Category: A Bit Of Randomness

I had to set my Mom straight this morning just as I had to set Adam (Phil) and Michael straight at Barwis.

Sean seems to think and has told me that I am, “Hugh maintenance.” I have constantly corrected him by saying that I am NOT “High maintenance”, I am just “High standards!” Now, I will admit that I am pretty particular about things but I don’t even wear make up!

Sean and I have had discussions about whether it is an MS thing or if that’s just how I am. I think that MS may intensify things but, I think that’s just the way I am. It’s extremely difficult when you have to depend on other people to do things that you used to be able to do by yourself and you no longer are able.

So it HAS to be correct! DUH?!

Phil was the first person to call me this when I said something about the arrangement of some kind of gym equipment or something. I can’t even remember what it was but I wanted something arranged in a particular way and before he started to rearrange it, he said, “Okay, Princess.” I laughed really loudly and then told him that I am NOT a princess! I was already in my 30s by then and I told him, “I am a Queen.” He laughed at that.

I don’t remember what me and Michael were talking about at Barwis but it was years later and he too said, “Okay Princess!” I’m not even sure if I laughed when he did that because I was in my mid 30s at that point but I had no qualms in letting him know that, “I am a Queen!”

So today, during our morning routine, I told my Mom that I wanted something done a certain way to which she replied, “Okay, Princess!” Even though I am now in my late 30s, I laughed because I thought of both Phil and Michael calling me a “Princess.” I KNOW that I am DEFINITELY a Queen now but it does make me take pause at the fact that three different people called me that at three different times in my life. But I guess that doesn’t matter because, I AM a Queen!… at least, that is what I tell myself!

So, I lost power last evening. Sean was at work and my Mom was at a graduation party. I was in the middle of watching Labyrinth for the third time in three days. The TV went out and it was a brown out and then a couple minutes later, the air went out so I called my Mom. She was at my house within a half hour.

She got me ready to leave my house and packed an overnight bag for me and for Sean. I was about 9 o’clock when we started calling hotels to get a room. We called to a total of 15 hotels in order to get a room that were all completely booked! The room we ended up getting last night was in Troy and was NOT handicapped accessible.

After so many phone calls and sitting in the car for so long, we took the room. We waited for Sean at his work parking lot which was next to what used to be Lonestar (Where I worked The summer after high school). We ended up checking in a little bit after 1 AM. Because it was so late and we were so far from home, my Mom stayed over with us. Sean told me once that even if a place was NOT handicapped accessible, my Mom and he would get me there if I wanted!

Well, I wanted to do it yesterday because I needed the air conditioning. It was necessary for me to survive the night with this heat! They both came through with shining colors!

At 2 o’clock in the morning, my Mom booked a room at a different hotel, one by my house. She used my card. So much for savings! The receptionist recommended that we book it then. She told us the rooms were going fast so here I sit, in a NOT accessible room again.

We checked in and all three of us fell asleep because we were so tired from last night! Because we were so far from home, the other patrons at the hotel did not look like they were displaced because of power outages but we sure did! The bacon was really good at the continental breakfast! I told the hostess and she said that they always get compliments on the bacon!

Eating breakfast at the buffet, I realized how bad it looks when you are on a carb free diet. My Mom brought me a plate piled with only eggs and bacon. I DID have a cheese danish though! Hey man, it’s tough being displaced from your house in a hotel that is NOT accessible!

Still no power at my house. I currently am looking for the next venue on our tour of hotels. When is says accessible. Sometimes, (most of the time) not so much… it’s all a bit frustrating! I will post an update later or tomorrow because my phone needs to charge.

Today is day four without power. It’s been just so awful trying to find a hotel that is handicapped accessible, because they really aren’t even when they claim to be. It really frustrates me that this is not an easy thing to find in 2019. I am tired of NOT being in my house. This really stinks! Maybe it’s just because I am so tired of being displeased that I feel like I’m not included in society right about now…

The power in my house is not scheduled to go on until Thursday night as a 11:30 PM. What I have learned in this whole ordeal is that hotels are NOT designed to accommodate disabled people. It kind of really stinks to be affected by this design flaw. Sean told me today that the fourth hotel we have stayed in is the least inaccessible even when it says that it is completely accessible.

I miss sleeping in my own bed where things that are comfortable and completely accessible to and for me. It looks like I will have to sleep in this hotel bed again tonight. I wish I could just treat this as a vacation stay and I would be carefree like when I was a kid but this loss of power is A LOT more difficult when you are disabled!

We ended up spending a total of four nights and four days away from my house because we had no power. I was able to come back home very late last night. I learned so many things during this last power outage which I would like to post here but it did a number on my body and my mind.

So, for right now, I am trying to recover. Hopefully, I will be able to do so tomorrow given my bruises and my abrasions acquired because hotels are NOT accessible even though they say they are. I am reclining in my chair and fighting to stay awake. I’m not sure how long this recovery process will be but I will have to see…

I remember reading in a magazine in high school that it takes twice as long as it lasted to get over a relationship once the relationship has ended. I only thought of that because I think it’s going to take me a little while longer than eight days to recover from the hotel stays that I was forced into.

Yesterday was my first full day home. I couldn’t do much of anything yesterday because I was so exhausted. Today, I kind of can see a little clearer. I’ve started back into my normal routines that I have fallen into since I stopped working. My time away from my house when there was no power did a number on me!

We were displaced for a total of four nights and four days. We went to a total of four hotels trying to find one adequate handicapped accessible room. Of the four hotels we went to, NONE of them were completely handicapped assessable. The last one, got a grade of what I am thinking is a C+. The three previous hotels however, they were an F-.

I didn’t realize they were so bad until we were already checked in. The only saving grace was having my, “2 Sacreds” with me! Sean had told me a while ago that wherever I wanted to be, even if it wasn’t handicapped accessible, he and my Mom would get me there. Well, he was 100% correct! They helped me out so much that I can’t even begin to figure out how to thank them!

Even with all of their help, I still have bruises on my backside because sitting in my manual chair for so long is no comparison to my motorized chair that had to remain in my house because I have no way of transporting it. I also have scrapes on both of my elbows because I tried to make do with a bathroom that was not fully accessible.

Despite my scrapes and bruises though, the hardest thing for me to accept is the knowledge of knowing how inaccessible hotel rooms are (Even when they claim to be) and it’s 2019. Sean asked as we got to our third hotel why we had to keep moving hotels every day and I told him simply, “Because I am disabled.” The power outage was a big deal when we got our first room so we ended up in Troy, then back to Dearborn, and then Novi. The third hotel claimed to be completely accessible but it was not at all! That was what led us to Novi.

So here I sit in my house, reclined in my motorized chair (to take the pressure off of the bruises) well both of my elbows burn as if I am a child with skinned knees. This really stinks! I’m going to give myself more than eight days to recover because I already know that a body with MS takes longer to heal and let’s not even talk about my knee because it hurts so badly!

I am in a Facebook group for moms of boys. Today, someone posted the question of our boy’s middle names. I commented “Ramon. It’s my dad‘s name.“ A few of my nephews have ‘Ramon’ in their name for my Dad. I remember when my Dad first found out Sean‘s full name. He told my Mom, “The legend continues. I will live forever!”

Well, I think my Dad WILL live forever in both Sean’s and my life, at least! Many of his idiosyncrasies are very much alive in our minds! Sean has been going out to his hair. It is no secret that I don’t really like it! He came out of the bathroom this morning after shaving and showering and told me that his hair is not THAT long.

He told me that he would pass Grandfather’s , “Three Finger Rule.” My brothers must have told Sean about that rule my Dad had for them when they were in school. All of them went to a Catholic school and they needed to have a proper haircut for it. My Dad used to grab the front of their hair and use three of his fingers to determine if their haircut was too long. If hair stuck out of the top of his three fingers, they would have to get another haircut at their own expense.

Sean came out of the bathroom and grabbed his hair with three of his fingers and his hair did not stick out of them. He told me it was OK. I then grabbed his hair with three of my fingers and hair stuck out over the top of them! I told him that his hair does NOT pass the three finger rule!

Sean just shook his head and let me know then that I have, “Baby Fingers.”

I guess that I may have, “Baby Fingers”…