I've decided to take you guys along with me for a week in my life. This is by no means a detailed week in my life. I really think that would be boring. It is actually the highlight reel. I don’t want to beat a dead horse with all that comes with needing help and being in a wheelchair. It is fair to say that my glam squad helped me get ready every day and I got tucked into bed every night by mom. I did not starve because someone always made my meals and fed me. I was not naked because someone always dressed me. I was not alone because someone is always with me. I got stuff done because someone was always there to help me. I’m one lucky girl because of the people I am surrounded by who encourage me to do the things I can and be as independent as possible.
Ah Friday, some say thank God it's Friday. Me, I’m not so sure. After finishing what seemed like chores, returning emails, listening to voicemails, and OT, I needed my coffee fix. We went for my daily addiction, and anybody who knows me knows it's Starbucks coffee. Thank goodness it was open, the hours have been spotty but not today! I got my usual order but kicked it up to a Venti, iced coffee with caramel drizzle, half and half, vanilla, and classic syrup. I was all set ready to slurp up, like a vacuum, my drink. I earned it! At that moment before I could take my first sip I squeezed the cup and the lid popped off. This startled me and sent my drink all over my wrap. My first thought was mom is going to kill me, she just washed this. Lisa quickly dried up the coffee but the smell lingered. Thank goodness I like that smell. Then she began stuffing tissues in the leg of my pants like making me the Michelin man. I had no idea what she was doing. Then she explained the coffee spilled down my leg and into my shoe. Most people would notice this but I don’t. I would have never known it spilled down my leg and into my shoe if she hadn’t stuffed my pants. I also managed to find time for a little retail therapy. I needed to find a “work” shirt for my big meeting next week.
Ordering my coffee, spilling my coffee, drying up my coffee.
Why is it that when the weekend comes I feel everything is so boring? I got a wake-up call, okay it wasn’t that early but it was before noon, which sent me into many different emotions. My friend is getting married and I am in the wedding. She wanted the Bridal experience but the salon only allowed 5 people. Her mom, sister, maid of honor, mother-in-law, and sister-in-law. That made 5 and mom and I would have made 7. As promised though when she found the dress she face-timed me. Oh, how I wished I could have been there to see the joy and experience the excitement. She will make a beautiful bride and I have the honor of standing up there with her on her big day. Something funny I learned today from a book I was reading. They used the word Hotify. According to the Urban Dictionary, it means to make something hot or spicy. Mom and I used the word all day and it made us laugh about who could use the word the most. I think mom won but I was pretty close. So if you get a chance use my new word, Hotified.
I wasn’t sure how I was gonna feel today, it was a big day, Bridesmaid dress shopping. There are so many choices and things to consider. So many opinions and a short amount of time. It's funny how when you get together with friends you just want to chat but you need to get down to business. Luckily because of me, or rather my massive wheelchair, we got extra space to spread out and enjoy the afternoon or rather hour. Although I only tried on 2 dresses the bride had a vision and we didn’t need any more. We were all different sizes. I actually wore a size 10 for the final picture. Okay to be fair, I am not actually wearing the dress, it is draped over me because of the hassle of putting it on again. Afterward, we went to the local TGIF Fridays for what was supposed to be a nice lunch. The pandemic has totally changed the dining experience. First off we were one of the only parties in the place. As you expect our food did not come out quite how we had hoped. The server had to be found to deliver all the meals. He explained to us that the cook had been overwhelmed by our order and missed one. To be fair there were only 8 of us and probably a total of 8 other people in the place. I can only imagine what would have happened if the restaurant was actually busy.
A boring day or it usually is. The shower chair that I use to take a shower, duh, got stuck in the recline position. Normally this would not be a problem but I needed to get out of the chair and dressed. My lift would not work as I was stuck in the recline position so we had to come up with a plan. Thankfully mom is quick thinking and she rolled me out of the broken chair. No easy feat. She lifted up the armrests, took off the footplates, and rolled me naked as a jaybird onto my bed. I was both surprised and relieved that her idea worked. I couldn’t imagine how I was going to get dressed and thought I would spend the day naked in my chair. The rest of the day was uneventful. I have a standing appointment with the chiropractor. I went to Chili’s, so much better than Fridays. They actually have people that work. I then needed to run some boring errands, Kohls’s for a pickup, and Ulta for makeup. Mom hates that store and I love it. She feels lost and I feel at home. Funning how something I can’t see makes me feel at home.
I had a meeting with my Inspire Connections committee. We put on the monthly meeting to help other families with issues and give them resources to help them on their journey. This meeting was about transition. I felt that we had beaten this topic with a dead horse. To my surprise though It was a very interesting meeting. I felt pretty good since they asked about my experience and my opinions to offer to the other families. I was proud of myself. What a busy day, thank goodness it is going to snow tomorrow.
I thought today was going to be one of those relaxing lazy snow days. We had gotten about 6 inches of snow and I was ready to go back to sleep. Again thanks to the pandemic people still get things done, virtually though. I had an 8:30 am virtual meeting. I figured the meeting would go on for an hour and then I could go back to bed. NOPE. During the first hour of the meeting, we got nothing done. Everyone was talking in circles trying to get their ideas heard. The meeting was supposed to end but did not. All I could think about was getting my coffee and that I had an OT appointment at 11:30. The meeting continued but it was the most productive 30 minutes ever. We settled on a tagline, and mission statement and assigned everyone tasks to complete for our presentation on the 10th. As I write I can’t remember what I am supposed to be doing. Thank goodness there are meeting minutes and notes. I was charged from the meeting and knew that I would soon get coffee. Dad cleared all the snow from the driveway before he went to work. He thought he was going to stay home all day. NOPE. He got called in but thankfully cleared the driveway first. Mom cleaned off the car and we boogied to my OT appointment. We live in a town where the transportation department is A+ with snow removal. The roads were clear of all traces of snow. Even the parking lot of the OT was clean. I was pleasantly surprised to find that the handicapped spot was not the dumping ground of the excess snow. I got into the office, chatted with the front desk person, and went back for my appointment. I sat there for a few minutes. The OT sneaked around the corner only to inform me that my appointment was actually at 12:30. I was an hour early. I looked at mom and said. I need coffee. We left, only to find Starbucks closed! Oh no, not again! Thankfully Dunkin Donuts is just down the street. I got what I needed and headed back to the OT therapy.
This was all before noon, which was actually the time I was planning on getting up. I was wiped out. After checking my mail and phone calls. I spent the rest of the day on TikTok and helping mom with dinner. Although I got into bed early I did not go to sleep early because I figured what was the point I would be awakened with my nightly muscle spasms an hour after I laid down. I watched the Bachelor. Yes, I do enjoy the mindless nonsense that goes on. I can’t believe that people act that way toward one another, but again that is for another blog.
Today I needed to complete my research and prepare for my meeting with the school district about my idea to be more inclusive. To have students with disabilities teach other students about disability. The hope was to open the means of communication and encourage empathy. It has been a dream of mine for while now to make this happen. I never realized how much goes into preparing for a meeting. I always thought people go to meetings and talk and it's done. I wanted to be prepared, more than prepared. I began to feel very overwhelmed and felt myself shutting down. I was mad that I had so much to do. I needed to share my idea and pave the path the way for those to come to make it easier for them. I put a lot of pressure on myself and began to cave. It took me several hours to realize I had the information and needed to speak from my heart and rely on my experience to be able confidently convince the school district it needed to be done. I took a much-needed break by playing this new game Coin Masters. I’m still getting the hang of it but it is addicting. After dinner mom and I went on a mission to find a cushion to make my new wheelchair more comfortable.
Ever since I got my new chair I have had nightly leg spasms and cramps in my calves. They start at about 12:30 am and just when mom massages them away and I settled back to sleep they return with a vengeance. This continues about every hour until 2:30 when I finally sleep. I have discussed this with the wheelchair people but they seem to think it was due to improper positioning of some parts of the chair. So they adjusted it, but that made no difference. These spasms started the day after I got my new chair so I know that it is something with the new chair. I suspect it is the seat. They decided to do a molded seat, which I must say feels like I am sitting on a rock. As is always the case I must prove my theory before they will do something about it. Today marked the sixth day since they changed the laterals and hip guides to the “correct” position. The spasms didn’t stop and I need relief.
Today was the big day, my meeting with the department heads of curriculum development for K-12. It was a fantastic meeting. I felt heard and part of the discussion. They were open to my ideas and appreciated that I had done so much work. They do a great job but they agreed they could do more. They are very interested in what the future will hold and how we can move forward to a more inclusive environment where all students have opportunities and thrive. Once this project is truly off the ground I will share all the details. For now, I am happy that I am heading in the right direction again. After the meeting, I had PT, and what a mistake I made. I asked her to stretch my ankles and calves due to the multiple spasms I have been having at night. Unfortunately, it triggered the spasm of all spasms. They had never seen this before. My foot bounced like a Harlem Globetrotters basketball. Moving in every direction at speeds unknown to humans. Seriously it was pretty bad. As a matter of fact, it continued until I got home and mom got me out of my chair and repositioned me. I was thankful she got them to stop because I needed coffee.
I never realize how much I do during the week. I thought all I did was get coffee, run errands, and go shopping. I found out though there are so many moments we must all overlook during the week. The little things that make our days interesting. It's been a week full of unexpected feelings and emotions, meeting successes and equipment failures. I am thankful to be able to get up and do this every day and look forward to the adventures next week brings. I hope you enjoyed a peak at my week.
Thank you for reading until the end!
This is the view from my wheelchair, where miracles can make a difference. Always Strive for the Impossible. Come back next week to see what is on my mind and hear more about my experiences and The View From My Wheelchair.