Month: June 2021

It Will.

Last night as I was trying to fall asleep, I began to cry as I thought of ANOTHER Father’s Day whiteout my Dad. A friend of mine just recently lost her dad and I thought of her as well as tears streamed down my cheeks. I thought of this song as I began drifting off to sleep:

I remembered driving to work listening to this song on repeat and crying the entire time. I also remember wearing my sunglasses in the dark as I went into the building.

I texted her today to tell her that I was thinking of her and sending her all the love and positive vibes I can. I told her that I cried myself to sleep last night and she said she thought she would do that today. She told me that it was a tough day and said that she is guessing that it will always be.

I thought about what she wrote and the fact that 15 years in, it’s still can feel like it just happened. It didn’t make me feel good to text this but I had to be truthful. I texted two words: It will.

Monopoly

Sean came by this morning just as I was waking up. I heard my mom moving around the house and I called out to her that I was awake. My head was not facing the doorway and then I heard a man’s voice! It totally freaked me out and I whipped my head around and saw that it was my son, Sean! I didn’t recognize his voice because I was just waking up and it did not register.

It was so nice to see him and easier for my Mom and for me because he just picked me up out of my bed and placed me in my wheelchair. My mom went outside to re-plant her mosquito plants and I started talking with Sean. I asked him if he remembered the math packets he used to do in elementary school.. I think he was in third grade when one of the options was to play a game of Monopoly with family members.

He started to laugh and told me that he remembered. I reminded him that I couldn’t figure out why I was so stressed out playing a boardgame with my 8-year-old son! I was recently thinking about a video that I saw on Facebook years ago when I first joined.

I think it was the first video I shared on Facebook and I added a comment to the post. I tagged my brother and Sean and stated that neither of them are invited or welcome to join!

My brother, Ray, is brutal in playing Monopoly! He taught Sean to play the exact same way! That’s why I was stressed out playing with him when he was eight years old! Hey

I think our Monopoly game is somewhere in the basement. I told him that I will have to get a new game when he has kids. He told me that he could teach them how to play! I checked him on that and told him I didn’t want MY grandchildren playing like that!

Smirk

I’m feeling rather, “MS-y” today and it seems like those days are coming in learn more often now. Yesterday, it kind of made me laugh a little more then today but it got a smirk from me, none the less. Yesterday, I washed my hair, or rather, my Mom washed it.

I took off my medium Michigan sweatshirt to reveal a Michigan T-shirt that I had just recently bought After my hair was washed and blow dried, I sat there in another Michigan T-shirt that was clean. This does not happen all of the time but I did yesterday. I needed a sweatshirt because I cannot regulate my body temperature. My Mom walked over with two sweatshirts on hangers. One sweatshirt was the large size Michigan sweatshirt that I just took off and the other one is a maze Michigan sweatshirt that Sean got me a while back. I kind of laughed at it yesterday and chose the yellow one.

My Mom doesn’t really get that I will FOREVER be a Michigan fan (regardless if we win or not). I am conflicted about being a Lions fan that I have been such a big one since 2009 when Sean started playing football. But now my man is traded and many people are gone now too and I don’t know what to do! I’m grateful that I will ALWAYS be a Michigan fan!

#MyGirlL: A MUCH Bigger Deal Than I First Thought!!!

So yesterday, when Leia got home, she was groaning in pain that kind of broke my heart! My Mom went to get her pain medication. Anders when she got back, I realized this was a much bigger deal than I thought it was at first! Her pain medication has Tramadol?! This is a narcotic that my Mom had to sign for! Oh babe, that has to hurt! But I read the side effects last night:

I was on steroids when I was in the hospital before I was first diagnosed and I was an a lot more than she is but I’m bigger than 38.7 pound dog. I also read the side effects of the prednisone:

She is walking slow and doesn’t have the pounds and her step that she normally does. Last night, my Mom took her out to go potty and my Mom has already told me about her ritual after she poops. She barely diid the housekeeping of covering the poop as she scratches the ground. She also normally will twirl around in circles like six times. I think that’s adorable! When my mom came in last night, she told me that she didn’t twirl! We made the appointment for her phase 2 overnight stay that will take place in July. She is not supposed to go on walks for two months. Watching how slow she is now and still remembering how she sounded when she was groaning in pain makes it all make a little more sense

#MyGirlL: Infirmed

Well, Leia just got home. She did not bound m to the house like she normally does, she walked in and laid down. My Mom snapped some pictures:

She saw my Mom taking pictures and looked at the camera:

My Mom left to get her pain medication from Kroger after reading all the information for the steroids that she will be on for a weeks. She is not supposed to go for walks for the next two months. She is just going to go Out to go potty.

She is laying there and groaning. I have never heard heard her like this in the year that we have had her! It kind of breaks my heart!!!

#MyGirlL: “Phase 1”

Early this morning, I swear that I heard Leia’s tail thumping on the wall or the front door. I was so out of it that I just turned over and went back to sleep but when’s my Mom came home. She ate breakfast before she got me out of bed and told me that Leia was it going crazy when Sean came to pick her up this morning! So I did hear her tail something on something!

My Mom went with Sean to drop her off at the vet. Today begins “Phase 1” of her heartworm treatment. She is going to be given a sedative and then an injection to begin to kill the heart worms. She is staying at the vet till about 5 o’clock today so they can observe her.

My Mom took this picture of Leahia as they were getting ready to leave:


It shocked me how grown-up she looks! I updated her profile picture when I ordered food from Chewy today. So now, my Mom left to pick her up but before she does that, she needs to go to the post office to mail a package for me because it almost is my best friend’s birthday!

It was super weird all day to NOT have Leia here and I can’t help but think of this movie as my Mom is going to pick her up. I would watch this movie but it’s more of a fall or winter movie for me to watch. I always thought Renee Zelleweger singing it was funny! I’m not drunk but I am by myself. It feels weird!!!!

Cicadas

If you have known me, you know that I am terrified of cicadas! This terror comes from my brothers throwing their empty shells on my head every single summer when I was growing up! I heard on the news that there was an increased number of them this year and I was grateful that I have not heard them does far!

well, the person who holds the #ChatMSs posted this a while back:

I responded with this GIF: it was


And then he tweeted a video of them shedding their skin;

And the conversation continued with more tweets about them where I responded with this:

I was talking to my Mom about my fear of cicadas because I was terrorized with them every summer when I was growing up! She couldn’t believe what I was saying! She FaceTimed my brother Dave a while later and she asked him about dumping hundreds of them on my head and he just started to laugh and said, ”Yeah we did!” My Mom shook her head and couldn’t believe that I didn’t tell on them. I’m not stupid! I wasn’t going to do that!

Falling Apart

Sleep hasn’t come easy for me for years and I am not a morning person so it only makes sense that I am a night owl. I’m lucky that my best friend is also in a night owl as well and we text often during the night. She and I have had similar schedules for a really long time!

For me, at this point, it seems that having MS for over 20 years now, it’s taking it’s toll on me. It’s difficult to get ahead of the pain now! I was texting with another friend last night and he sent me this:

I responded with:

I fell asleep after texting this but I woke up this morning thinking about it. In essence, I AM falling apart and that scares me. As scared as I am of admitting that I am falling apart, I can’t get this song out of my head! Maroon 5 songs were in my June faves this month in my, “Tunes” tab:

I like this song and remember them performing in when I saw them in concert at DTE energy music theater. This song is not about at at all but I can make it so because these lyrics stick out to me:

As the pain worsens and I can’t get ahead of it.

The speech therapist called me today and left a message for me to call them back. My brother stopped by and hugged me (because we can because we are both vaccinated) and made sure to make fun of my glasses that I seem to be wearing a lot more often now!

This disease progression is scaring me but it’s going to come for me eventually. I also think of this lyric when I think about all of the deterioration of my abilities:

It seems that I have been waiting for 20 years and eventually, I always end up falling. “Falling” in this instance is losing my ability to complete simple tasks.

“This Hurts.”

I can clearly remember telling my Mom a couple of weeks ago as I laid on my stomach on my bed just as I was getting into bed and she tended to my pressure sores because, NEWSFLASH: After 15 years of being in a wheelchair full-time, those things tend to happen. I know that I am beyond blessed to have my Mom to take care of these things for me and the years, we have found that this works the best for me!:

But back to a couple of weeks ago, As I laid there flat on my stomach, and it was a culmination of not being able to find a comfortable position at all in the day and still not being comfortable laying flat in my bed, with my head on my pillow, I turned it to the right and told her, “This hurts.” I didn’t yell it but rather just said it matter-of-factly because I am resigned to understand this now, 20 years in, this hurts. I buried my face in my pillow and shed a few tears.

My Mom responded with a quiet, “I know.” I learned on Friday that my motorized chair was ordered in April 2018. I get a new chair every five years and now, I understand why that is. I constantly move my chair to recline because three years of sitting in it has taken it’s toll on the cushion. I got my haircut on Friday and because my salon is quite small, I transferred to my manual custom chair to get my haircut and eyebrows waxed.

My Mom asked how I was doing and I told her that, “My knee is killing me (even with my Tens unit on) but the seat is really comfortable!” I haven’t used my manual chair much since getting my motorized chair and during the pandemic, I was not getting my hair cut so it got used even less. I had my Mom take this picture because I think that the belt needs to be tightened. In fact, I KNOW this because the pelvis stabilizer is supposed to be snug.

It’s a nice feeling to and learn and notice that I have lost weight but it is really NOT safe to not have a snug pelvis stabilizer (seatbelt). In the early days of being a wheelchair user, I used to have my tech remove the belts but now, with the progression of my disease, I am not comfortable moving my chair AT ALL without it securely fastened!