Pig With a Purpose: The True Value of Pocket Change


One of my favorite and earliest childhood memories is how my dad would come home from work every day and empty his pocket change into this big, clear jar on his dresser. Slowly, that jar would fill up &  and when it started to get near empty-ing time (hardly ever did we wait till it was actually FULL), my sisters and I would add in any change from our (sad) little piggy banks and the fun began! 

For awhile we put the coins into wrappers, we learned to sort them, count them, and break them up into equal piles once they were sorted by coin type, it was a fun learning task, a fun thing we did together. After sorting we would all go to the bank and get cash. Later on, though, we found a magical new way to do things…

Suddenly we could pour the change into the AMAZING coin eating machine! This magical being somehow counted our coins and spit out a receipt that dad gave to the bank tellers and in return, they gave us… CASH!! WOOHOO! 

My dad would give each of us girls part of the pot – sometimes it was more, sometimes less. Sometimes more pennies, sometimes more quarters. Either way, we each got some money and that was so exciting. But we would also talk about how some people don’t have as much as we do, some kids don’t ever get $5,$10,$20, they don’t even get new toys or special ice cream treats or in the worst situation we could imagine the kids didn’t even have 3 meals a day or a house with enough rooms for everyone, enough beds, or heat during the winter.

My dad often bought groceries for families in need, spent time at school checking in with the kids who lacked a healthy support system at home, and he was available around the clock, 24/7 for the staff and families that worked/attended the school where he was principal. He is truly a beloved pillar in our community. I was, and still am, always so proud of him and all he does for others; he is a true inspiration. 

So even though we wanted the money for ourselves, we learned how to be empathetic and we experienced first hand that it is a HUGE GIFT to be able to GIVE. I am so thankful to have two parents who instilled this in us just by being them, just by showing  it in their day to day actions and words. They never ask for more, never complain or want, they give all they can and sometimes maybe more than that. 

I can only hope that I will be able to do so much good for others with no underlying goal for approval or recognition, simply b/c we are inspired and driven to do so. 

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If you and/or your children have a piggy bank that is awesome, if you do not have one but would like to start one, I absolutely encourage you to do so. Whether you donate or keep the funds to yourself it is a fabulous way for kids to learn about money, learn about money management or how to spend some save some, or how to be generous and donate!

If you want to donate, I can recommend a fabulous cause 😉

If your child would be interested in helping create a package for a young newbie tubie around their age they can sponsor a Newbie Tubie Care Package!

You can do this through a monetary donation or you can purchase the items to put together a package for a specific tubie based on their age & interests!

We have online wishlists via Etsy & Amazon – book wishlists, button buddy wishlists (purchase an animal for me to create a button buddy – animal with matching feeding tube), tubie essentials on Etsy, and then we have shopping guides to tell you what we include in each package, that way you have a guide to follow as you shop in person or online!

It’s an incredible gift and it means so much to our tubies, young or older, to know someone put these items together specially for them! It’s also a great experience for gift GIVER. Learning early on how great it feels to GIVE is an invaluable lesson that no amount of rolled up pennies, or even quarters, could buy, it is a “live it to learn it lesson.”

We have lots of young children & young adult tubies (mostly ranging from ages 0-36, but also older tubies) so sponsoring NewbieTubies of any age (child or adult) is welcome and SO meaningful, truly SO appreciated! You can make anonymous donations, sponsor anonymously, or you can send a card with your info so that the tubie you sponsored can get in touch if they want to do so!

I will link our wishlists and provide contact info so you can let us know if you have any questions or want to get involved in any way aside from making a donation.

Thanks for reading and share if you can! 

ETSY MUST HAVES: 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 : 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

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: One fun way to get involved is to sponsor a button buddy! All you have to do is pick out a special stuffed animal we can use to create a ButtonBuddy for a special newbie

You can purchase a buddy online & add a note so we know who it is from, can share your name with the newbie (if you’d like), & can 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

Another fantastic donation option is purchasing a tubie-geared children’s book!

Whether they are for little tubies, little ones who have a parent, sibling, or friend with a feeding tube, or for a tubie to share with their classmates, youth groups, sports teams, etc to help normalize the idea of tube feeding and take away any feelings of fear or anxiety for both the tubie and their peers/loved ones, these books can bring so much joy, love, comfort, & self acceptance to a little tubie and their team.

Both toys and books are a way kids learn about the world & normalize, so reading about feeding tubes with young kids can make this incredibly foreign concept, meaning the tubes & the idea of “eating” through the tube on your belly – into something they are aware of, have a basic understanding of, and don’t consider to be icky or scary or weird. It’s just a feeding tube, it’s how some people eat, let’s go play now. How cool is that? Kids are truly incredible in how open they are to learning and how ready they are to accept new ideas, new experiences, how many different ways you can achieve the same goal. We should all be raised with open minds and warm, welcoming arms, we should all live to accept one another and our differences. Life is boring any other way.

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

Of course, monetary donations are always welcome and appreciated We are currently running on fumes fund wise, it keeps us from sending more packages out. So share our pages. Share your own story, that’s what people love to read. If we sent you a package, post about it! Did it make a difference? Share a photo, ask them to support & then share in honor of you✨

ShoppingList: NewbieTubies Supplies (forever changing inventory)

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

*BARRIER CREAMS – We need barrier creams (similar to diaper creams!) for our newbies to use – 3x antibacterial ointment and calmoseptine ex.

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

FACE MASKS/Self Pampering- (Skin care masks, not surgical/COVID masks) 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 & refreshing while recovering or admitted

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

Baby Bath & More – bath supplies, fun bath paints & crayons, fizzers, foams, etc are always great; also sponges, towels, bubble bath, and bath toys & bath books! We also use baby socks, chewies, musical fun, 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? 

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! Also on Amazon

Mini QTips- right by the mini germ x are mini qtip containers! We love these for every package so send them our way next time you see them! Also on amazon

Thank you to everyone who reads, shares, and donates to our efforts. You areall 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

 

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.

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.

Newbie Tubies Round 2

I’m so excited to start year 2 of Newbie Tubie Care Packages (NTCP), after such a successful first year, I can only imagine what 2019 is going to bring. As we begin this year, I want to update you on our progress & how you can continue to help us make this project possible.

We just had a feature in my local paper, and I’m so excited to have had that opportunity! Newbie Tubies isn’t just about packages, it’s about bringing together tubies new and “old,” and to create a space where we can learn from one another and create friendships. Newbie Tubies is also aimed towards the caregivers and loved ones of tubies or spoonies, we want to support everyone as much as we can, in any way we can, for as long as that person is around, tubie or caretaker.

To keep this project up and running I have worked endlessly to find people willing to donate to this cause, or even better, others who are as passionate as I am and are ready to be part of the NEWBIE TUBIE TEAM, and though I got turned down or ignored more times than I can count, I did find a few ladies who are a true part of the team and help whenever they can.

Most of my donors are or were sick themselves or caretakers, and that’s why they make items like tubie pads and thermo-bags for IV fluids, etc. Our donors know the importance of this project, and I am continually amazed at the empathy and support I have gotten from these individuals who I have never “met.”

That said, my 3 tubie donors and 1 heating pad donor, as incredible as they are, they’re also trying to make money from their products, many to pay medical bills. I can’t ask 4 women to donate enough for over 100 packages!

I am always looking for more individuals or groups of people who feel inclined to join Newbie Tubies and the VIP donor program, which means I do everything I can to send people in the direction of the shops who donate to us, and I post on all platforms (FB, IG, blog, twitter, in boxes, etc.) both to thank our donors, but also to “pay it forward” in the way of sending people their way.

If you ‘re interested in being involved but don’t know how to sew or aren’t crafty, I always have tasks I could use help with. We want to include as many people as we can, both on the team behind the scenes, but also for the members of our program/follow our accounts to continue to learn through blog posts and tip lists while also having a chance to interact with others who are also going through this journey.

So, I’m going to share below some of the things we need in order to keep Newbie Tubies as active as I hope to.

 

WAYS AND RESOURCES FOR GETTING INVOLVED:

DONATIONS: what we need and how you can find it

EASY OPTION!

I have multiple lists on amazon, etsy, and simply items you can find at the dollar store or the mini-item aisle at walmart while you’re grocery shopping! I try to make it very easy.

You can also purchase products like art work and vinyl products that I make but put all profits back into the project – every sale helps!!

            We also have guides and lists for what we use and where you can find it! It can be as simple as buying some extra chapstick or germ-x when you’re shopping for yourself.

Amazon link:  http://a.co/4VCstGg
http://a.co/8DNAefV

Link for Sponsoring a book for our “littlest tubies” : http://a.co/1yuuZO2

Etsy link: https://www.etsy.com/people/rsb4fc?ref=hdr

Link for “Tubie Shopping Guide”/ our shopping list: https://positivelyrachel.com/category/newbie-tubies/

Volunteer Survey:

I have so many projects I’d love to do, but I myself am a tubie and a quite sick one at that, but I do all the packing of boxes with the help of two fabulous ladies who come over almost every week to help, and from my Mom, who is also passionate about this subject. When I started the project, I never could have imagined that I would send out over 100 boxes in just a year! Because of how much NTCP grew, and how quickly, I can use help from anyone who feels called or inclined to be involved.

Specifics:   I need some individuals who are blessed with an understanding of technology, something I lack. A few examples:

  1. Etsy! Anyone up for helping me get my page set up? All profits from my sales go towards NTCP, so I would love to sell more, but I’m struggling with the technological aspect of that goal.
  2. Google Drive – I use google for most records and organizational guides/notes/etc. If you know a lot about that, that would be beneficial!
  3. Graphic design and artistic minds
  4. Social media help; posting, advertising, sharing, interacting – I would LOVE for our IG page to be more interactive, people commenting, sharing, getting to know one another, but I don’t do a great job keeping up with it and making it happen
  5. Keeping track of boxes; who got them, who didn’t, how many we do, etc.
  6. Finances and Inventory – track how many packagegs we send out but also what donations we get- money or product, as well as my own sales that go towards it, and the amount I end up spending out of pocket to complete packages

OUTREACH – looking for new donors, sharing posts, and watching for sales we would be interested in.

a. Find other blogs, pages, or articles that relate, we share them or guest post to spread awareness and find new people with their own experiences that we can learn from!

b. Watch for sales, giveaways, and new shops for donating as well as for individuals who may have extra tubes we could use for tubie animals-– often kids who don’t need them and had an extra gtube at home, and it is no longer needed, etc.

Your own PRODUCTS, what do you make? (if anything)- like tubie pads, tubie clips, other medical items, or any other “carepackage” items like bath salts, lotions, soaps, etc., we would love to hear from you!

1.Tubie pads/clips/go bags

  1. Feed Backpacks – converting kids backpacks or adult backpacks to hold tube feeds, pumps, and such.
  2. Tubie Friends: stuffed animals with tubes for little kids – two part project…
  3. Finding the tubes through hospitals, facebook, and contacting the manufacturers and seeing if they would donate any sterile tubes but ones that are either expired or have defects that make them unusable—explain what we are doing and see if they’ll send us tubes- especially button tubes of any kind, but we take anything we can get! (g, gj,j tubes more than NJ/NG.)
  4. Making them! Do you make these or know you can? That could be another upcoming thing based on donations/tubes we can acquire.

 

There are so many ways you can help this project, just sharing it and telling others about it is helpful. We are looking not for more applications – we get countless applications – but for awareness and depth and support from the “normal” world. The goal is to make this terrible thing into something slightly more tolerable through creating resources and opportunities to be yourself and feel what you need to feel, but also to learn and be prepared for all that could come your way ; I work hard to create a resource that gives you so much more than doctors or healthy individuals can.

 

Happy Feeding Tube Awareness Week and thank you for being inclined to read and learn about this fabulous project!

Willfully Determined

Yesterday I pushed myself to do more and to do different. I decided to be a 22 year old for a few hours, I just ignored the fatigue, took the pain meds, and went to back to back movies (7-11:30pm) with my sister, who didn’t think I could stay out late anymore. It was a gift to both of us to be able to spend that time together, just enjoying doing something that was so out of the norm.

Usually I sleep through 60-80% of movies anywhere we watch them, our basement, my room, the movie theater, other peoples houses… But last night I worked hard to stay awake, and I did a stellar job. My POTS/dysautonomia leaves my body unable to pump blood to my brain when I sit down for too long, so I fall asleep or pass out even if I’m loving a movie or having a great conversation with someone; but usually, if I move around or take a walk I start to feel much more human again and stay awake for at least 10-20 minutes 😉

My family asked me if I really had energy for this, and here is what I told them,

“No, I don’t have the energy, but this isn’t about energy.  This is about desire and determination.”

Sometimes I have to accept my symptoms, accept my situation, and make a choice to push past all of the exhaustion, pain, nausea, and sensitivities so that I can remind myself and those around me that I’m still me, and that there are still things out there, outside of my “safe zone” (aka my house and my room). Watching the world go on without you can be a very strange feeling, it’s like watching from an outside view, looking down on the life I thought would be mine and watching others continue on without me. The world doesn’t wait for anyone.

Recently I’ve been hearing a lot of “nothings” from doctors; some literally don’t have anything to say, don’t answer emails or calls or anything, others telling me they can’t take on my case or I’ve exhausted the options they can offer. It’s a lot of “keep you comfortable” and “manage symptoms.”

After so much of the same, I’m so tired of doctors and meds and tests or treatments that no one actually thinks will work. I want to live. I want to experience my youth, I want to really feel alive and I want to cross items off of my bucket list.

I want to travel and see incredible sites and take countless photos. I hope to visit all of the girls who I’ve met online, the ones who have helped me through these years of illness, and I want to meet new people, and fall in love. I want to get rid of these tubes so I can swim with dolphins and scuba dive, get as close to my mermaid dream as possible.

I have a lot of goals, and I may never accomplish all of them, but they make for some happy thinking & I never pass that up. 🙂

 

Newbie Tubies: How to Sponsor A Package

Time for a Newbie Tubie Update! I am so excited to share that Newbie Tubies has had a huge increase in the number of applications we have received for packages. This is fabulous news, I couldn’t be happier to have this project be so successful and to be able to help so many new tubies adjust to life with feeding tubes.

In all honesty, this huge increase in apps is also a bit overwhelming for me, as a tubie myself, being the one who goes through each application and has to approve or deny each applicant, each fellow tubie… it’s not an easy task! But when I finally get to begin picking out items and pack each package, specialized for each unique, first time tubie, I’m reminded of why this is important work, why I started this project in the first place.

Being able to do this is such a gift, it’s a gift for the tubies who receive the packages, but it also a gift to me and to anyone else who has the chance to experience what it is like to help others go through this strange and misunderstood transition.

Many people have offered support in a multitude of ways, but to share this incredible gift with more people, both tubies & “normal” /healthy people, or donors, I’ve decided to begin offering the opportunity to sponsor a tubie package. I will always take “blind” donations, but if you are interested in knowing where your money is going, or if you want to do the shopping yourself, I am so happy to share this experience with you.

I have applications for new tubies of both genders that range from ages 0-30years and sometimes older.If you’re interested in sponsoring someone close in age to you or your child, I can almost definitely find you an application that fits the bill. I will not be providing any personal information about the tubie, but I will provide a list of that individual’s interests as well as the “Tubie Shopping List” to help guide you in your shopping; you can also add in anything else that would fit in the package and make sense for your tubies age/gender.  After you shop, I would add in the tube items that you likely wouldn’t be able to get on your own as well as our tip lists, donor lists, and Newbie Tubie info before shipping it off.

This process is very similar to the angel tree or shoe box gifts you often see around Christmas time, but this is year round and a bit more specific. There will always be tubies in need of support; sadly, the medical system doesn’t always do a great job at preparing children, parents, young adults, etc. about the transition period to tube feeding or what it means long term. A lot can go unsaid which leaves a lot of room for confusion and unnecessary panic.

**With a donation of $25 or more, you are paying for shipping ($14) and helping pay for some of the extra items in the packages. $30-$45 would sponsor the whole package, all supplies and shipping.

***If you donate $25 or more, you can sponsor a package AND get a painting of your choice from the selection in this album, all of which are originals made by me, Positively Rachel’s Art.***

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I do, of course, accept monetary donations, as well; monetary donations play a vital role in covering shipping costs– each package costs $13 just to ship! So, whether it be $5 to help me buy a few new mini hand sanitizers or $50 to cover package & shipping (maybe more!), you’re helping make this project happen. For that, I am thankful, and you should feel good for helping others during a hard transitional period in their lives that (most of) you can be glad you won’t ever have to deal with. (knock on wood)

My artwork is where majority of Newbie Tubie funds come from; I sell abstract, acrylic paintings and notecards with prints of my art/photography as well as bags, onesies, shirts, and more with vinyl prints to spread awareness & raise funds! You can order my art through the blog or through private messaging (instagram, facebook, email), and I do take custom orders as well; all of my profits from the art sales go towards what supplies are not donated & shipping costs for Newbie Tubies.

The easiest way to donate or pay for paintings is through paypal (rajinone@aol.com), but I do take cash and checks as well.

This is a stellar opportunity to do something really meaningful, to pay it forward.

Help me by sharing this, if you’re a tubie/spoonie or if you’ve received one of my packages, share how the packages helped you, share a bit about the challenges or what you’ve learned in your journey.

Thank you for reading, donating/purchasing, and for supporting both the Newbie Tubie packages and my art.

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instagram: newbietubies (or) positivelyrachels_art
positivelyrachel.com


Facebook Art Sale/Sponsorship:

https://www.facebook.com/media/set/…