orientation for his freshman year of college beginning in the fall. She helps me daily with getting ready for the day. They need to be at the school by around 830 this morning. My eyes opened this morning when I heard my Mom fumbling with the lock on my front door. I checked the time and it was 5:15 AM.

During my working days, I would wake up every weekday at 4:30 AM to begin getting ready for work. It’s been almost 2 years since I stopped working. It’s harder for me to get to sleep now a days so I Fell asleep shortly after 1 o’clock this morning. I have NEVER been a morning person and it was difficult this morning for sure!

Once out of bed, my Mom gave me five minutes to sit in my chair and acclimate myself to being awake. That acclamation usually takes about an hour. We couldn’t afford that this morning so we completed and abridged version of our morning routine so she could leave to take my nephew to be there on time.

It was about 10 after six when she left. My eyes felt heavy and they burned just after putting in my contacts so early! I read for a little while until GMFB Started at 7:00 AM. I really like waking up to them and I love hearing about football! I wanted to stay awake until 10:00 AM when it is over. I ended up dozing off just after 8:40 AM. My eyes were killing me!

I woke up to the sounds of Kay Adams greeting everyone because it was the second broadcast of the show. It’s frustrating to me that I missed the last hour and 20 minutes of the show! Because I was sleeping and with my contacts on, my eyes continued to burn. I turned the TV off and wanted to fall back to sleep but then I got a text message from the company who delivers my monthly medical supplies to my house. I had to answer all of their questions via text because I NEED my medical supplies!

After I answered all of their questions, I realized that falling back to sleep was NOT an option any longer! I am mindlessly scrolling through Facebook for a little while but then I figured I should write a blog post regarding the heavy burn I feel in my eyes!

Underlying all of my discomfort is the fact that my Mom is taking my nephew to MSU to begin school next year! Really?! I know so many people who are alumni of MSU but I got both my Bachelor’s and Master’s degrees from U of M! So I have a heavy burn in my eyes because of MSU?!