Category: Books and NOT COOL Stuff

So, it was early in the morning and the parking lot was nearly empty so finding a parking spot was not a problem.  I was with my son and I get out of the car and turn around to go into this particular place and I am stopped.  Dead.  I see this:

Now, I remember way back from driver’s training that the yellow diagonal lines mean that it is a pedestrian cross walk.  So you are NOT supposed to block it.  Now, it was pretty empty but it cross walk is painted yellow because it signifies a ramp.  Wheelchairs need to use the ramp.  Luckily, my son was with me so he could push me up the curb but even the rounded curbs are difficult to get over if you’re in a manual wheelchair.  I tweeted this picture because #DPM2 (Disabled People Matter Too)!!!

 

Public restrooms are ALWAYS a tricky situation for me and here is evidence as to why.  I KNOW I am NOT the MOST disabled person but builders/contractors/whomever is responsible for building them need to consider disabled people MORE!  It is NOT that we are MORE important, it’s just that proper consideration needs to be taken for a person who does not have full control of their body and needs to use a public restroom.  I saw these few things at a public restroom I needed to use and I just HAD to take these pictures.

Just a few questions that need to be asked and/or considerations made because Disabled People Matter Too!!! (#DPM2):

The first thing I noticed about this restroom is the placement of the toilet paper dispenser.  In order to actually get some toilet paper, I need to bend pretty far down.  I used to have really long hair and bending over, my hair used to brush the floor… of a public restroom!  GROSS!!!

The next thing  I noticed was the placement of the emergency button.  If I’m on the floor because I have fallen, how am I going to reach that?!

One thing I DID appreciate was the vertical transfer bar.  Many public restrooms do NOT have one of these but these bars offer SO MUCH needed assistance.  The problem here is that it is too far away from the toilet.  I am only 5’0 and have the arms of a person who is 5’0 tall.  The vertical transfer bar was too far away for me to reach.  Perhaps there should be 2 bars right next to each other?  1 for tall people and 1 for short people.

Lastly, the paper towel dispenser was too high.  It was higher than my head as I am sitting.  To raise my arms up with wet hands allows for water to run down my arms to my armpits.  MOST uncomfortable!  #DPM2!!!

So I hear about books on TV or reading magazines, are usually go on Amazon and buy them. I’m sorry I haven’t updated my book reading  in a while but here are the books I read last school year:

I LOVE him and I loved this book!

I’m not sure what made me get this book but I really dug it!  My last name is in it!

This book!, LOVE, LOVE, LOVED  it! This is a book that I read wow my students were reading and I cried. When my eyes started to well up, I would stop reading. My students would ask me if I was OK and I would tell them that you know it’s good riding when your emotions get involved!

I trained while Chris was training at Barwis and I met him and his wife ( fiancé at the time)

I heard about his book and Twitter or Good Morning, America and I asked him about it when I saw him at Barwis Methods.   He had copies available in his van and he signed one for me!

I currently am having renovations done at my home. They are long overdue but they will make my house more handicapped accessible. Now that I am in a wheelchair pretty much all of the time, I could no longer ignore the needs I have.  “Making do” with what I have no longer suffices  even though I wish it did; I wish I could force myself to get things done but… I need help now.  The man doing the work is more of a perfectionist than I am. I didn’t think that was possible! But it is. I have found him.

He has excellent vision and pays attention to detail. That being said, my house is so stinky right now! Being chemically sensitive, I can’t even take some people’s perfume or cologne let alone stain and polyurethane. So, Sean and I had to vacate.   We stayed at a nearby hotel during the power outage  where the beds were absolutely the most comfortable thing I have ever slept in and the continental breakfast was superb! The eggs were delicious!  There was no question that we would stay there again during this time of the “stinky house.”

This is where the NOT COOL stuff #13 occurs.  ADA law covers a lot of Americans  and my mom knows to ask for specifics regarding amenities needed for me. She called to make the reservations because she is a member at the hotel I wanted to reserve my room. She was very specific amenities needed. It seemed like it would be a seamless  reservation.

Enter the first seam:  The room that was reserved for me was an ADA room; however, it was not for a physically disabled person but rather a hearing impaired person. The room did not work for me and my needs. So, back to the front desk #1.   As it turns out, there were no handicapped accessible rooms available at that hotel but there was a semi-nearby hotel  in the same chain where we could stay. So, we got into the car and drove to the other hotel. We get into the room and check out all of the needed accommodations.  We find out, this room will not suffice.  Back to the front desk #2.

 Now, in this instance, it is not me being “high maintenance” NOT that I’m NOT “high maintenance” but I prefer to say I am “high standards.”  Sean will be the first to  laugh and say that I am “high maintenance” but in this situation, I cannot physically navigate through  this particular room to be comfortable.  So we get a third room. It was kind of like a game of “Hot and Cold.” We were getting “warmer”  but not quite. To save me from trip to the front desk #3.   My mom handled the transaction over the phone in the room and dropped me off at the new room before going down to the front desk.

While in the hallway waiting for her to come back, I stared at this and was excited that this room could really work out (notice the second peep hole in the door, for someone in a wheelchair):

 It wasn’t until getting ready this morning, I realized  that the bathroom is just not working out for a physically disabled person. My mom came by this morning and became my “spotter” to assist me but things just weren’t  working out, it wasn’t because of a lack of effort. We had a will, but just couldn’t find away. We get on the phone with the original hotel. Turns out, they have the room  I need available for tonight because my house is still really stinky! So now it is back to the original hotel for tonight’s stay.

 What really is NOT COOL about this whole  ordeal is that each time we came across an obstacle or barrier or whatever you want to call it, I could feel tears  beginning to sting mt eyes and with each new room, I couldn’t believe how inaccessible it was even though it says that it is. My Mom, being my Mom,  took the reins on this whole thing for a room for Sean and I because she  could see my stress level rising and my body’s response to that stress which is just to shut down.   The beds are really comfortable and Sean really likes the continental breakfast  but disabled people matter too!  And, man, MS sucks! Oh, AND my knee is still broken!

Sean bought me a book today.  I saw a post about this guy on Facebook. I’ve started reading it and I really dig it!   This works out because I am still laid up in the recliner with my feet up and knee iced.

I feel like it is taken me so much longer to read this book than previous books  that I have posted here. When I was young, I used to read a Babysitters Club book in one day during the summer. That is no longer the case. . This fact is because I have to limit my reading.

I mostly read in the morning when my eyesight is at its best. I’ve also learned that it is very difficult for me to read italics now.   I enjoyed reading this book and found myself frustrated when I would have to stop reading because I was having difficulty seeing the words or I was getting a headache from  all of the focusing.   I was determined to finish the book today so I tried my hardest!

I saw a post about John O’Leary with a clip of his story and information about his book  on Facebook and it interested me. I told my son about it. The next day, Sean went to the bookstore and bought the book.   This book was the first book he bought for me.   When he was small, that was a “treat” for us to go to the bookstore because he knows my love of reading and I think I imparted that love to him before cell phones, social media,  and high school (for him).

This book was a good one! I cried and have taken some really good information from it that hopefully I will apply to my life.   This one is worth a read!

 

I had another post op appointment with Dr. Frush today.  My mom and I stopped for some lunch before my scheduled ATI appointment. (I will write about that later).   It was a really good lunch and I went to wash my hands after I used the restroom. This is what I saw:

This was a little bit frustrating! So I sat up taller and this is what I saw:

   

So, this is REALLY not cool! I would like to look at myself in the mirror too! It’s, “things you don’t think about until you HAVE to think about them!” I guess that yellow warning sticker was so much MORE important than disabled people being able to look at themselves in the mirror! Huh?!

I’m  in a funk right now!  I remembered this book yesterday and I remember it being a cute story. I read it a long time ago when I was like 13 because my mom had read it. So I asked her about it yesterday and she brought  me the book. Hopefully this will raise my spirits!

Well, I was correct! This book COMPLETELY  lifted my spirits!   It frustrates me that it takes me longer to read now, I think it’s an MS thing, but I was so wrapped up in the story that I read until the early morning hours using the light on my phone  and woke up and started to read immediately!  I wasn’t even watching TV  because  I was reading the book!

It bothers me a little bit that I cannot read anything without editing it!   And I did this with this book but got  so lost in the story that I didn’t even mind that there were minor errors.  I’m sorry that the book is over but now I know where the really cute parts are so maybe I will just re-read those because they are so cute or maybe I’ll just re-read the book! Again!

Now that I am feeling better, maybe I will catch up on my blog posts!

I recently have noticed something about my T-shirts. I thought  this happened because they were too formfitting; but in talking with Sean today, I had a revelation.   Lately, I have noticed that the armpits of my shirts get holes in them like this:

I thought to wear baggier shirts to cut down on the wear.   Sean got me this long sleeved shirt for my birthday this past year but I didn’t wear it very often because summer came pretty quickly and stayed so long. I just pulled it out and started wearing it in the past few weeks.  How on earth could it be worn out with such few times I wore it?!

I thought maybe it was my deodorant or something and today, Sean told me I can’t wear any of his shirts if I’m wearing shirts out like that. I told him that I didn’t know why this was happening but  I’ve just noticed that it has happened to a few shirts of mine.   I told him that I may have toxic underarm sweat  or something but I wasn’t sure.

He walked from his room as I was sitting in the living room  and he asked me what I have been doing. I must be doing something to wear them out. At the same time, we started moving our arms in the same motion. I put my hands on my wheels and started  moving them as if I was pushing forward as he did the same  standing in front of me.

That’s it!  I am wearing the armpits out  of my shirts because I am pushing myself in my wheelchair! We started to laugh at the same time and I told him it was another NOT COOL thing that happens because I am in a wheelchair. I told him that I needed to wear shirts with reinforced underarms and he told me that he wasn’t sure they existed.  I never thought about life in a wheelchair until I started living life in a wheelchair! There are so many things that are not even thought about  by most people and here is my NOT COOL stuff #14.   Right about now, I wish I knew how to sew.   Just don’t don’t judge me if you see me with holy armpits!  😂😂😂