Month: March 2019

I opened my eyes when it was still dark outside to take my mouthguard off. I wear a mouthguard at night because I am a teeth grinder! Wearing my mouthguard helps me keep from feeling like I’ve been punched in the face! Not that I have ever been punched in the face nor want to be but I imagine that’s what it feels like because it really hurts! I’ve been wearing it for probably 6 or 8 years and I’m too afraid to NOT wear it! I think there may be some weird subconscious reason that I take it out in the middle of the night and awake NOT wearing it in the morning. I usually don’t remember taking it out but last night/ this morning I did because I did NOT hear any rain on my roof or windows!

When I really opened my eyes this morning, I still did NOT hear any rain and got excited! I thought of this song:

As I laid in bed, I wondered why my knee was hurting so excruciatingly! I didn’t find that out until my Mom came over and got me out of bed. I followed her into the kitchen and she grabbed my Kiefer from the fridge. I was extremely groggy but then I saw it. It had snowed last night! Really?! During my birthday month?!

Sean made breakfast again this morning and the eggs were delicious! He went to his friend’s house to watch basketball and I remained holed up in my house. I wasn’t feeling well and it was specifically because of my knee! That was crazy because I did not feel well yesterday, and I think that was because I have MS. But really thinking about it, there is snow outside. That means raised barometric pressure and precipitation in the air = knee NOT feeling well!

I watched a couple of movies on Netflix that my Mom suggested and I really liked them! I started to get tired so I put on the old faithful of the time, Laws of Attraction.

I’m grateful that I have gotten my money’s worth since purchasing it on St. Patrick’s Day. Who doesn’t love a little Ireland?! So, my knee hurts today and there is snow. Additionally, State won! Being a U of M graduate, that’s NOT cool but at least there’s no rain! That Blind Melon song has stayed in my head all day!

I was barely awake when I heard my Mom open the front door to my house. I could hear the rain as I groaned and tried to rollover. Rain has always NOT been a good thing for me, or better yet, it hasn’t been good for me in probably the last 15 years. When she opened the door, a song from my youth popped into my head. Something about the rain and crying. I already did not feel well because my knee threatened to, “pop out” all night! When I heard the rain, it was no wonder that I did not feel well! I had to look that song up because I didn’t know where it came from but I remember being young when I heard it. And all of this blasted rain! I found that song I thought of, it’s about some guy cheating on a girl. It’s not Sunday but is talked about the rain. I did not see the rain, but rather, heard it.

The pain was evident on my face as my Mom helped me out of bed. She asked me where it hurt and my response was a single word. I said, “Everywhere!” She asked me where it hurts the worst and I told her a simple, “my knee.” I thought of one of my Mom’s favorite songs that we have a listened to often as we complete our morning routine. The song I thought of came out when I was five years old:

The Merriam Webster online dictionary cited the second definition of the word menagerie to be, “A varied mixture.“ That is exactly what my pain was! A menagerie of pain! A mixture of MS pain because of the rain and broken knee pain because my knee STILL hurts! The Allure song stayed in my head most of today and not so much the Fleetwood Mac song.

I lit some, “spring smelling” candles to make myself feel better after the rain stopped and thought of my nephew. I texted him a picture because years ago, he’told me that house smelled like candles. It does now! I use PartyLite candles because I am chemically sensitive now. They don’t bother me even with the scent.

I think it’s a bit anti-climactic that I’m not sure that I have so much to say today as I post my 1,000th post. I’ve had my blog since November 2013 and I know my stats aren’t great but they are GREAT for me! With just over 2,700 subscribers and just over 14,000 views, I think that’s a big deal. I know that it really is not in the blogosphere but for me, it is!

I joined Facebook just after I stopped working and just before my knee surgery (which still hurts a whole lot! My knee pops out constantly but it didn’t today yet, but the day is NOT over). I am rarely on Facebook other than to wish my friends a happy birthday but I was on this morning and saw this article. It really bummed me out!

The article was titled: Everclear singer reveals MS diagnosis

Everclear lead singer Art Alexakis has revealed that he has been diagnosed with multiple sclerosis. He shared a letter to fans on the band’s website.

Alexakis co-founded the long running band in 1991, and has been the band’s only constant member. He’s also planning to release and tour his debut solo album ‘Sun Songs’, which is due out in the summer. 

He was diagnosed shortly after a car accident three years ago. Believing that he had a pinched nerve in his neck as a result of the crash, Alexakis underwent a number of tests before a neurologist “told me that I have a form of multiple sclerosis (RRMS), and that I have had it for anywhere between 10 to 20 years”.

He mentions having an image of MS similar to my own images of the disease before my own diagnosis. 

“The words multiple sclerosis conjure up all sorts of images: helplessness, wheelchairs, pain, misery, and worst of all, hopelessness – and pity in the eyes of my family and friends (you get the picture),” Alexakis wrote in his letter. 

It prompted me to listen to some Everclear because my Mom did not know who they were. This song gets me, “in my feels” every single time! I cried this morning when I played this song for my Mom and because I needed to copy the link, I cried again as I wrote this! I haven’t even listened to the whole song today! I KNOW it’s going to be badly!

I post a lot of things on Facebook this month because it is MS Awareness Month and I want to make my friends aware even though I deal with it EVERY month!

Then I saw this post from Montel Williams:

Many of you have wondered if Selma and I have ever connected. We did so this morning, and I have to say how impressed I am by the dignity, the grace and strength with which she is handing the challenges her diagnosis has thrown at her. She has demonstrated incredible courage both by facing these challenges head on and by sharing her journey. Selma is a beautiful soul, an incredible mother to her son and and a powerful advocate for us all. Selma, I am proud to have you as a friend and Tara and I are honored to continue to support you in your journey. Remember that we have #MS – it will never have us unless we let it.

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I think it’s absolutely nuts that so many famous people have been diagnosed with MS too! I feel so far removed from the circumstances of when I started this blog because I am not at Barwis Methods right now but I STILL enjoy posting!

I have always been completely impressed by Kyle Brant’s random 90s references on Good Morning Football! I am pretty groggy in the morning but I could not help but to Tweet at Kyle Brant because he always fits in some random and often obscure 90s reference.

They were discussing the Pittsburgh Steelers, Ben Roethlisberger, Antonio Brown, and Le’Veon Bell. Kyle talked about Antonio being on a new team and the fact that “[He’s] got a man.” Ever since he said that, Positive K’s song popped into my head and it’s been that way all day long! I was 10 when that song came out and I was surprised at how many of the words I still knew after all this time!

At the tail end of that segment, he threw in an N’sync reference of a song that came out when I was 15 which left me in stitches! I Tweeted at him telling him that he is the BEST! (Because he is!)

I pretty much only leave my house about once a month to get my hair cut and my eyebrows waxed. This time, Sean drove me and once we got home, he unloaded me onto the sidewalk and told me that he was going to pull the car up the driveway and asked me if I could wheel myself up to the porch ramp. That had never been a problem before so I said that I do that.

I should have been concerned when I could not push myself over the uneven sidewalk square in front of my neighbor’s house. Sean nudged me over the ledge as he closed the passenger side door and pulled the car up the driveway. I turned my wheelchair around and pushed myself to right in front of the walkway up to my front door.

By this time, Sean had pulled the car up, gotten out of the car, walked toward the porch, and stood next to the ramp up to the porch of our house. I turned my chair to position myself to push myself up the walkway. There is a slight incline so I would need to use a little more force to propel myself up. Sean stood at the ramp and told me he would push me up the ramp but I would have to get there on my own.

I took a deep breath, lunged forward, and pushed. I felt my arms and my chest burn and I felt my face flush and I went NOWHERE. I sat up straight, took another deep breath and decided to try again. I lunged forward and again, I went NOWHERE. ABSOLUTELY NOWHERE! By this time, Sean was cheering me on telling me to, “C’mon mom!”

On my third try, I STILL went NOWHERE! Sean saw the look of defeat on my face and he told me he would come get me and walked toward me. To keep me from crying, he told me that it was really good that I went to fatigue and patted my shoulder and pushed me up both ramps on my porch and through my front door, I thought of a blog post I wrote years ago about Jon telling me, “Way to go to fatigue!”

I didn’t, “Go to fatigue” though! I didn’t go ANYWHERE! The fact that I could no longer push myself up the walkway to my house made me miss Barwis so badly! So badly that it hurt! It has been two years, five months, and five days since I have been to Barwis because after my injury, Dr. Frush told me not to go back there until my knee did not hurt. It still hurts! And it will be two years since my surgery on May 1st.

Because my knee has been hurting so badly since my injury and even after surgery, I was put in a motorized chair so I can sit with my legs elevated, almost entirely straight out all the time. The chair helps with my knee pain but I did not want to be in a motorized chair for fear of losing my upper body strength. It’s been nine months since I’ve been in a motorized chair and it seems as if my upper body strength is gone because I couldn’t even push myself up the walkway to my house.

This fact is very difficult to deal with and it makes me quite sad! When Sean got me into our house and he was helped me take my coat off, I thought of that Jewel song that came out when I was in seventh grade because I DO miss Barwis so badly!

I was alone in my house and just after Michigan made it into the Sweet 16. I turned off my TV and read. I really dig that book! Once my eyes got tired and the, “Leopard print” changed from yellow to dark green, I stopped.

Commercials were playing as I turned the TV on and hit the, “Last” button to continue watching my movie. Laws of Attraction, (this is the seventh time I have watched it since purchasing it on St. Patrick’s Day so it is only $1.86 each time I have watched it so far!) Pierce Brosnon and Julianne Moore are going to fly to Ireland shortly!

But as I was scrolling, the commercials still played and then a Spotify commercial began and I exited my scanning to see the Spotify commercial that played this song:

Before I could turn my movie on, I HAD to watch the ENTIRE commercial! I was immediately taken back to my cousin Alex’s quinceañera. My brother, Jimmy, was going to play the guitar at the reception and his friend, Luis, was going to play the drums. He called me just after I had gotten home from class and told me that they had decided on a song to play and since a girl sings it, I had to sing. He wanted me to come over and practice. I think the wuince was in less than a week.

I remember that I had a killer dress on at that quinceañera. Sean, who might’ve been 2 at the time, had accompanied me to find and buy it. He told me that, I, “Looked very pretty!” which was part of the reason that I bought it. I was still walking without Canadian crutches back then and I remember holding the microphone stand to strady myself as I sang.

I know that I was in my young 20s then but to hear that song on that commercial immediately brought back so many fond memories of that day and for so many different reasons! I was young, still could carry a tune, had a great dress on, and was still walking all by myselfy!

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I first saw this movie a couple times in the beginning of December 2013. It was free OnDemand. It’s OnDemand again but it’s on HBO OnDemand so there is a lot more nudity than when I first saw it! It still makes me cry though!

Despite all of the nudity, I still cry and it is when I begin to hear this song:

Now, I have heard in many circles that Hollywood movies tend to glamorize chronic illness and this one does that for sure but when I hear the beginning bars of that tune, the scene that is showing is something that makes me cry!

So yes, I would say that this is a glamorization of chronic illness because it does not show how horrible and humiliating illness can be but it definitely hints at it and because I am dealing with chronic illness, it resonates with me and makes me cry. I’d still recommend it but know that there is a lot of swearing and nudity.