Recovery and Discovery: A New Idea

My recovery process from having my new feeding tube placed (switching from a GJ to two separate tubes, a g and a j tube) has been really challenging. Due to some surgical complications and my connective tissue disorder, healing has been difficult and I’m still in a lot of pain. I’m lucky, though, because I have an amazing support team at home who are here for me and care for me no matter how long it takes; not everyone has that.

Because I’ve been having such a rough time healing and I’ve been in bed for so much of the last 4 weeks I’ve had a lot of time to think; through the online support communities I’ve seen so many people go through these diagnoses and tube placements alone. I just can’t stand to think of how terrible it must be to have to be your own support system in times like this; for two weeks I couldn’t even get out of bed or walk on my own, I still can’t bathe on my own or prep all my meds, feeds, and fluids. I’m dependent on my parents for almost everything, for individuals who have to have tubes placed and don’t have support systems and don’t know much about feeding tubes (who does if you’ve never had one, been on the online pages, or had a loved one with one?), this can be an extremely scary and challenging adjustment.

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My support system 😉

What I’ve decided to do is start an organization/nonprofit that sends packages to new tubies—people who are getting their first feeding tube placed—so that we can give them some comfort and some of the “tubie essentials” to get started with. This would include things like tubie pads, microwaveable heating pads, cute masks, pill crushers/sorters, journals to write symptoms in, allergen free, natural soaps, bath bombs, etc. I’ve compiled a list with more products, but we are looking for anything comforting for someone who just came out of a tube surgery (no food!).

Right now, this project is in the “just a dream/just getting started” period as we try to find people willing to donate products to our cause. We are asking small, spoonie geared businesses as well as local businesses who make things like soaps, hats, blankets, etc. So, if you have any interest or know someone who might, please let me know! There’s absolutely no pressure to donate, though!

I will also be putting the profits from my paintings into this project (once I turn a profit!), so if you’re interested in looking at my art, please do! It’s posted on my blog in the lifestyle section under “My Art” 🙂

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I wanted to share this with you all as it will be something I’m working on a lot for now, so I’ll try to keep you posted! This is a way for me to help others and be productive while hardly leaving my room—as long as we find donors! So thank you so much for reading and I can’t wait to see where this is next time I update you!

 

A Glimpse at Inaccessibility From a First Time Wheelchair User

The other day I had my first experience using a wheelchair in public. Out of four and a half years of being chronically ill I’ve reserved wheelchair use to rolling in and out of the hospital, mostly out of pride. My illnesses limit me in so many ways, I didn’t want to allow it to take any other ability from me either. So instead of using a wheelchair as an aide when I was sick and weak, I powered through or sat on the sidelines. Recently, I decided letting life go by because I’m too stubborn to admit I need help is silly and I ventured out for a day of shopping with my girlfriend. I made it through the first few stores leaning on the shopping cart as support but by the end of the day it was clear I needed to use a wheelchair. I expected the stares from strangers but what I didn’t expect was the blatant inaccessibility “accessible” places are.

Because I was too weak, I required my girlfriend to push me. This tied up her hands and crossed out the option of a shopping cart or basket to carry our items. Suddenly I found lap full of various things we wanted to purchase. While this wasn’t a huge pain this time, it would’ve been a problem if we were buying more or heavier items. How can shops expect a wheelchair user to navigate with either a small basket attached to a motorized cart or no basket at all?

The second thing that was an issue was my sight line was cut in half making it impossible to see the higher selves and options on them. While shopping in one of my favorite stores, I found myself able to see only about half of what I normally experience while shopping. And forget trying to reach anything on a high self, it was hard enough to grab things from my sitting position in the wheelchair.

But by far the biggest problem we ran into (pun intended) was the fact that the aisles weren’t wide enough. I’m sure anyone will admit the aisles in stores are narrow and navigating it with a shopping cart is hard enough, but I never imagined how hard it would be to find my way in a wide wheelchair that wasn’t exactly fantastic at taking turns. We found ourselves bumping into corners and trying to wiggle our way out of the line of other shoppers trying to pass.

Until this recent experience, the inaccessibility of stores was never forefront in my mind. I knew my friends who use wheelchairs often encountered issues while shopping, I just never realized how frustrating and inconvenient it was. Making sure spaces are accessible is extremely important, but so is ensuring those spaces are truly accessible for all.

Blog by Carolanne Monteleone

You can find more by Carolanne @aheartforhumanity.wordpress.com

Learning to Live in Today

This week, while the class I began school with started their fourth year of college, I started my third year of medical leave.

People often ask me if it makes me sad to see posts about college or to drive through grounds when I’m headed to the hospital, but mostly what I feel is disbelief. How has it been so long? Does life really move on so easily without me? Will I ever get to be “normal” again? Do I even know what that means and could I return to it if I tried?

At a young age we start to understand that our lives follow a guided path; sure, everyone’s is different and we all stray from that path at times, but in general, it is set up for us. We grow up being loved and cared for, we learn right vs. wrong, we go to school and hopefully graduate. From there, you either get a job or “further your education,” aka more school. Some people get married, some have children, some do neither. The order isn’t the same for everyone, but we all make plans and in general, most people end up following some variance of “the path,” as I’m calling it.

Well, my path was altered in high school. I got (really) sick when I was about 16. It took me years to get real answers, in reality, I’m continuing to seek more answers to this day, but since getting sick, my life has been anything but “normal.” I spent time on homebound from high school, I did one year of college before withdrawing on medical leave, I’ve lost countless friends because of these illnesses, and I’ve lost any firm perspective on what my future may hold. However, I’ve also grown and become a stronger and wiser person.

Do I wish I were starting my fourth year with my friends right now? Of course. But I’ve learned that we can’t always predict where we will be in four years or four months or even four days…

You don’t have to fit anyone else’s mold. Yes, go to college; study whatever you want! Or, take a gap year. Travel. Volunteer. Be an actress, an athlete, an architect, a doctor, a musician. Be a stay at home mom, a stay at home dad. Be you.

Most importantly, don’t hold back. Splurge where ever you can, big or small. Do all you can to live in the moment and enjoy every possible second. Today, right now, is all you have. Now don’t go spending your family’s life savings on lottery tickets or a trip to vegas using the excuse “Rachel told you to,” but buy yourself something you’ve been wanting when you get your paycheck, just because you earned it. Take your parents or your family out to eat just because they deserve it. Do something just because it makes you or someone else smile, do it just to make memories.

Life is beautiful, but it is short and unpredictable. Throw caution to the wind and always follow your heart.