How and What to Donate!

 

I have created a list of some of the possible donations we could use, however there are endless options and each package is different depending on age, gender, and interests of each person!

 

Right now (Jan 17) I have an 18 year old male, a 31 year old mom with two kids under age 4, and three girls between ages 16-19 who like either blue or pink, horses or dogs, and glitter or bows.

There’s lots of differentiation, but they appreciate anything I can send them that is comfortable, tube related, age-appropriate, or simple things that relate to their interests.

 

Newbie Tubie Packages

Donations needed–

Care package items:
(Get on amazon, dollar store, Walmart/target,etc)

-Bath bombs, bath salts, natural soaps
-Self care/pampering goodies (face masks, nice body wash or lotion, dry shampoo, etc.)
-Cute hair ties, clips, headbands
-Mini lotions, germ x

-Soft blankets, socks, stuffed animals
-Coloring book/pens/colored pencils
-Small toys and goodies for kids

-Makeup sized bags (fit in purse/backpack)
-Inspirational quote books/journals
-Goal books, guided journals

Medical/health related:
(Walmart, drugstore, amazon)

-Heating pads (rice/microwave), heating stuffed animals
-pill crusher, pill splitter

Tube supplies:
(Found on Etsy, online)

-Tube clips (for long tubes)
-Cute medical masks
-Heating pads
-Tube belts
-Tubie pads

-For home made tubie friends–Unused button tubes, extensions, long tubes
-Stuffed animals

Anything else that will fit in a care package or help make a tubie feel more comfortable post-surgery/during their transition to tube feeding!

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I also accept re-gifting! If Christmas brought too many fuzzy socks and coloring books or one too many scented candle and bottle of the same old lotion, I’m happy to take anything off of your hands that you just wont use!

Spring cleaning brings about lots of unwanted (and unused) items? Donating to my project is just at meaningful as donating elsewhere! Keep it in mind for your extra, package sized goodies.

 

You also always have the option of purchasing a painting! All profits go towards shipping and shopping costs for newbie tubies!

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If you are interested in making a monetary donation, my pay pal account is: rajinone@aol.com

You can contact me at positivelyrachel101@gmail.com  if you have any questions, want to mail or drop something off, etc.
For more information about ways to help with the project or just about how it came about, please check out the blog titled “The Start of Newbie Tubies” 🙂

 

Thank you!

More Acrylic Pours For Sale!!

Passion Over Predictability

Its really easy for my mind to go towards thinking about how my illnesses have stolen any predictability about my future; how they took me out of school, have forced me to accept that I may never have my “dream” job or may not even be able to work a “real job” at all. For someone who loves to plan and always wanted to know what was next, living in such uncertainty can be daunting. I fear living a life lacking companionship and never getting to fall in love or find my true soul mate, but then I’m reminded that my illnesses have brought to light so much in myself  that I never would have discovered if I hadn’t gotten so sick in the first place.

Instead of focusing on the things I likely won’t be able to do, I’ve started to consider all that I CAN do. I’ve discovered so much about myself that I didn’t even know was there; I have new passions and I’ve discovered talents I had no idea were hidden within me until I got sick and I have a new understanding and a new level of empathy both for the people and the world around me.

Ive strengthened relationships with my loved ones and lost many people who weren’t able to stick by me through my trials, I’ve broadened my outlook and see things in such a new and brighter perspective, and I’ve found passions that give my life more meaning than just being the “sick girl,” no matter what my body has in store.

Although I can’t eat, I’ve developed a relationship with food through cooking meals for my family. I love creating new recipes and trying new techniques with home made goods. Some people are shocked by my love for cooking, but it’s something I’ve always loved and now it’s a way for me to “enjoy meals” with my family.

I’ve rekindled my passion for photography and developed a love for painting– this one I don’t think anyone would have expected. I’ve never been the artist of the family, and although I can’t draw anything, I do have an eye for color, and I’ve found some painting techniques that work for me. Because I’ve discovered these passions and because people (not just my parents 😉 ) started buying my paintings, it has given me hope that even if I can’t graduate from college or work as a full time behavioral therapist like I had hoped, maybe there’s something more out there for me.

I’m blessed to have a community here at home as well as through chronic illness support groups online that support me in every way they can. I’ve had so much support from my local community and I’m so so thankful for each and every one of you. I also have a truly amazing family that does everything from help me with medications/treatments, drive me places, and help with any other around the house/medical things I need and they also help me be able to follow my passions and set me up for success. Not everyone in my situation is so lucky.

Chronic illnesses are exhausting and isolating, they take away so many parts of our lives that we use to identify ourselves. If you’re going to survive it with some sanity, you have to make a choice to not let your illness be the only thing that defines your life– it is always part of what defines you, but if you don’t have other distractions and passions, you’ll just about lose your mind.

 

My Holiday Inspiration

I was listening to a Christmas CD tonight while I was painting and I was struck by the lyrics of one song in particular. I don’t know what everyone else thinks or feels about this season (and really any time of the year), but I’m a strong believer in the power of love and this song just really hit home for me.

The song said, “The story of hope and joy and peace…. let anger and fear and hate disappear and let there be love that lasts through the year.” (Alan Jackson- Let it be Christmas)

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Christmas Paintings!

Maybe it’s just because I’m exhausted and emotional from post surgical pain, medications/side effects, and insomnia, but this just made me stop what I was doing and really ponder and appreciate. Christmas is my favorite time of the year, but it’s not always a picture perfect holiday. We’ve dealt with years of illness, our fair share of (extended) family drama and arguments, tears on Christmas Eve, and anything else a “normal” family (hah, normal?) may see. However, in the end, we come together and we celebrate love and we spend time together and that’s what matters.

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The day after hearing that song, my good friend posted this amazing post on Facebook about love and family and again I was just struck with how much I related to that post and how again the power of love was shining through and someone else was recognizing and sharing that. I’d like to share that post with you…

” People always ask me how I stay so strong and how I’m so positive. Well, I’m not always strong and sometimes I feel like nothing will ever be okay, but I’ll let you in on a little secret. I was born into a family of warriors. After each punch life throws at us, we help each other up and we battle it together. No one fights alone and every one of us has scars of courage to prove it. At the end of the day, our love outshines any cloud of darkness. Together we can do anything through love.”
-Carolanne Monteleone

My family and I (parents and sisters) have been through hell and back just trying to stay on our feet through each “punch”, each trial we’ve been through, but the key to that is that WE go through each trial. Together. I am never alone through this long and challenging journey I am on because I know my family will never leave my side. Sadly, I am one of the lucky ones; I’ve seen first hand that not everyone, not even every family member, works that way.

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Decorated IV pole

Love is one of the most powerful emotions a person can experience. It can make you do crazy things, but it also brings about the best things in life. To love unconditionally and to be loved unconditionally is one of the best gifts you could ask for, and you rarely find that outside of your family (until you get really lucky 🙂 ).

Families should always share unconditional love– parents, spouses, siblings, grandparents, cousins, everyone included! Life is short. Life is full of ups and downs, arguments, differing opinions, heart break, annoyances, cold shoulders, and regrettable moments, but it’s also full of laughter, hugs, big smiles, great photographable moments, tons of joy, milestone moments, and most importantly… LOVE. So why do we waste so much time being angry? Holding grudges? Arguing over the past? We should be together celebrating, making memories, being joyful, sharing happiness and love.

This Christmas season I urge you to love unconditionally. Find forgiveness in your heart for those who have wronged you. Don’t ever take being treated for less than you deserve, but always remember that life is short and relationships with loved ones are precious. Let only positive thoughts into your mind and share those positive thoughts with others; always try to focus on the good, there is so much of it.

Spread love. Laugh endlessly. Find your happy and share it with your loved ones.

Happy Holidays!

The Significance of the Holiday Spirit; Spreading Love and Generosity

The holidays are my favorite time of the year. Once we pass Halloween and get close to Thanksgiving I know it’s (basically) an acceptable time to bring out all of my Christmas leggings, shirts, tubie pads, and of course the hippo who sings Christmas carols.

It’s kind of funny that this is my favorite time of the year since health wise it’s often the most challenging. I was diagnosed with gastroparesis in December of 2013; this will be my 5th year not eating a Thanksgiving meal, my 5th year without any pie or turkey, my 5th year not having any snacks or candy in my stocking, my 5th year not eating our traditional Christmas brunch, and my 5th year seriously struggling with my health during the holidays.

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Our favorite gifts… donut pillows and blankies 🙂

But really, these holidays don’t have to revolve around food. I have much more to be thankful for even without eating. I have so much beauty and love in my life and I’ve found new passions and hobbies that not only bring me joy but help distract me from pain, hunger, and other symptoms as well as from the thoughts of all that my illnesses have taken or changed in my life; I prefer to focus on all that I’ve gained, all of the positive changes, and all of the things I’ve learned about myself and about life just from becoming so sick and being homebound.

The Christmas spirit is such a beautiful thing. I’m not even sure I loved it so much before being sick, but now I appreciate it endlessly. Even for people who don’t really like Christmas or don’t celebrate it, there’s just a contagious feeling of joy, love, generosity, and comradery that we lack during the rest of the year.

As I’ve gotten older it’s become less about gifts and food (obviously #tubiereality) and more about sharing that joy and love with others as well as finding joy in giving.

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Baxter stayed up for Santa 😉

I love finding special gifts for my loved ones but also finding ways to share with the less fortunate; sometimes this means giving money or gifts, sometimes meals or just festive cookies, or othertimes it is giving other gifts that I can make like simple cards with meaningful words, a painting, or a simple necklace or bracelet that I have made. In the past we have given gifts and food to local families or children who were in need, sent boxes of gifts to children in different areas or countries, and this year I’ve started a new nonprofit called “Newbie Tubies” for other individuals who are getting feeding tubes for the first time! I’m setting up both an online wish list and will eventually be asking for monetary donations for extra supplies and shipping, but I’m also selling my paintings in hopes to raise money to send out these packages to help ease the transition for new tubies.

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Breaking out the festive tubie pads 🙂

The holidays are a beautiful and special time. It’s filled with love and joy, gatherings with friends and family, and the gift of giving. If you’re able to give, I suggest finding a way to give to someone who is in need, whether that be an individual person or a family who could use some Christmas cheer, volunteering at the food bank or soup kitchen, or donating to an organization of your choice that is donating to those in need; ‘tis the season of giving and spreading the holiday spirit. <3

Lots of love and an early wish of happy holidays! 🙂

My Art: A New Coping Mechanism

For sale or will do commission work! Email for more info!

8 Myths About Feeding Tubes

Most people will go through life without ever having to deal with a feeding tube; they won’t have one themselves nor will they have a loved one with one. However, there are over 300,000 people living in just the USA who have feeding tubes—this includes children and adults of all ages and varying conditions.

A lot of people don’t know anything about feeding tubes and some have the wrong idea about them, so as part of Feeding Tube Awareness Week, I want to clear up a few myths and give you some information about living with a feeding tube.

MYTHS ABOUT FEEDING TUBES:

  1. Feeding tubes are only given to people who are dying.

Majority of people who have feeding tubes are actually using them to survive! Our feeding tubes give us the nourishment we need to function. Yes, you often see them on TV keeping comatose patients alive until they are taken off of life support and sometimes cancer patients or high risk premies have them, but, more often than not, they are given to people who need supplemental feeding or full feeds to continue living. Some babies use them starting as newborns and are on them for their whole lives while others only need them temporarily, and some people get them later in life when a medical condition causes them to be unable to consume nutrients on their own.

  1. Feeding tubes are only for people who are underweight.

I have gastroparesis and generalized gastrointestinal dysmotility – my stomach and intestines do not process food—and yes, I am underweight. That said, some people with the same condition gain weight due to their bodies going into starvation mode and hanging onto every calorie while converting sugar and carbs into fat. You can be overweight and malnourished. That is a medical fact. There are also lots of individuals out there who have swallowing disorders, food allergies, and other conditions that make them not have enough oral intake, but again they do not necessarily have to be underweight, they may just not get in key nutrients, proteins, fiber, fats, etc. No matter what your weight, you need adequate nutrition, so yes, no matter what your weight, you can require a feeding tube when not able to intake adequate nutrition orally.

  1. When you have a feeding tube you can’t eat.

Many people who have feeding tubes are only in need of supplemental feeding, meaning they eat orally, but not enough to stay fully nourished, so they do feeds just to cover what isn’t taken in orally. You can still eat when you have a feeding tube. There are many people who have restricted diets or are only able to take in liquids and require more nutrition via tube and then there are others who cannot eat at all. Even people with gastroparesis sometimes have a “safe food” or two that they can tolerate in small amounts, or they’re able to suck on candy, drink some gingerale, etc. It doesn’t invalidate anyone’s need for a tube, each tubie and their doctor figure out the best individual plan for tubie needs.

  1. Only babies and the elderly need feeding tubes.

A lot of people think of preemies and the elderly when they think of feeding tubes. In reality, there are an endless number of conditions that can cause a temporary or permanent need for a feeding tube. Some of these conditions are prematurity or failure to thrive, neurological or neuromuscular conditions, cancer, digestive disorders (like gastroparesis), Down syndrome, swallowing conditions, eating disorders, and many more! People of all ages, genders, sizes, sexualities, races, and health histories can have feeding tubes. You can also have a tube for only a few months, a few years, or you can need one permanently. Each person’s journey is unique.

  1. Feeding tubes are a scary, bad thing.

People often think of tubes as being scary or bad, but to many of us they are what give us our life back. Being malnourished and dehydrated all the time is exhausting and dangerous, so having a feeding tube that allows you to stay nourished and get some energy and strength back is such a relief. No, it is not an easy thing and it is not what most of us want or ever imagined for ourselves, but it is a lot better than starving to death, which is what would happen to many of us (myself included) without the tubes.

  1. Feeding tubes are an easy fix.

Feeding tubes are a lot of work and they aren’t an easy answer for a lot of us. I can only speak from personal experience as someone who got her tube as a young adult with a chronic gastrointestinal condition, but my tubes have caused many trials and tears, lots of pain, and little weight gain, but I am alive and I can’t confidently say I would be here without the tubes. This past year I went from one tube (a GJ) to two separate tubes (a Jtube and a Gtube), that surgery was complicated and recovery was brutal, Ive been in immense pain for most of the last 4 months since surgery. The body doesn’t always like having foreign bodies permanently lodged into your organs.

7. Feeding tubes put an end to your symptoms

A lot of people think that once someone with a digestive condition, or other conditions that cause malnutrition, get their tubes, they start to feel automatic relief from symptoms. Tubes are incredibly helpful and they do help many people get to a point where they can function at a much more “normal” level as their nutrition and energy levels improve. That said, many of us still deal with daily symptoms like nausea, pain, bloating, constipation and/or diarrhea, vomiting, fatigue, etc. Living with feeding tubes is only part of the treatment for many of us; they are life saving, but they aren’t the only treatment or the cure to those of us who have chronic conditions that cause us to need them.

8. You don’t experience hunger when you have feeding tubes.

Many people with feeding tubes still experience some degree of “hunger pains,” some have true hunger while others are experiencing spasms that mimic hunger, but it’s normal to feel hunger when you aren’t filling your stomach up with solid foods all day. There are so many conditions that can require use of a feeding tube, some of them have nothing to do with the function of the stomach (food allergies, swallowing conditions, FTT, eating disorders, etc.) so these patients are much more likely to feed into their stomachs (gtubes). They are also likely to experience hunger between feeds. Individuals with conditions like gastroparesis (stomach paralysis) and other digestive conditions may feed into their intestine, skipping the stomach completely. Some of these individuals experience hunger while others do not. Tube feeds do not always stop hunger and definitely don’t stop cravings. Some days it can be hard to avoid “real people” food.

 

Life with a feeding tube is not easy, but they are life saving and I wouldn’t be here without mine.  Feeding tubes are nothing to be ashamed of, if you have a tube, be proud. Advocate and spread awareness for yourself and for your fellow tubies.

I hope I covered all of the basics, but if you have anymore questions please don’t hesitate to ask! Feeding Tube Awareness Week is all about spreading awareness, sharing knowledge to help work towards more research and answers for the future, and supporting one another, tubie or not 🙂

 

Keep following the blog this week for more posts on Feeding Tube Awareness Week as well as a special video and information on how you can help the Newbie Tubies Project!