Creating a Blog ✏️
In my 32 years on this earth, I have collected an array of embarrassing moments, life struggles and random happenings. I figured it's about time I start sharing them with the world. If nobody else reads this, then it can be my personal diary of embarrassing moments.
Life is hard, but these things make life a little easier…
1. Ellipse by LegXercise
This is definitely a larger investment, but great for someone like me. I have a stationary bike, but it is getting harder for me to get off of it. The Ellipse is a motorized leg movement machine. I am able to sit on the couch, do work or watch tv while exercising at the same time. I do have to pace myself, because I can still feel the burn in my legs afterwards. I linked the main website, but check QVC for some great deals!
2. Rolling Desk - Extra Large
This is another bigger investment, but as a graphic designer, I use this EVERY SINGLE DAY! In the past, I have used the standard lap desk, but since my quads are weaker, my laptop gets heavy and my legs ache. When I had to get surgery a couple of years ago, I was looking at a few table options. I came across this rolling table that is extra large with a handle to easily adjust the height. I can sit in bed and the bottom area will roll under the bed with the desk across my lap. I also work a lot from my couch, so I can easily roll it from one room to the other. There are a variety of options but the link below is what I got. The extra large version is nice because it fits a laptop, my notebooks and my drinks.
3. Squishmallows
I thought Squishmallows were just a fad until I got my first one, the sprinkle cupcake, when I had surgery two years ago. I have grown quite the collection since then. They are surely dopamine decor, but for someone with a disorder, they also help! I have a variety of sizes I lay with, lay on, hug, and the smaller 8” ones are perfect to rest under the neck. They are extremely soft and huggable.
4. fit-flavors
This recommendation is for my friends local to St. Louis, but I know their are other similar companies across the country.
I will be the first to say that I need to eat healthier, drink more water and less soda. I am forever working on my choices, but when I choose to eat fit-flavors meals, I always feel great. They are freshly made, grab-and-go, stay in the fridge and microwave in two minutes! This makes eating healthier a lot easier and they have a variety of meals. I tried food prep services but I don’t have the energy to cook, so this takes the work out of it.
5. Hourly Planner
I am a paper person and always use a paper planner and To Do lists. My Occupational Therapist recommended for me to use an hourly planner. I tried it this past year and it definitely helps! On Sundays, I try to plan out my weekly activities including chores and personal tasks like showers or doing the dishes. The hourly planner helps me spread out my energy for the week. It’s never perfect, but helps me think about and try to manage my time and energy a little better!
Let me know if you try any of these out, have any questions or if you have other devices or assistive aids that you love!
Share them with me at: creatinginclusivity@gmail.com
- Emily
5 Self Care Ideas ♡♡♡
Hot Baths: If you can’t get out of the tub…like me…then get yourself a bath seat...or even two! I also have a smaller one to put my legs on. I put epsom salt on my legs and a towel with hot water over that. It’s as close as I am getting to a bath these days. Relaxing at its finest.
Heating Pad: If you don’t have one of these in your life, get one ASAP.
Journaling: I mostly journal after a long day and need to let my feelings out. I have also felt that journaling on good days as well helps clear my head and lowers my anxiety. Sometimes it’s a quick little note, but it is a great way to write things down and let them go.
Naps: Take the nap! Sometimes I need to nap before I can function or do anything else. Not sure if this is disorder related, but I never miss a good nap.
Treat Yo’self: You may need to set a budget, but sometimes it’s okay to treat yourself a little. It can be as small as a sweet treat or that item you’ve been eye-ing.
New Year - Same Disorder
Some people start the New Year with resolutions and goals. I do that as well, but I also have to think about life with my disorder. Every new year, I always want to prioritize my health, eat better and take care of my body. I also think about a new year with the same disorder. There’s no cure for it, so it’s a lot for me mentally. Will it get worse this year? How many falls will I have this year? I try to make myself focus on the positive side of things, but sometimes those intrusive thoughts sneak in. I have tried to channel having my disorder for good. Last year, I became an ambassador for SitnStand and Fashionable Canes. I am hoping to grow these relationships with those brands this year and seeing where life takes me. I work full time and run my art business, it’s a goal of mine to keep growing this blog and spread awareness about my rare disorder.
I call this look “Fall Chic”
I am always down for a good pun. I sadly took a hard tumble in late October. I landed hard on my foot. In order to keep going, I have to be able to laugh at myself. One day I thought about the fact that this is my fall chic look. Hitting the floor is never fun, but I have to enjoy the little things that make me laugh. This could be my coping mechanism or just a personality quirk. A friend of mine told me I could also call this boot season. Having a disorder is not easy, but silly little moments make the hard days a little easier.
Travel Essentials
Here are a few items I have been packing on trips to make my life easier.
I use a cane daily, sometimes a walker on bad legs days. When I travel, I also pack my wheelchair. Here are a few other items I started bringing. I made a list in my phone, but wanted to share a few of the most important items I bring when traveling.
1. Compact Assist Railing
This is great for travel because it comes apart and lays flat. It fits perfectly in my carry-on suitcase for easy travel. I never used to pack this, but I would be trying to get out of bed and wish I brought this along.
2. Sit’N Stand
I have the classic & compact versions of the Sit’N Stand. If you can only choose one, I would suggest the compact for travel! It packs up in a carrying case and works great on the go.
For $50 off, use code: emily50off
3. Raised Toilet Seat with Handles
This is not the most compact thing to travel with, but it is the best I have found! I have a commode at home, but that doesn’t easily pack up. I still may need a little assistance, but this at least raises the toilet 5 inches.
4. Grabber
This is a fabulous grabber! My old one broke, so I recently bought this 36” grabber. It is great since it folds up. I drop things all the time and always wishing I packed it when I travel. Now I can with this foldable one. It also has a magnet on the end which helps if you drop a key or metal hair clip.
5. Heating Pad
This is a game changer after a long day of travel or adventure! Rolls up and fits great.
6. Biofreeze
Along with the heating pad, Biofreeze helps with pain relief after traveling! My favorite is the roll-on gel.
Let me know if you try any of these out or if you have other devices or assistive aids that you love!
Share them with me at: creatinginclusivity@gmail.com
- Emily
I’ve fallen & I can’t get up…
I have always been a klutz, but especially after finding out I had a disorder. I joked that I need to be one of the spokesperson for Life Alert. It’s targeted at the elderly, but sometimes more than just the elder can benefit from these kinds of devices. Well, I came across the SitnStand, did my research, purchased not only one, but two of their portable seats (the classic & compact) and I am here to tell you I have fallen in love with them. Here’s a video explaining my experience of the SitnStand devices. Since this product is fairly new to the market, I reached out to them to get more involved…it worked! I am officially a Brand Ambassador for SitnStand.
Shop the seat on their website: https://www.sitnstand.com/products/
For $50 off, use code: emily50off
Burn Boot Camp: Be Their Muscle Event 2024
This is my third year attending this event. I am so thankful for Chelsea Theodoropoulos and the Burn Boot Camp community for another successful Be Their Muscle workout event. Thank you for everything you do for the MDA families! You are changing lives and making such a positive impact in the community.
Empower - Impact - Encourage - Inspire
Let’s hit the dance floor…
When you go to weddings and hear the phrase, I’m going to “hit the dance floor,” I take it to the next level. I actually HIT THE FLOOR. The first time, I danced the night away with my cane on the dance floor having a blast. I was the most shy kid growing up and hated the to dance. After I grew up and out of my shell, I grew to love the dance floor and have accepted I have awkward dance moves. Who cares?! Because you can make the best of friends there. Well, at the end of the night, I went to use the restroom and unfortunately my legs gave out and I hit the floor hard. It was not a fun experience. Fast forward a couple years to my friend’s wedding in early 2020. The wedding party dances happened first and then the Cupid Shuffle came on to bring everyone out on the dance floor. My friends said they had no idea how to do it. I overly confidently stated that I indeed knew how to do the Cupid Shuffle. Needless to say, somewhere between, the lefts, rights and kicks, I HIT THE DANCE FLOOR, alright. That is when I learned my lesson the hard way—to use a wheelchair when going to weddings, especially when hitting the dance floor. That is what I do from now on. It makes life a whole lot easier. I hope you find a little humor in this story, because that is how I deal with having a disorder. There are good days and bad days, but you have to enjoy the good one and find humor after the fact.
“Darling, don't ever be too shy to dance”
-Audrey Hepburn