Shop Away, Newbie Tubie Style

Below are NewbieTubie Package shopping lists and links to our wishlists for items we are in need of right now! This list is current and we keep our wishlists updated based on supply!

We are so thankful for each and every donation, we truly cannot do this without your support and generosity! We are in need of donor support for products as well as for shipping fees to keep going, so share our posts to help us reach more donors so that our loyal followers and community don’t have to keep funding it 😉

Thank you in advance and please don’t hesitate to reach out with questions or suggestions on fundraising or other possibilities ✨

ETSY: https://www.etsy.com/people/rsb4fc/favorites/newbie-tubies-wish-list?page=3

AMAZON:   MAIN LIST: https://www.amazon.com/hz/wishlist/ls/1J7LHVRD4V3A6?ref_=wl_share

BUDDIES NEEDED: Purchase A Buddy to sponsor a button buddy! Add a note so we know who it is from and we will send you photos when we create the Button Buddy and send it out! 

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

Sponsor a Book! https://www.amazon.com/hz/wishlist/ls/A2HGIE93P9BL?ref_=wl_share

PAY PAL: positivelyrachel101@gmail.com // VENMO positivelyrachel/positivelyrachel101@gmail.com

SHOPPING LIST: ITEMS WE NEED: 

MINI GERM X – you can get these for 97C at Walmart as well as at any pharmacy or the dollar store! It is SO important that our recipeints have these while they heal, especially since they are having surgery during COVID19. So when you shop for yourself in person, for pickup, or online, add in a few for Newbie Tubies! 

MINI Q-TIP Containers! We need q-tips! The travel sized ones are PERFECT for our care kits! You can find them RIGHT BESIDE the MINI GERM-X at walmart for 97C or at the dollar store for $1! What a steal! We put these in EVERY PACKAGE we can! 

BARRIER CREAMS – We need barrier creams (similar to diaper creams!) for our newbies to use as their stomas (tube sites) heal! 3x antibacterial ointment and calmoseptine also work, if you find them in small tubes we can send those out! Off brands accepted!

CHAPSTICK – We are out of chapstick and it is almost that season again! Any type of chapstick is accepted, so send us your favorite kind to share with a newbie!

FACE MASKS/Self Pampering- (Skin care masks, not surgical/COVID masks, tho we do need those , too!) We love including care items as well as spa/pamering items like face masks & epsom soaks and nail kits to let people do at home pampering post op! A little self care is always comforting and makes you feel nice and fresh, so send us some of your favorite face masks and soaks or any other self pampering products so we can send those out!

FACE MASKS – AGAIN? We do love including surgical masks, so if you make cute COVID masks, send them our way!

Baby Bath & More – We need baby bath supplies as well! Fun items like bath paints are always great but also sponges, towels, bubble bath, and bath toys are welcome! We also use baby socks, chewies, and all care items.

Onesies – Solid colored onesies – if you have any of these on hand or see them on sale, send them our way!

FUZZY SOCKS – who doesn’t love these? 

TUBIE ITEMS- We always need tubie pads, clips, tracheostomy pads, and more! Our Etsy list is the place to go!

BOOKS – What are some of your favorite childhood books? We collect books for children ages 0-10, so donate any lightly used or new books that we can include in packages! We put at least one book in each child’s package; whenever possible, we include a book written about tubies! We have a “Sponsor a Tubie Book” list on amazon that has books written specifically for/about tubies! That is linked here!

Like buddies, the books on this list can be such fabulous tools for kids to learn about feeding tubes and alternative feeding! They help explain the “why” and “how” in a non-scary way that helps kids feel a lot more comfortable with the tubes, both tubie and kids who are siblings or children of a tubie, classmates, friends, etc. 

Both toys and books are a way kids learn about the world and normalize, so reading about feeding tubes with young kids can make them into something they are aware of, have a basic understanding of, and don’t consider to be icky or scary or weird. How cool is that? Kids are truly incredible in how open they are to learning and how ready they are to accept new, different things if we make them open and available to them. 

BUTTON BUDDIES – We are always looking for stuffed animals to use to create our Button Buddies! We do accept lightly used bears if they are in great shape and haven’t been kept in bed with you or chewed on by babies or dogs, etc. We also have a wishlist on Amazon that has lots of fabulous options that can be sent directly to us! 

Button buddies are a tubie’s best friend. They are a learning tool for newbies and fabulous for showing children how to care for a tube, to show they are not scary or bad, they are just another way to eat! We encourage parents with young tubies to use button buddies as a tool to normalize the feeding tube for the tubie as well as their friends, siblings, and classmates. Books and buddies are a huge gift to a newbie, they truly bring light to their eyes and joy to their faces. 

Buddies are also a comfort when you are admitted, traveling long distances to see doctors, and having infusions or shots or any type of treatment! No matter the age, having a buddy can bring some comfort, and any amount of comfort or joy you can bring into such a serious and scary situation is a huge deal.

You now have the opportunity to sponsor a buddy! Simply purchase a stuffed animal from our wishlist on amazon (or anywhere else) and it will be sent straight to us where we will create the button buddy! Make sure to add in a note with your name and contact information so we can send you a photo of the buddy you sponsored and who it went to! 

We include Button Buddies in as many packages as possible, and thanks to both AMT Medical Supply & ESutures we are able to create & send these to so many more tubies! We couldn’t do that without their generosity. 

Thank you to everyone who reads, shares, and donates to our efforts. You are all making a difference for someone who’s is in need of happy mail and love, so you can feel good about that. Sometimes giving feels even better than getting, and I can guarantee that this is one of those times 🙂

Button Buddies

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.

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

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….

 

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

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, glasses, even diabetic kits and dolls who are beautifully bald, but feeding tubes? No. Those are still something that doesn’t even cross most people’s mind’s – and that is why I’m here.

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. 

Button buddies allow children to be involved in as much of their loved one’s journey as possible in a way that helps them grow and understand the unknowns and the things they may be fearful of in the beginning. For instance, if the buddy goes to a child with a parent who is a tubie, the child can watch while their mom/dad is “eating” or doing fluids or changing the dressing and the child can use the buddy to do these tasks 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.

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 beauty behind playing with these toys is that there is no recognition of the differences in toys, there’s no judgment, no prejudice, simply children playing together, learning as they go, growing, and that in turn becomes them accepting of one another with no qualifications, no recognition of the differences, just as they saw 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 with a very expensive piece of plastic in its tummy changes how even the “littles” themselves see the feeding tubes! 

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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.

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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

 

Strength for All; A NTCP Shirt Fundraiser

In October of 2017 I had my GJtube surgically changed into two separate tubes – a jtube and a gtube – after months of tube trouble due to my severe dysmotility throughout my GI tract. This surgery was insanely painful due to complications brought on due to my EDS, so my recovery was long painful, and during that time I relied on my parents for EVERYTHING. I couldn’t sit up in bed on my own, couldn’t walk, shower, brush my hair, or seemingly do anything else because all of these movements require abdominal contractions/tension and every time that happened I was in excruciating pain.

It was during that time that I began thinking about how lucky I was to have my 24/7 support team who were there for me always, no matter what, no complaining, and I just couldn’t bear the thought of anyone going through this alone, so I decided to be there for every tubie I could. Chronic illnesses are one of those “find out who your real friends are” situations and it can be brutal and shocking seeing who it is who puts the effort in, my goal is to step up and be that person when I can, but also to encourage others to do the same; so two years and lots of work later, over 300 packages have been sent out to first time tubies. 

To celebrate this milestone we’ve started a shirt fundraiser to raise money to contribute to Newbie Tubie Care Packages! 

Living with chronic illnesses or other conditions that cause one to be unable to eat enough to sustain themselves on their own and cause the need for a feeding tube is incredibly challenging, and that’s a massive understatement. Imagine life without your favorite foods , without the ability to go out for ice cream or coffee or a drink with friends, not sitting around the table and eating thanksgiving with your loved ones, having to come up with options not involving food for social gatherings or first dates, and explaining to people why you aren’t eating or what that little knobby thing on your tummy is.

Feeding tubes require incredible strength and self awareness, they are life changing, but they are nothing to be ashamed of, they are a gift that gives life back to more people than you would ever imagine – young and old, boys and girls, and due to so many different causes or conditions, feeding tubes are so much more than just a life sustaining piece of plastic, so join us in spreading awareness and celebrating year 2 of Newbie Tubies as well as the gift that so many of us are given through feeding tubes – the gift of nutrition, energy, and a life we may not have had without them.

Whether you’re a tubie or not, purchasing a shirt shows your support and love for tubies and contributes to our care package program that sends packages (free of cost) to first time tubies. No matter where your strength comes from, these shirts represent that strength.

We run on donations and these shirts are super cute, so it’s a win-win! You do not have to be a tubie to be Tubie Strong!  Purchase a shirt for yourself and wear it proudly, no shame, just strength and power in your self and appreciation for the gifts we often take for granted.

Thank you so much <3

*Link below! Currently open until Nov. 21st.*

**SHOP HERE!**

you can also donate to PayPal @ rajinone@aol.com or check out or wishlists on Amazon or Etsy!

Love & Gratitude,

Positively Rachel

Newbie Tubies turns Two!

In November we will hit our 2 year mark, I cannot believe it! We will also have sent out OVER THREE HUNDRED PACKAGES at that time! We have already had over 300 applications sent in and have filled at least 75% of those, how incredible is that? 

Unfortunately right now, Newbie Tubies has no remaining funds for shipping boxes or purchasing the extra items that aren’t donated, so in order to continue as we hope to, we need YOUR help to get there. 

We’ve had some incredibly generous donors who send us tubie pads, heating pads, supply bags, and other tubie products and we have shopping lists for amazon and etsy for easy online shopping as well as shopping guides for inexpensive items from target, walmart, & fabulous dollar store finds, but none of that covers the $14 shipping cost that each box costs, and I simply can’t afford to pay out of pocket for any more boxes.

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There are so many ways we can raise money, but I cannot do it alone! 

ALL of my artwork profits go towards shipping costs, so check out the shopping site as well as my facebook page to see the artwork that is available and supports this project! There are also vinyl bags, shirts, onesies, and decals that are made to support the project as well! I take commission for both paintings and vinyl so email me or message me if you have an order!

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True amazement and joy when the littles get a buddy, this single toy helps them feel confident and less “different” from others.

We hope to do a shirt fundraiser, so keep an eye out for that as well as for an upcoming raffle! Share our page and these posts so we can get as much attention as possible, every tiny bit helps.

If you are a recipient of a package share a post about what Newbie Tubies means to you, how it helped you and why it’s a cause to donate to. Hearing personal testimomy about what we do and why and first hand experience about the impact it makes can go far, so share that on your social media pages, email it to your doctors or family members and have them share it – let’s MAKE THIS HAPPEN TOGETHER! 

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My first package sent! Now I’ve sent over 20!

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A newbie tube with her matching, tube fed hedgehog!

I hate asking for monetary donations, but right now, I have to do so if I want to send out any more packages. If you have fundraising ideas or are interested in helping out in any way, I’m all ears. 

Thank you so much for reading, sharing, and helping in any way you can. We truly appreciate every one of you and you are making a difference for so many.

 

 

Information for donating and contact information:

Amazon wishlist: https://www.amazon.com/hz/wishlist/ls/1J7LHVRD4V3A6?ref_=wl_share

Paypal: rajinone@aol.com

Facebook: Newbie Tubie Care Packages // Positively Rachel

IG: newbietubies // positivelyrachels_art

Email: positivelyrachel101@gmail.com

 

Medical Trauma: A Special Guest

Medical trauma and medical PTSD are two of the most under-identified and misunderstood occurrences in today’s medical system, even in our own developed, educated country. Doctors are supposed to be trustworthy and well intentioned, they even take a vow to do no harm. From day one we are taught to put trust in doctors, nurses, and any other medical professional, trust them with our personal thoughts, habits, and of course our bodies,  our minds; hospitals and doctors offices are supposed to be “safe zones” if we need help… but is this always the case?

From my years of battling chronic illnesses I’ve seen TONS of doctors, specialists, nurses, xray techs, med students, etc. and it’s shocking how some of them treat patients. I can give you handfuls of personal experience with negligence, betrayal, false accusations and biases, and personal traumatic experiences brought on by the medical systems, doctors and nurses themselves. I’ve gotten to a point where I have anxiety over  new doctors, a true fear of admissions to the hospitals who are said to be there for treatment, help, healing. I’ve been denied medical treatments by insurance agents who don’t even have a degree in medicine or pharmacology, but choose money over my quality of life. There’s so much more to the medical system than the average person imagines.

To share another perspective, I’ve been given permission to quote the testimony of one of the kindest, most respectful and compassionate fellow “spoonies” that I have gotten to know thanks to online networks that let us find one another with just a hashtag.

So, thank you Nicole, and here we go…

“Ever since I started struggling more and more with my medical trauma and also was recently officially diagnosed with medical PTSD so I wanted to spread awareness about how traumatic this chronic life can be. From doctors treating you badly, to traumatic surgeries or procedures to doctors not believing you to life threatening situations there are unfortunately many possible traumatic parts of being sick and/or disabled and it needs to be talked about more.

Vivid nightmares. Anxiety and panic attacks. Depression. Avoidance. Flashbacks and intrusive memories. Always on guard. Easily startled. Trouble experiencing positive emotions. Loss of interest in things that you enjoy. Trouble sleeping and concentrating. Irritability. Guilt.

These are just some of the things that come along with medical trauma or PTSD.

Unlike with some other types of trauma, for us who are complex chronically ill and/or disabled patients we literally cannot avoid our trauma.  We cannot avoid hospitals, doctors, medications, treatments, surgeries, etc. This makes coping with and healing from medical trauma very very challenging. For me even little things like doing my daily line and tube care can bring on flashbacks of sepsis hospitalizations and awake, painful IR procedures and things like new patient appointments can bring on severe anxiety about possibly not being believed. This can cause us to generalize all our trauma and have anxiety and PTSD symptoms around everything medical not just the traumatic event/s. For me I get awful anxiety when I have any kind of medical appointment due to the trauma being brought back through intrusive memories, feeling unsafe and a strong urge to run/get home ASAP, agitation, impatience, feeling like I may literally explode from anxiety and panic and much more.

All trauma, no matter what it is or how severe, is real, valid, important and is deserving of healing, therapy, support, treatment etc.

Medical Trauma and medical PTSD needs more awareness so doctors, nurses, medical professionals etc can be aware that it exists, that is a huge struggle for the patients that deal with it every single day, and learn how to help it and do everything they can to try to prevent it.

We have to strive to make healthcare *Human*Care so that medical trauma and PTSD stops for good and no one else ever has to go through such a horrific condition again! Maybe if medical professionals treated us as actual HUMANS – not just another medical case – many of these traumatic situations could be avoided.”

Quote by Nicole P // IG @itsapotsielifeforme

 Sadly, Nicole and I are not the only ones dealing with this. I think you would be amazed at how many chronic illness patients have experienced some form of trauma through the medical system.

I just recently had another experience with a doctor I have been seeing for years and had developed a good relationship with when out of the blue he lied to me and denied me the treatment I have been on, when out of nowhere he decided to put blame on an innocent party and deny me relief. How could someone let someone suffer when he had the ability to help, to help me have some relief from pain? Does that seem helpful or harmful?

Not only has he stolen my pain relief, but he has stolen my faith in him and triggered my anxieties and fears from past trauma and past doubters. Do I not deserve to live to my fullest potential? Why would one human – who took an oath to do no harm, to help patients in any way possible – leave another human suffering, by choice?

If you are a patient who has experienced something like this or any other medical trauma or neglect or malpractice, share your story with me and I will share it on my blog & on my social media pages – let’s bring light to this issue.

For more details just message me!

Thanks to my readers for reading and taking time to be aware. Keep an eye out for more to come✨

Positively Rachel

 

Mindful Impact

Mindfulness. It is just amazing how big of an impact our thoughts can have on our bodies, on our ability to heal. It’s important that you fill your mind with optimistic or positive, healthy thoughts and your life with all of the things that have always brought you joy, all of your hobbies, and the people who put a smile on your face.

Today’s technologies allow for incredible connections; there is a huge online presence of “spoonies” (as we call ourselves) all over instagram and facebook, both individual pages and group pages! This resource is a HUGE gift to those of us who suffer from severe illnesses that leave us homebound or bed bound with little to no social interaction, but there are cons to this as well.

When you surround yourself with individuals who are sick, and you are sick and have been for a long time, it begins to feel normal. You start to forget what it feels like to be healthy, to be a functional, productive person. When you start to feel that way you know it’s time to reevaluate your perspective, remind yourself of what makes you feel like YOU. Not sick you, not healthy you, but YOU.

Be mindful, know your limits physically and mentally. Will all of these posts from other sick chicks –  some of them trending towards competitive over who is worse off, some who seem to thrive off of the attention from being sick – make you focus too much on the sickness? Does life revolve around illness? Because it doesn’t have to; no matter how sick you are, you are more than your illness.

There’s a lot more to mindfulness than this, but it’s a start. I encourage you all to focus not on your illnesses, not on symptoms and treatments and bad doctor visits, not of scary unknowns and dooming diagnoses, but on all of the aspects of your life that were there before illnesses, that exist independently from illness, that bring you simple pleasure, joy, distraction, love. Positivity. Light.

Sponsor a Book for our Little Tubies

I grew up with two early childhood educators, so books have been a staple for me since day 1, and that is a true gift my parents gave me. Books help us learn about the world in a fun, visual, and age-appropriate /understandable way, teachings us the simplest of things like letters and animals to right and wrong, to all you can do when you grow up, and how to be the best YOU that YOU can be, whatever that means.

Books are part of what help us learn about new and different things we may come across, and it’s important to give children resources to help them be aware of all of life’s diversities and that being unique is never something to be ashamed of, so authors include all sorts of characters and situations in books that help prepare kids for life, even if the kids think it’s all just a story…. What about books for kids with illnesses? Children with wheel chairs, bald heads, or feeding tubes?

When I started Newbie Tubies I had a goal to help all of my “newbies” have all of the important information and to feel as supported as possible, and to learn love and acceptance for their new gadget and for themselves. Some people have a harder time than others with this, and that is completely fine, but sometimes you need to let those around you help you get to that point by letting them support you and accept you and your tube for you to see that your tube doesn’t change you, it just keeps you around…

Well, back to books, sometimes it can be hard for our littler tubies to adjust when they go to school and all of a sudden are thrown into a world where peers are eating lunch and bringing in cupcakes for birthdays and you’re no longer in the safety of your home, but both tubie and classmates start to see differences, even at a young, young age, and it’s time to bring in the books to help normalize tubes, to make all of the classmates learn through the avenue they know best – books.

For the same reasons, picture books about tubes can also be very beneficial for adult tubies who have young children or work with young children. Visual, audio, and hands on awareness and normalization is more than we can ask for, and starting young, starting by reading these books to the next generation is just awesome.

If you’re interested in sponsoring a book for our packages, we include one in each package we send to our little tubies and we appreciate every donation! I’m attaching the link as well as the list, so if you have a tubie of your own and want to buy a book, there are quite a few great options!

Our “Sponsor a Tubie Book” wish list on Amazon carries some FABULOUS tubie books for our young tubies! Click HERE to go straight to the list, the names of our most used books are listed below in case you shop elsewhere 🙂

 

BOOKS!

“The Adventures of Team Super Tubie”

Kristin Meyer

“Tubie Kids Like Me”

Annette Fournier

“When My Brother Got a G-Tube”

Jordan Tarbutton

“My Belly has Two Buttons: A Tubie Story

Meikele Lee

“Emma’s Special Tummy”

Paula

 

My Tubey Series by Rhiannon Merritt-Rubadue (full series on amazon!)

“My Tubey Goes to School:  A My Tubey Book”

Rhiannon Merritt-Rubadue

“There’s More Than One Way to Eat: A my Tubey Book”

Rhiannon Merritt-Rubadue

“My Tubey: A Day in the Life of a Tube Fed Girl”

Rhiannon Merritt-Rubadue

“My Tubey: A Day in the Life of a Tube Fed Boy”

Rhiannon Merritt-Rubadue

The Gift of Normalcy

I had a fabulous childhood; I was loved unconditionally, I was supported by my parents in everything I did, and I never felt alone or scared or underappreciated, I always had everything I needed and 99% of the things I wanted 😉 My parents always encouraged me to try new things and find whatever it is that makes me happy.

I’d always been a small town girl, good student, decent athlete, volunteer, etc.; Well, I wanted to be more than just “normal,” more than just small town, so I thought going away for school or finding a job that could set me up for working outside of my hometown & granting me the (financial) freedom to live a lifestyle that I thought was important to me might be my answer.

Like most kids – at least I hope it is this way for most – I was always told I could do anything, be anything or anyone I wanted to be when I grew up, and I embraced that thought and always dreamt about what I wanted in years to come. At 3rd grade I wanted to be a writer, then a cook. In middle school it was a lawyer, then an FBI agent or a behavioral analyst like those on Criminal Minds, and finally, by college, I wanted to be a behavioral therapist focused on autism.

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Did I mention my gift for style?

After falling ill and having two severe “flare ups,” the second of which never passed, has guided me into a whole new set of goals for my lifestyle. Instead of searching for my door to an extraordinary life full of adventure and expensive brands of clothes or my dream car – red convertible incase you’re wondering – I want to focus on something so simple – I want to find my happy, I want to make the most of my NOW, and that’s not money or material, that’s my people, my dogs, my artwork, my small adventures just driving a mile to see the dam in different seasons or try to see the eagles nesting, the bears someone spotted down the road, or just the ice on the trees or the flooding over the bridges.

I went from planning every part of my future and searching for all things perfect to searching for all things normal.

I want to be able to enjoy all of the small things, I want to be able to say yes every time I’m invited to go out with my sisters, I want to be able to make new friends who I can say yes to when I’m invited out …

Hell, I’m not even asking to be able to eat or drink a coffee or a martini, I just wanna go.

 

Chronic illnesses leave you with so little control, losing your ability to make all of the small, simple decisions that most people don’t have to think twice about can be an incredibly difficult thing to adjust to!

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Part of this adjustment is that severe chronic illnesses require just about 24/7 care, as an adult, so alongside the control, you lose any and all modesty and privacy you had left. For an introvert like myself, that’s no easy feat to come to terms with. I’ve never liked being the center of attention, & being sick is not a super easy situation to deal with when you’re shy, I mean just having people ask me how I am all the time has been tough, it’s a balance of how much to share.

It’s a quick second to think through — who is asking, do I know them? Do they know my story or are they just asking b/c that’s how you greet people? Do they want a real answer or are they being polite?

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I started this blog to help update people on my own health, but also to spread awareness so that people know how to handle situations like this, and I hope it is helpful for other spoonies but also for care takers and loved ones who are looking for help and advice so feel confident in your ability to support your loved one during their journey.

I sometimes get an urge to do something that normal people my age should be doing, and sometimes it might be a push for me, maybe even a risk, but sometimes a girls gotta do what a girls gotta do.

These times are those in which I don’t need questioning, doubt, or guidance. I don’t need it and I don’t want it, I just want support, I want love, I want encouragement. I want you to be happy that I am doing something that will make me happy, and we can deal with the repercussions as we go 😉

So, what’s the greatest gift you can give me? The best way to talk to me, best way to treat me?

Treat me like you would treat anyone else.

I can’t speak for every spoonie/tubie personally, but I know that personally, but learning how quickly things can change, how abruptly you can lose the ability to do your favorite things, eat your favorite foods, go out and take advantage of your youth, or even just care for yourself you often reevaluate your perspective and priorities.

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When you hear my name, I don’t want you to think of “oh that poor sick girl,” or “oh what a shame, she was doing great things.” When you hear my name, I want you to think, Rachel, Rachel is going to do great things, Rachel is fun, Rachel is creative, and Rachel is making a difference for others. Rachel is sick, but Rachel is capable. I’m tube fed, IV saline dependent, and I use a wheelchair, but I am ABLE to be me. I have good days, I have motivation, I have goals, dreams, hope, and feelings. I’m just like you, but I have a whole different, deeper understanding a perspective.

I don’t need to do everything in the biggest, grandest way. I don’t need to make a ton of money or have the biggest group of friends. I don’t feel a need to stick out or be recognized as anything more than just being me. Being Rachel.

The Rarest of Guest Bloggers: SMA Syndrome

My name is Danielle and I am 26 years old. Growing up I suffered with ongoing stomach issues and doctors just couldn’t seem to figure out a cause. These symptoms would come and go in waves and there were even periods of time where I would begin thinking I was doing okay! Sadly, those times were short lived and when my senior year of college came about, things took a turn for the worst.

In 2015, I became very ill. It began with my endometriosis creeping back in and that was followed with my gallbladder needing to be removed, and despite those things, I continued to progressively get worse – especially stomach wise. I was having severe abdominal pain when I ate, nausea, vomiting, early satiety (I would take a few bites of food and feel overly full instantly), bloating and weight loss. I was only 105 lbs to begin with so I didn’t have any weight to lose so things became critical rather quickly.

In February of 2016 I was hospitalized because at this point I was not able to keep anything down, not even water. I had dropped to 90 lbs rather quickly and we were very scared. My doctor had run so many tests but could not figure out what was wrong with me, until he happened to be in the right place at the right time. He was at clinic where he overheard a nurse, who isn’t typically at that clinic, talking about another girl who had just been diagnosed with this rare condition. He immediately thought it sounded very similar to me so as soon as he was done at clinic, he came directly to the hospital and went to the radiologist. He told the radiologist to relook at one of my CT scans but from a different angle.

They immediately saw the problem and he came up to my room where he finally looked at me and said “I figured out what is wrong with you. You have SMA Syndrome,” otherwise known as Superior Mesenteric Artery Syndrome.

This condition, SMAS, I’ve never heard of it, I don’t know what is hitting me and how it is going to change things, what my life will look like now, all I know is it is rare, and though it has terrible symptoms, it can be very hard to detect. I had numerous CT scans but until they specifically looked for the compression itself, they were missing it on my scans for the longest time even though it was right there. The compression can be seen on CT scans, angiograms and upper GI studies with barium.

SMAS is an extremely rare and potentially life threatening stomach condition in which the third portion of your small intestine (duodenum) becomes compressed between your abdominal aorta and Superior Mesenteric Artery.

In other words, part of your small intestine becomes crushed and food is not able to pass through, creating a blockage.

This can lead to severe malnutrition, sometimes resulting in death. The mortality rate for SMA Syndrome is so high (1 in 3) because it is so rare and often times there is a delay in diagnosis. As you can see from my story, I was extremely lucky that he found it when he did or otherwise I might not have been here typing this today.

So how is SMAS treated? There is no cure.

There are also 2 types of this condition. One being acute onset, caused by extreme/sudden weight loss often following something like scoliosis surgery. The other being chronic, meaning it develops over the course of their lifetime. Surgery can be done to relieve the compression, or sometimes gaining weight (usually via feeding tubes) can also relieve the compression and allow food to start passing through again. However the damage done before it is found cannot be reversed and often times the symptoms can still remain even after surgery or weight gain, which is why there is technically no cure. In acute cases, the prognosis is better and oftentimes weight gain is enough to correct it and relieve the symptoms.

Chronic cases are a bit different, these cases are where the symptoms can still remain even after medical intervention, they aren’t easily treatable and there is absolutely no cure. That was the case for me. As soon as I was diagnosed I was immediately put on TPN (total parenteral nutrition) to help get me stable enough and I had surgery within 3 weeks. Since then, I have continued to have an avalanche of problems and my symptoms have remained. I continue to have pain with eating, nausea, vomiting, bloating and severe motility issues. The damage done to my body from SMA Syndrome has caused the entire rest of my GI tract to slow down and not function properly, so I have developed other chronic motility issues from it as well (such as Gastroparesis and intestinal dysmotility), which sadly is often the case for many people diagnosed with SMAS.

After numerous attempts to try and get things under control, I had to get a feeding tube placed in my abdomen to help give me the vital nutrition I need to sustain myself. I had a surgical GJ tube placed a year ago. I also am currently on TPN through a central line (port) in my chest due to the severity of my motility issues at the moment and not being able to tolerate my tube feeds right now. So often times feedings tubes are needed even after surgery to help manage the symptoms that remain and to help sustain individuals with SMA Syndrome.

Getting a feeding tube can be very overwhelming. It isn’t easy to process what it is like to have a tube surgically implanted into your body and it is a huge adjustment.

But what made the transition easier for me when I had my surgery was Newbie Tubies. I came across Newbie Tubies on instagram (@newbietubies) and saw that they create packages for people who are getting feeding tubes that are filled with all sorts of awesome things to help someone recover from the procedure and different items for the new tube as well.

The goal is to make the transition easier for someone by sending them a package to brighten their day. You can apply yourself or you can nominate someone to receive a package.

 

When I recieved my package it had things such as a blanket, water bottle, socks, handmade heating pad, tubie pads to decorate and protect the tube, bath bombs and a coloring book. It also included a list of tips for living with a feeding tube for those who are getting their first tube. Also, everything was donut and dog themed to fit my personality, which can be noted on the application to make each package more personalized to the recipient.

I cannot express how much receiving that package meant to me when I returned home from the hospital and how much it lifted my spirits. Newbie Tubies is truly amazing and it is creating an awesome community of fellow “tubies” on social media. It is awesome to be able to connect to others who have feeding tubes as well because you can relate to them and also share tips and tricks with each other to help make living with a feeding tube more manageable.

So if you have a feeding tube, are getting one or know someone with one please go check out Newbie Tubies on instagram. Or even if you just want to help, you can donate money or items to go in the packages sent out. So please check it out!
I share my story and my experiences with SMAS with hope that it will help someone else find their diagnosis and know they aren’t alone in this journey. It can be incredibly hard finding any answers, and I know that if it weren’t for individuals working to spread awareness through social medias and the stories others have shared, I wouldn’t have been diagnosed, I would have continued suffering without answers for much longer.

SMAS is an extremely rare condition, and because of how rare it is it is and due to overlaps with symptoms of many other stomach conditions, it often isn’t thought of. Not a lot of doctors know much about this rare disease, most of the time they have only read about it in textbooks during medical school, but each patient, each case, is unique and complex, not one fitting the case studies or textbooks perfectly.

I had no idea what it was until I was diagnosed, so I hope that reading my story can help someone else out there and just educate more people about this condition. For more information about SMA Syndrome, you can go to https://rarediseases.info.nih.gov/diseases/7712/superior-mesenteric-artery-syndrome.

 

Post by Dani Fantaskey — guest blogger and newbie tubie package recipient


 

Thank you Dani!! Your post is fabulous and I am SO glad your package made such an impact on you – seeing your positive remarks truly inspires me to keep working hard to individualize each package. I love doing it, so I’m glad it doesn’t go unnoticed 🙂 So happy to have you, keep in touch and I’d love to have you back involved with the project anytime! Lots of love!

If anyone has questions or comments for her, comment below or contact me and I will get you in touch with her 🙂

xoxo

Rachel

Chronic Illness Dictionary

New to the spoonie life? Are you the patient or a loved one/caretaker/friend trying to support a spoonie? We have a lot of chronic illness “lingo” that can be confusing to the “real world,” so I decided to create this list to help get some of these out there and easy to find 🙂 This list contains many of the common words and acronyms you will come across  but I’m sure I’m missing something! If you have other words/acronyms I missed, comment and I’ll add them in! I plan to do so as things pop into my mind, as well 🙂

And off we go!

  1. “Spoonie”- chronic illness patient; a term based on @TheSpoonTheory that aims to explain the level of fatigue we face as well as what simple, daily tasks can take so much energy from a “spoonie.”
  2. “Tubie” – a term used in the chronic illness world to talk about individuals who are tube fed; not an insult, we use it about ourselves and one another all the time.
  3. “Stoma” – the tube site, the area on your outer abdomen where the tube enters, and is used to keep it clean and comfortable as much as possible.
  4. “Feeds” – formula that goes through the feeding tube to sustain and nourish patients; “Time for feeds” is like “Time for supper!” except a lot less fun.
  5. Tubie Pads: similar to gauze but much cuter, used to help keep the tube site clean, healthy, and CUTE 😉

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Tubie pads donated by some of our VIP donors : @newbietubies @turkeytotcustoms @HomemadeTubieHappiness @DorkyLittleEtsyStore

  1. “Vent” – if you have a feeding tube that is in your stomach (gtube/gjtube/NG tube) you can “vent” it if you are nauseous or have air stuck in your gut (which doesn’t move). It is often done with a drain bag for gravity or a syringe for suction, which requires more caution – ick!
  2. A cental line ( hickman or port, picc line) – essentially a long term IV that is placed into a large blood vessel near the center of the body most often through your chest and ending at the heart; used for IV treatments like chemo or IVIG, TPN, medications, IV hydration, etc.
  3. Brain fog – cognitive dysfunction that comes with conditions like dysautonomia, ehlers danlos syndrome, fibromyalgia, etc. and causes severe problems with word finding, on the spot thought processing, short term memory problems and sometimes long term as well, lack of mental clarity and trouble holding conversations, etc. // People often say they feel that way too, that it’s normal when you’re tired, it happens as you age, etc., but if you felt the fog we feel as patients, you’d be very glad your fog is not what we experience.
  4. Motility (GI) – movement of the digestive system and its ability to move anything in there along with it throughout the GI tract. When there isn’t proper movement, undesirable symptoms can come up and you can be at risk for conditions like gastroparesis. Gastroenterologists who specialize in these conditions are called “motility specialists.”
  5. Flip/flipped – if you have a GJ tube  you can experience a “flipped” tube, this is when the j-arm comes up from the intestine and into the stomach, where it doesn’t belong. To fix this you have to have it rewired in IR.
  6. Tubie Friend” – a stuffed animal or a doll with medical devices to match your own, so feeding tubes, central lines, oxygen mask, etc.; these are incredibly comforting and meaningful for all ages.
  7. “Button tube” – low profile feeding tubes have an extension that can be removed, leaving only the “button” when you’re not using it! The other surgical tubes don’t have that option, and we usually call them “dangler” tubes or catheter tubes.26610760_10211000346221389_75216378_o.jpg

13. “leaker” – individuals with cerebrospinal fluid leaks

14. Zebra – a zebra is representative of rare diseases, sometimes patients refer to themselves and others with such conditions as zebras themselves

Acronyms you may come across:

NTCP: Newbie Tubie Care Packages

NP: Nurse Practitioner

PCP: Primary Care Physician

GP: Gastroparesis

EDS: Ehlers Danols Syndrome

POTS: Postural Orthostatic Tachycardia Syndrome; a type of Dysautonomia

MCAS: Mast Cell Activation Syndrome

NPO: nothing by mouth, long term or short term, often just 24hrs/overnight before surgery or certain procedures such as tube replacements, or even for fasting blood work

TPN: total parenteral nutrition, nourishment coming straight from an IV bag into your central line in order to stay nourished; can be short term or long term and is used as a last resort for dysmotility/gastroparesis patients who can no longer tolerate oral intake or feeds into the jejunum.

 

Types of Tubes:

GJTube: through your stomach and into the intestines; has access to both stomch and intestines

Jtube: a feeding tube that enters straight into the intestine; most complex and serious surgery out of the 3 surgical options, mostly used for those of us with severe dysmotility not just in the stomach, but also through the lower GI tract – small and large intestines/colon/etc. – and hence cannot keep the j-arm of a GJ tube “down” due to the lack of movement/pull.

Gtube: a tube through the abdomen and into the stomach directly, no lower access

NJ/NG: tubes going through the nose instead of the gut; usually used for short-terTm help for babies, individuals hospitalized, etc. or trials for feeds before surgery for G/J/GJ surgery.

 

*If you have any suggestions for words/phrases I should add, let me know- I’m always happy to have opinions from others 🙂 *

xoxo

Rachel