Button Buddies

When I was a little girl I LOVED my dolls. My first american girl doll looked just like me and I took her everywhere. We wore matching clothes and I even cut my hair to match hers (big mistake). For me, my dolls were so much more than just toys to have fun with, they brought me joy and comfort whereever I was – especially since I was so shy and often needed that “security blanket.” 

It’s not difficult to find dolls with wheelchairs, crutches, casts, glasses, even diabetic kits and dolls who are beautifully bald, but feeding tubes? No way, tubes are not good for the brand, not something kids recognize, not cool like casts that can be signed or wheelchairs that can allow you to take the special, rarely used elevator at school – yet for those who have tubes, these toys can make an incredible impact, and that is why I’m here to be their voice.

25488709_10210870166166969_1779141679_n
Kevin, my “tubie friend,” has a central line & tube(s) like mine!

When I got my first feeding tube (oh so long ago), my mom made me a “button buddy” by hand and to this day, that koala, Kevin, goes with me on every long trip to the specialists, every hospital admission, and is always arms reach away when I’m not in my “safe space” or when I’m struggling to feel strong and positive about my situation. For me, my buddy represents the love and support I recieve from my mom and the rest of my family as well as the strength and perserverence I have had since getting my first tube, my first diagnosis even. Kevin has two tubes and a central line now, and he’s been a trooper through it all.

With toys like these kids are able to share about things that may otherwise be difficult for them to communicate or to understand; through play they are able to learn from one another and see all of these new things in a way that is not scary or confusing, just kids being kids – all together, blind to any differences, and every child deserves that, tubie or otherwise. 

If the buddy goes to a child with a parent who is a tubie, the child can now not only watch while their mom/dad is “eating” or doing fluids or changing the dressing, but with a buddy, the child can now participate by using the buddy to do these tasks right along side their parent! The same is true of siblings of tubies, classmates, and tubies themselves as they learn to care for their tubes and go through procedures, hospital visits, tube replacements, and feeds or medications that they have to do daily at home or inpatient. 

Button buddies allow everyone in the tubie’s life to be involved in as much of their loved one’s journey as possible in a hands on way that can help them learn and grow and understand all of the unknowns and fears they came in with. Heck, even care takers can get a practice round in on a buddy if they’re feeling anxious about how to hook up their tubie or access a line, prime out the air, etc.

IMG_1662
thank you AMT for the tubie bears!! what an incredible donation, I’m humbled and overjoyed.

Buddies have the ability to provide comfort beyond the normal “safety blanket” item that most have and are attached to as children, it becomes another warrior in your battle and another supporter in your journey.

The incredible thing about play is that children will take in a new toy and hardly even notice any “difference” in it, in this case they may ask what the tube is, maybe what it is for, but likely no more than that, and then it’s just another toy. There’s no judgment, no prejudice, simply children playing together, learning as they go, growing, and that in turn becomes them widening their perspective and accepting one another with no qualifications, no recognition of their differences – just as they took in their toys.

When I give a button buddy to one of our little tubies and they see that tube, the light that comes into their eyes is just incredible. Suddenly that toy & it’s very expensive piece of plastic in its tummy changes how even the “littles” themselves see the feeding tubes, how they accept their own tubes, how they accept themselves. IMG_3006

You can so clearly see  that the  button buddy – a stuffed animal –  has the power to change how these children view their tubes from being a medical device that makes them different  into a part of their body that makes them special, that their tubes are not scary or gross or something to be ashamed of. When they fell in love with their Button Buddy tube and all, they have accepted themselves – tube and all.

———————————–

My goal this year is to spread the love and the comfort that my button buddy has brought me with as many of our “newbies” as I can, and that’s all in thanks to our donors who have donated the tubes and stuffed animals or the funds for our animals and the shipping costs it takes us to send out our packages.

We’ve had incredible donations from both AMT (Applied Medical Technology, Inc.)and eSutures Medical Supply Sales, both of whom are making it possible for us to send buddies to an incredibly increased amount of tubies this year than any year past ( we are still always looking for low profile tubes) and I just can’t wait to share this with you all….

If you want to sponsor a Button Buddy you can do so by making a donation of anywhere from $12 (for just the animal) – $30 (for the button & “surgery”) – each bear is valued at $30 and shipping is $8-$15 each.

PayPal & Venmo are both @positivelyrachel.com

You can also purchase an animal and send that to us to use to create a buddy! We have an amazon list or you can pick one out on your own and ship it to us!

Here is our AMAZON Buddy link!

https://www.amazon.com/hz/wishlist/ls/W9IXBH9TFV4A?ref_=wl_share

Xoxo

Rachel

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.

IMG_8299
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” 🙂

DSC_0845

DSC_0772

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 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 🙂