Category: A Bit Of Randomness

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!

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!!!

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

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!

Yesterday, my Mom and I had to do some errands. We went to two places and it proved to be quite stressful for me to be out and about. I wanted to write a blog post about my experiences yesterday but I was too tired to do so once I got home. I wanted to give my story the attention it deserves so I waited until today.

I needed to go to the Secretary of State to get a license plate for an accessible van that was given to me. After I did that, I needed to go to the medical supply store to get new compression socks. My Mom had gone to the Secretary of State during Covid and explained how things would move very quickly based on the appointments. I made this appointment to get a license plate three months ago. I did not receive the title in time so I had to reschedule and my appointment. It was yesterday at 2:40 in the afternoon.

I made my appointment for the Livonia Super Secretary of State. We showed up a little earlier then my appointment and I only saw a couple people go into the office. There is a Baskin Robbins in the strip mall where the Secretary of State is and my Mom went and got us some ice cream to eat in the van before my appointment. We finished in time to go in to the office for my appointment.

There was a little bit of a problem getting into the door and that was a reminder that the world-at-large does not really make concessions for people in wheelchairs. They don’t mind cutting people in motorized chairs off when they are trying to enter a doorway and all! I always seem to learn that too late! My Mom explained to me how appointments work at the Secretary of State, how it worked for her. I understood what was going to happen and she told me there was six people in the office when she went.

This is what I saw once I entered the Secretary of State’s office:

I didn’t take this picture once we entered the building, I took it after I met my angel in the Amazon shirt! Once my Mom and I entered the office, I was shocked at all of the people in there and there was a guy walking toward us. He had just talked to the guard there and he told us that they were running 45 minutes behind. My Mom looked at me and told me that we wouldn’t get compression socks because we would be waiting for a long time until our appointment. He told my Mom to talk to the guard and tell him that I have a medical condition and I need to stick to my appointment time.

She walked over to the guard who was about 30 feet away. She came back to me and said the guard was polite but there was nothing he could do. He said that yesterday was the first day the office was open to the public. The disabled station was closed. That fact kind of upset me! Apparently, disabled people do NOT need to go to the Secretary of State during a pandemic! My Mom told me that we just needed to wait, have patience, and that we should pray.

Then my angel in the Amazon shirt asked my Mom what he said and then asked me my name. He then addressed the room. He called for their attention and told them in a loud voice that, “My friend, Jennifer, has a medical condition and needs to be seen immediately. Her appointment time was four minutes ago. Would anyone have a problem if she goes to the front of the line?” The room remained silent and then he beckoned for me and my Mom come to the front of the line. We both cried as we went to the front of the line.

We needed to step out of line so I could talk to my insurance company before I got the plate from the woman. She told us just to stand aside and get the information she needed and then come back to her window. We actually went and used the disabled station to make the call. It was here where I took the picture because I could not believe that I was just about finished with my transaction and all of these people were still waiting!

I didn’t get that angel’s name and he reminded me of my friend, Joe, in stature and he had brown eyes. Once we were finished with our business, my Mom found that angel and slipped him $20 which I he tried to refuse but she just told him to get coffee, turned around, and we left.

We were able to make it to the medical supply store that was in West Bloomfield in time to order compression socks. They will be delivered to my house. It floored me that this man took it upon himself to make it easier for me. It really is reassuring to know that there STILL are good people in the world! I wonder if I will ever see my angel in the Amazon shirt again but I know that I will NEVER forget him!

My Mom’s basement flooded Saturday morning. I am lucky so far that my basement has not flooded. She has gone to her house every day to clean up the enormous mess after we complete our routine. I told her when she left on Saturday that anything that is mine, she can just throw out! I haven’t lived there for 16 years so I can do without anything that is there.

She came to my house last night with the bag and went straight to the bathroom after she took Leia out to go potty. She told me that she has bad news and even worse news. In that bag she had a wet wedding album of hers. I felt badly for her as she took the album apart and separated and cleaned each picture. Yes she was doing this, it took a while and then I asked her “What’s the even worse news?

She brought a wet picture to me that I remember taking and I was grateful that it was saved from the flood:

I stared at this picture for a long time and continued to cry. I think it was a couple years after my Dad died when my Mom got these pictures developed. I’m not even sure why we had a camera there and it probably was just a roll of film and my mom‘s refrigerator. I remember when it was first developed and the first time I saw it I looked at our faces and I remember not being able to smile when the person taking the picture (and I don’t even remember who took the picture) said, “Ready?”

My world was so cracked at that point in my life! Our faces struck me and my Mom told me that this picture shows our grief. Seeing it last night tall really got to me! It REALLY shows our grief but seeing it yesterday, I noticed so much more! I was still walking with crutches back then and it shocked me to see myself standing! I was standing tall and I haven’t stood so effortlessly since then!

I texted this picture to two of my friends last night. I wrote that it’s, “Me and my Parents” I’m still super affected by seeing this picture. I am so grateful that it is not lost forever but I had not thought about this picture since we took it and seeing it a couple years later. I think my grief is apparent today as well even though it’s so many years later. I think the tears coming out of my eyes is my REAL tell though.

The woman who sized me for new compression socks last Thursday, called my Mom yesterday. We ordered one pair to see how they work out and then we will order others if they do work out. I used to have multiple pair but overtime, they would snag and just wear out. I have had just one pair of socks for a number of years! They are pretty pricey and you need a prescription. I was able to get a prescription for them from my neurologist even though it was my knee surgeon who prescribed them originally but the fact that they work so well for me, my neurologist prescribed them.

They arrived today! My Mom washed my legs today and I have my new socks on right now. My Mom took pictures of my old socks and seeing them compared to my new sucks look it’s quite shocking! When I first started using a wheelchair, I just used the generic orthopedic wheelchair that you were given when you have a cast.

I would use the chair until the brakes were out or the armrest fell off. I just ordered a generic one online. It wasn’t until I finally caved and was sized and ordered a custom manual chair that made me think that I had been missing out for about a decade before I got one! I guess I have done the same thing with my compression socks.

First of all, they are not cheap by any means and with the pandemic, I wasn’t seeing doctors in person so my Mom and I just made do with what we had! She would see the holes in my socks while I was still wearing the sock and they would work for a while more. She took pictures of how my socks look now and I am so grateful that the new socks arrived today judging by the size of one of the holes!:

When I first started going to Barwis Methods, Mike Barwis told me that my leg hair would start growing again because of all the blood flow I would receive. I had noticed that my leg hair was not going in as much but then, it started to grow again and I had to shave more often than I had in years! Well, I’m back to not shaving my legs anymore because hair does not grow but I say this because these new compression socks feel like I have just gotten under clean sheets right after I have shaved my legs! Those of you who know, no how GREAT that feels! I STILL remember how that feels even though I haven’t felt my legs for 20 years!