Amanda: The Real Life Journey of A Newbie Tubie Volunteer

“Hiyo- I’m Amanda Hall & I used to be a tubie and am still living with chronic illnesses! I woke up November 3 of 2012 with what i thought was the stomach flu, but I never got better. I was told I had the second most severe case of Gastroparesis at Cleveland Clinic in Ohio, actually same results as Rachel, the NewbieTubies director! Eventually, I chose to use my rare for research. When i first got my diagnosis, i thought gastro-what?! This journey has taken me on a wild ride, but dang did life become so much more beautiful than I could have ever possibly imagined.

6 years ago I was 175 pounds, a college volleyball player, and a personal trainer. i worked 2 jobs and went to nursing school; I studied health, fitness, and nutrition like it was my job. I went to bed completely alive, and in one 8 hour night of sleep, I woke up undeniably dying. i lost 50 pounds almost immediately and my journey with feeding tubes started 6 months into this wild ride. My first tube was an NG tube, then a G tube, then a J tube… then a G-J tube. I didn’t have time to stop and think about what was really happening- I was just grasping to an inkling of hope for a chance of ‘normalcy’ again. After multiple attempts, my body wouldn’t accept a feeding tube, and I graduated to a hickman catheter for tpn. I know this all may seem overwhelming at the beginning, but namaste!- this tube is going to GIVE YOU LIFE!💫

Throughout the many years of fighting so desperately, my body started recating to every adhesive and physically rejected every forein object they put into my body. I would cycle thru feeding tubes like I was at the carnival. But, man did those feeding tubes allow me to be a kid again. they gave me energy, adequate nutrition, vibrance, and kept me alive when my body couldn’t figure out what it was supposed to do.

After 5 years and 24 extensive surgeries, I reached the end of my treatment options and chose to remove my stomach in the hopes that it would help improve my quality of life and offer reasearch for future generations who will be struggling behind me. In December of 2017, i went in for a partial gastrectomy, but because of complications, i came out with a stromach the size of TWO TABLESPOONS! My recovery was long and full of complications, but I am confident in saying that my Gastroparesis has been put on the back burner, rather than igniting a wildfire every. single. day. So worth it.

I graduated indefinitely from tubes in August of 2018 when my body began reacting to every tube placement with sepsis, and the life-threatening risk became greater that the life-saving reward. My last feeding tube was removed in March of 2018 due to severe sepsis, fungal and bacterial infections. i thought i beat it, but life would never be the same for me again. Sepsis and Gastroparesis quite literally knocked me off of my feet when I was hit with dysautonomia 3 months back.

As part of my treatment, i go to an infusion clinic 3-4x per week for saline infusions. Although I can’t have a tube permanently anymore, I am still a tubie more than I am not!

Yes- it’s scary, uncomfortable, disheartening, and frustrating… but I found that I was so much stronger at my lowest weight with a tube hanging out of my chest than i was at my highest weight, obnoxiously fit before I got sick. It’s all about perspective. and being kind to yourself.”

*Amanda shared her story with us and has joined me and my supporters in our journey to continue Newbie Tubies and grow as we can. I receive applications every day, and without the help of my donors and volunteers, it wouldn’t be possible. Thank you, and for more info, check out the section on newbietubies or find us on Instagram @newbietubies. We are always happy to hear from new people interested in learning about the project!*

Rachel

A Guest Post: Does My Illness Define Me?

This is a topic widely discussed within the chronic illness community. You’ll see people saying everywhere, “Don’t let your illness define you.”

You know what? No, my illness doesn’t define me, but it is ONE of the things that defines me. But just here is a list of other things that define me:

My favorite color.
My favorite TV show.
My favorite animal.
The thoughts that go through my mind before I go to sleep.
What causes I feel passionate about.
What I like to do in my spare time.
What kind of characteristics I’m drawn to in a friend.
The way I react to specific types of situations.
The little things that make me laugh.
How introverted or extroverted I am.
What situations I tend to shy away from.
How I treat strangers.
How I treat my friends.
My goals and aspirations.
What makes you grateful.
The people you love.

And then there’s the debate. Does my health status go on that list? I’m not sure it absolutely goes on that list. But I can tell you without a doubt that my chronic illness affects almost every single thing on that list. And yeah, that makes it a big part of me in the end.

For example, the things that make me grateful have changed since I became sick. I’m grateful now for things that I previously wouldn’t have even known to be grateful for because of my illness. I treat strangers differently now because you never know what they’re going through. I do activities in my spare time that my abilities allow me to do. I feel extremely passionate about raising awareness for these causes that I may never have even been aware of had I not gone through this.

A very wise woman named Kerri Sparling, who has Type 1 Diabetes, coined the quote “Diabetes doesn’t define me, but it helps explain me.” And to me, that’s an incredible way of saying it.

I think the phrase “Don’t let your illness define you” should change to “Don’t let your illness be the only thing that defines you.” Because it is inherently a part of us, even if we didn’t choose it. But each and every one of us have other things that explain who we are even better than our illness does. And sometimes I do like to choose to focus on that.

 

Blog post by Michelle Auerbach. For more from her, check out her blog at http://www.lovelightandinsulin.ca/?m=1

 

My Relationship With Chronic Pain

For the past few years, I’ve been very honest and open about my journey with Gastroparesis, it’s been one of the main chronic illness I talk about. So I decided to talk about another pretty major part of my life.

My relationship with chronic pain started when I was 12 years old. It was winter time, and I was doing a indoor winter conditioning camp for softball. During the camp, after a throw my right shoulder started hurting. Turned out, I tore my labrum pretty badly. So at age 13, my first surgery in was done in January and my surgeon cleared me for surgery that following season. I think I was cleared too soon to return to playing softball again because soon it was re-torn. I managed to play through the season, pushing through the awful pain I was eventually placed as a designated hitter. That was my very last season of softball, one of the biggest passions I’ve ever had.

Eventually I couldn’t handle the pain any more and hoped a second surgery at age 17 would fix my problem. But I was wrong. I remember the pain from that surgery being so extreme, I slept in a recliner for weeks. I’ve done so many hours of physical therapy for my shoulder, and it’s never really helped. Unfortunately the 2nd surgery was also unsuccessful.

During a follow up with my Orthopedic Surgeon, I decided to mention to him how I was also having pains in other joints. Hips, jaw, back, knee for the past 2 years. So he ran blood work, and sent me to a Rheumatologist. The doctor I saw, did some tests and gave me a diagnosis of ” fibromyalgia with hyper mobility” then handed me some brochure, and a handful of different medications. Unfortunately there weren’t very many in the area at the time so it was hard to find a good one. My body was so overwhelmed with all the different meds, all it did was make things worse. They upsetted my stomach, or made me extremely tired. So durning my Senior year of high school, was spent doing a lot of sleeping.

For a while I was able to manage, especially the pains in my shoulder. The other pains bothered me, but I was able to push through them. Lately, the chronic pain has been a struggle. I get muscle pains all over; my legs, arms, back. I have instability in my shoulder so it often feels like it’s not sitting in its right place. And at times that can be so painful it’s debatating. Some times it gets very frustrating, but I’ve learned to use certain coping skills when I know I need them. On bad days I’ll try to surround myself with things I like. I’ll listen to my favorite music, go and be outside, etc. 

Two different surgeons have told me a 3rd surgery probably wouldn’t help, so I’ve had to accept that in all likelihood this will be a part of my life, for the rest of my life. I know a lot of my friends can relate; they as well have painful illnesses that help them understand. It’s nice being a community that constantly amazes and inspires me. So, because of that, I guess my relationship with chronic pain will continue on as “it’s complicated.”

 

 

A great piece by one of my close friends and fellow chronic illness warriors, Sarah! Follow her blog at chronicallywandering.wordpress.com 🙂

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