Month: January 2020

Sometimes…

I have had MS for 19 years now. Over half of my life. I never liked when people in my various MS support groups would call themselves, “Warriors” and would tell all of us that we were,”Warriors” too. that is until it got real for me.

Damn right, I am a warrior! This is so difficult! I was asked once what hurts and I told them, “Just my nerves.” I paused a moment and let the person know that there are nerves in every inch of your body. Everything hurts. All of the time!

A woman in one of my MS groups shared this song and she said the lyrics spoke to her. Well, they speak to me too! When she posted it, she let everyone know that she was NOT suicidal but this song is real! I am NOT suicidal either and I know that I have too much to live for to do something like that but it’s enough to acknowledge just the fact that this is difficult and I need to acknowledge the feeling that to just, “Let go” Is really appealing at times.

My support groups come alive at night and I completely get that. I think it was a little after 1 AM when I shared this song on Facebook because I did not want to forget it. I listened to it two times last night and cried both times. I let my Mom hear it this morning when I was eating my eggs and I cried again.

My Mom didn’t like this song and I tried explaining it to her but she told me that neither my Dad nor my aunt Rita gave up, not even at the very end. I told my Mom that it is different because they both had. terminal illnesses. My aunt died of ovarian cancer and my Dad was a non-compliant diabetic for most of my life who had two open-heart surgeries and was on dialysis for 3 1/2 years.

I am just going to have MS for the rest of my life and have to and will have to continue dealing with whatever it decides to throw at me. Believe me, now, it’s throwing a lot at me! I tried to get my Mom to see this but she didn’t so I decided to just listen to this song when I am by myself. I will probably listen to it as I am trying to fall asleep at night but this is really difficult and having to be on high alert every second of the day is a lot. For me, this song was really good. I know I’m not going to do a thing deliberately but I needed to hear this song because sometimes…

ALMOST Forgotten Tune #82

I will say that there is nothing like watching a throwback movie with Sean. We are watching, Jumanji. We just saw the third Jumanji at the movies on Christmas and we laughed at how NOT state of the art this one is but it’s still a solid movie!

The Peloton commercial very cute saying really got to me:

I think it’s crazy that songs from my youth, my high school years, are selling things now. I really dig this song and I forgot how much I dug it until I saw this commercial:

I’m Just Sayin’…

I haven’t been tweeting anyone at the breakfast table for a while. I am watching but seem to be too tired to tweet. That changed today because Nate mistakenly called Peter, “‘Toya” when they were having a discussion. Toya is Nate’s wife. Kyle and Kay laughed hysterically and Peter called Nate, “Erica” at the end of the segment. I had to tweet both of them this;

They didn’t like it this time but I liked it enough for all of us! Hearing Nate call Peter his wife’s name, reminds me of the first time I was called, “Mom” by a student. She was insanely embarrassed and I deflected her embarrassment by telling her that I have ALEAYS wanted a daughter but I didn’t want one when I was 12 years old because it was my first year teaching and I was only 24. She was 12. Nate recovered nicely because he wasn’t even embarrassed! I love that show!!! I can’t wait for the off-season because I’m having a little difficulty getting into the playoffs because the Saints are already out. That really bums me out and I wanted to see them win the Super Bowl! Kay rapped about them and I tweeted her and she liked it immediately. I’m just sayin’…

ALMOST Forgotten Tune #81 + Random Songs in My YouTube Feed #33

When I woke up Friday morning, I texted my Mom that I was awake and while I waited for her to come and help me get out of bed, I watched some YouTube videos. This one showed up and I really dug the song! It reminded me of being a little girl and my Parent’s living room having green carpet. It’s hardwood now but when I was a kid, I used to lay on it and watch TV.

I watch video clips of The Voice in the middle of the night when I can’t sleep (Which is pretty much every night). I post the videos that make me cry because I can no longer sing like the videos I see. So, Friday morning I posted this guys rendition of Terence Trent D’Arby and Saturday morning this video showed up and I shared it on Facebook as well!

This song took me way back and I tagged two of my brothers when I posted The second video on Facebook of the actual video. It was proof that Big Brother is watching and listening through our phones I guess

“That’s Enough!”

I was very pleased with the outcome of Saturday’s football games for wildcard weekend this year. I was hopeful that the 1 o’clock game would end with my team winning and I hadn’t really decided who I wanted to win the second game. I was OK if it was either the Seahawks or the Eagles.

But then, the Saints lost. And really upset me! I told Larry Foote In the summer of 2013 that I was a post-season Packers fan. Sean and I both have Cheeseheads that we would only wear during the post-season. But I’m not so sure that I am a post-season Packers fan anymore. I am a post-season Saints fan. I guess that is fitting given that I am a regular season Lions fan so I understand disappointment.

Well, I am super disappointed now because the Saints are out of the playoffs again. It reminds me of working with the Adam at Barwis. this had to be six years ago but there was a man who played in the CFL and was looking to get into the NFL, that’s why he was working out at Barwis. Adam was stretching me on the white table and the man was sitting on the turf not too far away and stretching after his work out. Adam asked him which NFL team he would want to play and if he had the choice.

Adam is a big Eagles fan and back then he was a Rex Ryan fan so he wanted the guy to play for them. I can still remember seeing the guy sitting on the turf and choosing the New Orleans Saints. I wasn’t listening to their discussion about reasons to play for the Saints but once it was over, I remember saying and kind of singing, “Because their uniforms are SWEEET!!!” I remember it amusing both of them and they agreed that the Saints uniforms are sweet because they are!

As Sean and I watched the Seahawks versus the Eagles, Eve’s song played as they were coming back from commercial. Sean was laying on the couch behind me and I had my left hand up and was bopping my head to the music. That song used to be my jam! Third album came out during my senior year of high school.

As I moved my hand completely with the music, Sean told me,”That’s enough!” I started to laugh and just be for the game restarted, I told him Sandra bullocks line in Hope Floats. I told him, “Once upon a time, your mama knew what it meant to shine!”

i’m not sure who I will root for in the playoffs (If any) because I wanted the Saints to go all the way and win the Super Bowl. I don’t know which team I will join the bandwagon for just yet.

533rd

Yesterday marked 532 days that I have been in my motorized wheelchair. I just re-posteded on Facebook the post I wrote and published the day I received it. Since I have had the chair, two different techs have come to my house to tighten it for a total of three times. I have been texting my last tech to come over and tighten my chair because it was getting pretty bad. It felt dilapidated. The arms were sagging and the control panel joystick kept falling over and the headrest needed adjusting. It still worked but was uncomfortable to control. The leg rests were pressing into and hurting my calves.

Because the tech was not answering my texts and probably because my insurance changed, I needed to call Binson’s, the place I got my chair. my Mom did the talking because my speech was not good enough to talk to them myself. Now, get a load of what needed to happen to get my wheelchair serviced: absolutely blew my mind!

The first thing I needed to do was to call my neurologist and get a prescription to get my chair evaluated. That wasn’t a problem but it would take some time, but okay.

Here is where things get a little bit complex.

So, my neurologist will send over the prescription to Binson’s. Binson’s will send over the request for service to both Medicaid and Medicare to see who would cover what because having MS, I am covered by both.

Once it gets decided who is covering what, I need to take my chair to the place to get evaluated. They will not do any repairs but will just see what the problem is and what parts (if any) they need to order and then that’s it.

Then, there is more paperwork on either Medicaid and Medicare’s parts and then parts needed to be ordered if need be.

After all of that is completed, I would take my chair back to the place that it got evaluated and they would be repaired.

The woman told me (Really, my Mom) that the whole process would take about 10 weeks for my chair to be fixed.

WHAT?! That’s just insane! Not to mention that my chair does not travel by itself. I need to rent a vehicle not once, but twice at 100 bucks a pop.

My Mom went to my cousin Cathy’s house last weekend for lunch with a number of my aunts. My cousin is an engineer and she has been working in Dearborn since this summer. My Mom asked her if she could come and tighten my chair one day after work.

Yesterday, my cousin, Cathy, came over with her tools. It was crazy to watch her mind work because she knew exactly what she needed to do and had the arms tightened, my head rest readjusted, and the leg rests fixed so they did not hurt my calves within 30 minutes.

I had not realized how uncomfortable my chair was until Cathy adjusted everything that needed to be adjusted. She told and showed my Mom what needed to be tightened regularly. She told me that if anything else needs to be adjusted that I should just call her and she will come fix it.

I am so beyond grateful and thankful for and to my cousin, Cathy! She said and visited with my Mom and I for a couple hours before she left.

Today is the 533rd day that I have had my motorized chair. It definitely has limited me because I don’t have a vehicle to move my chair but now that it is properly adjusted; it feels brand new!

“You Stink, Justin Matisse!”

I watched half of Hope Floats last night. I really dig that movie! I have watched it so many times and Sean has not watched it with me. He went to the kitchen to warm some food and it was the scene when Justin Matisse comes to the house And he waits on the porch for Birdie to bring out some iced tea. Instead, Berniece comes out and that was when she told Justin the story about the pet gunk they used to have. so, she said it. “You stink, Justin Matisse.”

just after she said this, Sean called from his room that, “It’s weird to hear that.” I have been telling Sean that line forever. Probably because he was born just a year and a half after the movie came out. I don’t think he has ever heard Berniece say it though. It made me laugh! I know that I will continue to say that to him and now that I hope floats is free and demand, I think I may have you watch that a few times.

January 2020 Faves

I saw that a documentary on Linda Ronstadt what is it going to be on yesterday. I have been taken with her. Her music was kind of in my peripheral growing up but I heard that she was diagnosed with something and has lost her voice. It fascinated me because that is exactly like me but my job was never to sing like her job was.


Then, she talked about her Grammy she one with Aaron Neville.

This one wasn’t on the documentary but it is in my childhood:

I found out that she has Parkinson’s; the same kind that her grandmother had and died from.


I also found out that she released a Spanish album so I looked it up on Apple Music and I downloaded it but I haven’t heard it yet. I want to save that because it reminds me of my Dad.

I watched the documentary again today.

1.1.20 Books I’m Reading

I attempted to read this book in June 2019. This would be after my power outage and I had a real hard time getting into it. I think I was just now recovered from the displacement. This year, I’ve decided to try again! I really want to finish the books I start! However, I saw in an ad that if you read 45 minutes a day you will read books fairly quickly and be completed with a book in a week.

my eyes are bothering me today and I was only able to read for 15 minutes so far today. My eyes need rest but I wanted to start of the year reading!