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/…

Must Haves for Tubies: A Guide to All of Your Tubie Essentials

Preparing for your first feeding tube? Or just adjusting to life with tubes? Here are some tips about some tubie essentials!

**always talk to your doctors when changing/adapting any parts of your treatment plan, my posts are strictly personal experience/personal research– I am not a medical expert, aside from my years of illness 😉

Gauze and/or Tubie pads—

Gauze and tubie pads serve the same purpose, they keep the tube site (aka the stoma) clean and dry, soaking up all excess drainage and keeping all outside gunk away! Some tubies have more drainage or granulation tissue while others hardly have any at all after the stoma heals from surgery; if you have a lot of it, continuously, gauze is often (not always) the best option. Tubie pads are much cuter and don’t require tape, making them easier on the skin. Some people use both, many people develop a preference as to which one they use, but either is a solid option for keeping your stoma clean and “happy.”

 

Great places for tubie pads (& great donors for newbie tubies!):

Homemade Tubie Happiness (on Facebook or Etsy)

Tubie Whoobies (Facebook)

Dorky Little Etsy Store (Etsy)

 

Syringes

 You’ll use syringes every day, you have to flush during and after feeds to keep your tube from clogging and many tubies take medications through the tubes, using syringes.

You can get various sizes and types of syringes, anything from a 1-3ml syringe (not used for tubes as much as for central lines), to 10ml, 30ml, and 60ml syringes. Luer lock syringes have smaller tips that can have needles screwed into them; they work best for flushing water/feeds through and the smaller ones can push clogs through. Slip tip/luer slip syringes have longer tips that are better for medications as they allow the dissolved meds pass through easier and leave less behind.

Your home health company should provide syringes, but if they don’t have the kind you like or don’t give you enough, you can buy mass quantities for cheap prices online.

 

Qtips, clean wash clothes, natural soaps

Keeping the tube(s) clean and dry is SO important. Change the gauze multiple times a day and pay attention to the stoma—clean gently with a warm, wet qtip when changing the dressing and wash with a cloth & natural soaps during your showers/baths/etc.

Don’t leave excess blood or drainage on the skin, it can cause irritations, itching, or pain. Some drainage and blood is normal, though. It’s no reason to panic.

 

Tapes/adhesives

 There are many types of tapes and adhesive bandages, as you go along you’ll figure out which best suits you! Your infusion/home health company should provide you with tape, but if they don’t or you don’t like what they give you, there is tape in any pharmacy or any store that has a health section.

Paper tape, transpore, or medipore tape are two of the easiest on the skin, but paper tape doesn’t last as long or stick as well and it is not water proof. It may take some trial and error, but you will figure out which works best, and if you use tubie pads you won’t need as much tape!

You should get tape from your home health/infusion company, but if not you can find it online or at the pharmacy.

 

Stoma creams/ointments—

Your tube site, aka your stoma, may cause you discomfort on and off even when it has healed. There are a lot of options for ways to try and minimize discomfort. You should ask your doctor before changing any part of your treatment plan, but these are some options to talk about…

Itching? Hydrocortisone cream, Benadryl cream

Pain? Lidocaine ointment

Skin irritation, granulation tissue, or bile burn? Try granulotion, calmoseptine, sudocrem, or any other barrier cream your doctor recommend

All of these items can be found on Amazon, at a pharmacy, or from your doctor…

 

Tubie belts, button covers, and tube clips

Along with tubie pads, you can get tubie belts and button or port covers that are especially helpful for children with feeding tube. Belts and covers help keep the tubes still and in place while being used or while not being used so that kids are less likely to mess with/pull on their tubes and cause harm to their tubes or themselves

The tubie clips help keep the extra tubing from dragging or getting caught on things when you are feeding on the go. These clips work well with backpacks and/or IV poles, whatever suits you. They’re cute and simple but can save you from yanking your tube out by accidentally stepping on it or getting it caught while moving around.

All of these items can be found on Etsy, a few of the best shops to find these?

Tubie clips: Crafting for a Cure Co. (They support Newbie tubies with their sales!)

Belts: Kangarootique (Etsy)

Heating pads

Heating pads help with pain, nausea, bloating, and so much more. You can get electric heating pads or microwavable ones. They come in all shapes, sizes, and patterns and you can get them anywhere– amazon, walmart, any pharmacy, or etsy.

One of my favorite Etsy shops and one of Newbie Tubies largest donors: Divine Comfort Rice Pks

Tubie Awareness Gear:

 Be loud & proud about being a tubie; there is no shame in having a feeding tube. There are so many cute shirts, bags, and accessories that help being a tubie be a little more glamorous. Don’t be afraid to let others know about your tube, awareness and confidence are important, and you never know who else may be out there with a tube hidden under their shirt, too?

A few places to find cute tubie apparel:

Tubie Love Gear: http://feedingtubeawareness.bigcartel.com/

Newbie Tubies: instagram @ newbietubies and/or positivelyrachel.com

 

Hopefully this information was helpful! For more, check out our tips list or visit my good friend, Carolanne’s blog, here for more information on tubie products!

Tips for Tubies: Tubie Love & Acceptance

I never could have imagined needing a feeding tube at 18 years old, and now, at 22 years old, I am still relying on my tube(s) — now I have two tubes and a central line. I’ve had tubes for so long and learned so much that now I’m able to teach others about them! My life took a huge change in direction when my health took a turn for the worst and had my tube placed; suddenly I was experiencing so many changes in my lifestyle and my body. I began to feel like I had zero control over my own body, and everything I had planned for my life, my future, began to slip away with every day, month, year, that my illnesses progressed. My feeding tubes took a little while to get used to, physically and mentally, because they cause bloating, they stick out through certain clothes, and they can leak and be kinda gross…but they also saved my life.

Learning to love your feeding tubes as well as yourself, both your body and your lifestyle, can be a challenge at first…I struggled for a long time to find confidence and acceptance of both my body and my tubes, I still struggle almost every day to pick out a shirt that doesn’t hug my tubes or my central line too tight or pants with a waistline that doesn’t hit my jtube… it’s not easy to feel confident when you feel like you’re the only one who looks like this, the only one with tubes, alone in the journey you’re facing.. my goal is to help others feel less alone.

Here are a few of my tips for adjusting to tube life and learning to accept the tubes as well as all of the way those tubes affect you, your body, and your lifestyle..

 

1. It can be hard adjusting to tube feeding and not feeling in control of your own body, but you should never feel ashamed of the tubes or the changes they can bring to your body. These tubes keep you alive every day. It may take time to come to accepting this addition to your body, and that’s absolutely okay, totally normal; but always remember that health comes first!

2. You get a feeding tube to restore your body and increase both strength and energy. Feeding tubes may be a bit of a pain, but they are meant to give you your life back, not take it away. Never give up on your dreams or your goals, although everyone’s healing times are different, and we all have different underlying causes/conditions, feeding tubes themselves don’t need to be looked at as a disability or a limitation; in fact, for many, they are the opposite.

3. Trying to eat while you’re a tubie is not anything to be ashamed of, and it does not invalidate your need for your tubes. Many people (with tubes) have a couple “safe foods” or still drink liquids, some can only suck on a piece of candy here or there, but either way, food or no food, you are still you, and only you know your body. If you can tolerate any oral intake and your doctor is okay with it, attempting to keep your system “awake” even with an occasional, tiny snack can be good and in no way invalidates your need for a tube.

4. Try to stay social! Being so sick and having a surgery like this often leaves one feeling exhausted, worn out both physically and mentally from the pain and inability to care for ones self; when getting out of bed is a painful challenge and showering takes more energy than was stored up for a whole week, it’s easy to get discouraged . Getting dressed and going out takes a ton of energy, but it is so good to get out, it’s too easy to become isolated! Friends will only take rejection so many times before they stop asking to hang out; even just suggesting a movie night or spa day at home is a great option to see friends, make plans, but not use as much energy. Your health comes first, but part of taking care of yourself means taking care of your mental/emotional health too, and having a healthy social life and support network is so important during times like these.

5. Feeling down in the dumps? During recovery and during challenging times throughout your journey it is so easy to slip into a “chronic illness mindset,”  which essentially means that to some degree, many have a time of feeling a loss and grievance over a “pre-illness” self, a self that can begin to disappear when illness takes over and we lose some of our abilities to function in the “normal” ways, or in the “normal,” functioning world.

If you sense yourself falling into one of these times, I highly suggest finding a way to remind yourself of your goals, your dreams, yourself. Try creating a vision board, definitely one of my favorite ways to remind myself of where I was before illness and where I want to go now, what I want to do in my future, and all of the things past, present, and future that give me hope and motivation. Just begin by thinking of all of your goals and dreams, even the totally unrealistic ones (being a mermaid, traveling the world in 30 days, learning to fly, etc.), and cut out pictures and words and quotes in bright, bold photos or lettering and then make a collage on cardboard or a tack board, heck put it on your wall if you want!  Hang it in a place where you spend the most time and allow it to encourage happy thoughts and positive thinking 🙂

I know people saying “mind over matter” and “just think positively, distract yourself” can be really frustrating or degrading, but positivity really is important if you want to make it through these transition periods and through your journey with chronic illnesses in general.

 

I plan to continue with more tips soon as well as some personal experiences with tubes, both good and bad 🙂 I am also going to be making a new vision board, and I will post a guide of how I did it when I can 🙂

Thanks for reading, don’t forget to check out the tubie items & artwork in the shop! Every purchase supports the Newbie Tubie Project, enabling us to send out another package & help another tubie adjust to life with tubes.

xoxo

 

 

** i am not a medical professional, just an experienced tubie sharing my experiences as well as those of other tubies who help me compile information to help inform others about what “tubie life” is like and how to make the best of it 🙂 Please consult your physicians before changing any medical treatments/procedures.

Good News– About time!

Well y’all, I have some great news. About time, right? Let me start by saying that I’m thrilled with this news. It’s incredibly exciting for me as well as for my family, but, I am writing this post and explaining this news to you because although it is wonderful news, and it is what I’ve been waiting for forever, it’s not going to be a walk in the park, piece of cake, cure all for me… it’s a complicated treatment that is not widely used for my condition but nonetheless, my best shot.

A couple of days ago I got the news that my IVIG has finally been approved, and not just for one dose, but for 13 rounds.  We’ve waited over a year and seen 3+ specialists in order to make this happen, it’s been a crazy battle to get to this point. On Monday 2/19 I will have my first round!

IVIG is IV immunoglobulin therapy. Essentially it is meant to reboot your immune system and help alleviate or reduce the symptoms of autoimmune or immune conditions. For me, the catch is that I do not have the typical conditions that IVIG is currently used to treat. There are many trials going on with how IVIG can help different conditions, gastroparesis included, but there’s no FDA approval for IVIG as treatment for it yet. That said, this is my only viable option left and because I do have an immunodeficiency, I was finally able to get it approved.

Throughout this process I’ve heard a lot of “slim possibility,” “doubtful,” “statistically…” “honestly…” “be prepared for disappointment…” and all of the other phrases doctors use to tell you they don’t think things will work…

BUT, we heard someone say, “it’s worth a shot,” and here we are today, after a long fight, ready to start a new trial.

IVIG is something my family and I decided was our best chance for change. Not all of my doctors agree, but when do they ever? It’s not a treatment widely used for gastroparesis or EDS/Dysautonomia, but because my immune system is involved, there’s a chance my GI system could respond in some way to it. My motility specialist is the one who suggested it as one of my last 3 options for treatment; today, this is the only one of those three options that I have left.

We don’t expect miracles. In fact, I try not to make expectations at all. I hope it works. It would be incredible. But if it doesn’t, I don’t want to be crushed. I’ve been warned by doctor after doctor that it is likely not going to help, so I’ve pretty much got that in my head, but I also have my own hope and positivity in there thinking maybe this is going to be it. I’m not a blind optimist, but I do have hope. It may be hard for some of you to understand that combination of emotions and feelings, but I’m glad it is, because it means you’ve never had to be this sick, and for that I am thankful.

I wrote this update because I know you all care, I know you all want and deserve an update, but I also needed to share with you how this process is going for me. It’s not going to be an easy treatment. It’s not a miracle drug. It’s not a guarantee of success or relief. It’s a treatment that is extremely hard on the body. It has major side effects. It’s a long shot. But it’s my only shot.

IVIG is what I’ve been fighting for and waiting for for a year. I’m so, so relieved that the fight for approval is over, but that doesn’t mean my battle is over, it’s onto the next step now. My family and I have worked so hard for this; hours of phone calls, emails, paper work, doctor visits, denials, tears…what a journey it has been, and now the journey continues. It will take at least 3-4 months to see any results even if this treatment does work. All great things take time.

What I need in this time is for my support team to just be here for me. I will update if there are any improvements or changes, I will update on how the treatment is going and if I am having any side effects or complications, and I will do my best to post regularly so you know whats happening in general. Try not to set expectations, have no disappointment, no pity or sadness if I see no results, no explanations of why it hasn’t worked or reassurances about when it will, just be here for me.

All I need is love. Support. Laughter. Company. Friendship. Exploration. Care. Distraction.

I’m sick and treatment is hard and unpleasant, but I have my ways of coping and I am still a person and sometimes I just need to be Rachel.

 

xoxo

My Story: Year 3 Tubie

**Happy Feeding Tube Awareness Week! This is the first new post, keep your eyes open this week for more posts including but not limited to : Tips for Tubies, a project update, New tubies: Products to start with and where to get them, more on my personal experiences, and a special video! It’s also a great week to buy a painting or send a donation to Newbie Tubie Care Packages, so click here if you’re interested in more information on that :)**

Next month, in March of 2k18, I will celebrate both my 22nd birthday and my 3 year tube-iversary. In March of 2015 I was in school at UVA where I celebrated my 19th birthday on March 8th and then was admitted to the hospital the next week with a blood infection from my central line, which was keeping me nourished and hydrated at the time. On March 24th I was again admitted to the hospital for surgery to place my first long term feeding tube, a GJ tube that went through my stomach and into my intestine where I get my feeds.

 

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Our first admission– Dec. 2013, I was 17 and a senior in high school
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My admission in Dec 2014– first year at UVA but about to get a picc line!

 

Although I’ve had gastroparesis since high school, I never could have imagined that my case would become so severe, leaving me with a feeding tube(s) that could be part of my life indefinitely, taking me out of school, and changing the way I was able to plan for the future. When I first got my tube, my doctors hoped it would only be for a few months or maybe a year if I was really struggling, but we had no idea that my “flare” was about to become my new normal. Instead of having a few months of worsened symptoms like I had in the past, I waited a year… and then another year… and now another year with no relief.

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March 2015; I did a trial feed with an NJ tube and then scheduled surgery!

 

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That’s my GJ tube in the fall of 2017, before surgery!

After I finished my first year of college my health was at an all time low and I wasn’t able to go back to school in the fall. My tubes did help my nutrition, but I never tolerated them well enough to get in as much feed as the doctors wanted me to, never enough to gain a lot of weight back. It’s been three years on medical leave now; my classmates, my friends, will graduate in the spring and I won’t have had another day to be there with them.

My parents and I worked so hard to find answers, anything that would bring even partial relief; our original goal was that I could go back to school, but after a year and a half of incredibly severe symptoms and the addition of 3-4 new diagnoses, our goals became things like, “getting Rachel out of the house more… helping get her able to volunteer or babysit sometimes,” and at my worst times, it’s just “getting Rachel more energy and less pain/nausea so she can get out of bed…” From the Fall of 2015 through Summer of 2016, I saw at least three different specialists who are top in the nation on my conditions. Sadly, there are only a few medications that are used for gastroparesis, most of them not even FDA approved, and they can have nasty side effects.

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4 hour cardiology/EDS appointments are always an adventure 🙂
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Family road trip to Cleveland! They try to make these trips somewhat enjoyable.

My last (and current) motility specialist is at the Cleveland Clinic and is considered to be one of the top specialists in the world on gastroparesis and dysmotility conditions. He did extensive testing to find a root cause of my GP and to try to find a treatment option, but what we found out is that my gastroparesis had gotten so bad that the numbers were matched with only one other girl’s testing as the second worst cases in CC records. I actually met the other girl online and have been able to talk to her and compare notes and, sadly, she’s still struggling in huge ways—she could use your thoughts/prayers.

Because my dysmotility (lack of motion, “motility”) has moved into my intestines and almost stopped my colon’s motion (colonic inertia), my options are very limited. I had one viable treatment option that we were told was a long shot at working, but it’s my best/only shot. We have been working for over a year now to get IVIG (IV immunoglobulin therapy) approved, it has been a long and tedious attempt that has involved 3 doctors and multiple infusion centers, lots of disappointment, and plenty of reality checks. There isn’t a great chance of it working, but it’s essentially my last major treatment option, so it’s what we have to keep fighting for.

Last year around this time, a few months before, I started having a lot of trouble with my GJ tube flipping up into my stomach leaving me unable to do feeds. Because it was happening 2/3 times a month, I was getting malnourished and dehydrated and had lost even more weight—my all time low. It was decided that I needed to have a jtube placed, one that goes straight into your intestine, not through the stomach first, but it took us awhile to make that happen.

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Tubie bear needs an update- surgery!
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Recovery is the hardest part….

 

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Double tubie at Christmas time

 

It took me almost another year to get that surgery done due to my malnutrition and some complications with doctors and finding a surgeon who would take on my case, but on October 18th I had surgery for my new feeding tubes. There were some complications during surgery as well as in the week post-op, and recovery was long and extremely painful. But, during that time I came up with my plan for my new project, Newbie Tubies, and now that has come to life and is such a wonderful part of my life.

I may not have ever been able to imagine my life turning out this way, but I have learned, been inspired, shared my knowledge, and seen things in a new perspective. I couldn’t do it without the support of my family, I’m so, so blessed to have parents who are willing to do anything needed to care for me and help me be comfortable.

 

Being a tubie is just a part of me now, and I’m more than happy to share all I can about that for Feeding Tube Awareness Week. <3

The Start of Newbie Tubies

During recovery from my second tube surgery just 3 months ago, which I admit was long and pretty brutal pain wise, I realized how lucky I am to have such an incredible family support team working around the clock to help make me as comfortable as possible. I know so many people, of all ages, are walking the same journey but don’t have the support system that I do, and because these conditions are so uncommon, most people have never heard of them or have no idea that anyone can require a feeding tube no matter how old they are or how healthy they have been.

 

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3/2015– In the hospital for a picc line infection and the decision was made to place a surgical feeding tube
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10/2017– first week of recovery from jtube surgery; the pain was unbearable, my sweet dog by my side 24/7 and constantly alerting me to pain and tanking blood pressures.

Sadly, most of us –myself included– just have to learn from experience, both our own and from online connections to people who are also experienced tubies or caretakers. I’ve had tubes for 3 years now, so I have a lot of first hand experience as well as what I’ve learned from my online community; so, if I can use my experiences and my knowledge to help bridge the gap and make the transition to tube life at all easier, I can’t imagine not doing it.

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2016– me on a “good” day; a summer day embracing my tube and my central line and not being afraid to let the world see those parts of my body that keep me alive
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3/2017- My post-surgical, bloated tummy with both a gtube and a jtube; sadly my tubes haven’t helped me gain weight, yet!

In December I began looking for small businesses, mostly on Etsy, that would donate tubie products and a few other care items to my cause and throughout the holidays I used my own funds to buy other products that were on sale, some items included were microwave heating pads, cute socks or fuzzy socks, soft throw blankets, journals and motivational books/journals, etc. I have a more detailed list I will share later on 🙂

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One of my first big donations–  heating pads from DivineComfortRicePks on Etsy; definitely recommend her products 🙂

In January I had enough to begin! I set up an online application and at this point (January 12) I’ve already had 10 applications! I’m so happy to have another way to share my knowledge, advocate, and most importantly, just to help others who are going through the same/similar things I have/am. It is amazing and inspiring and I couldn’t be more excited.

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My first package, it was smaller and more simple than what I send now, but it was for a beautiful friend who was anxious about surgery and it inspired me to continue with this project.

As excited as I am, I just can’t fund it all on my own. I use all of the profits from my paintings (whatever is left after canvas, paint, mediums, etc.) as my main fund, but that’s limited and depends on how much art I can sell. I do have a few other fundraising ideas, but I will also need to find more donors who are willing to help just because they feel that my cause is worth it.

 

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11/2017– My first public art sale/”show” at a local elementary fundraiser; I sell my paintings on my blog, on facebook, and just through friendly conversation/inquiry 🙂

Depending on the products I have on hand and the person (based on age and needs of the tubie), each package has a value of $25-$50, and that is without shipping. Shipping can cost a minimum of $14-$15 but can be as high as $30, again depending on weight and size of items and whether or not they will fit in flat rate boxes.

Right now, I’m still working with some donated items to create each package; right now, it is mostly tubie pads, some self care/pampering items, a handful of heating pads, blankets, and some extra little do-dads. But I’ve made a large dent in my supplies, so I am thinking a bit more about how to acquire some new donors and brainstorming some opportunities to find new products either by donation or for major discount!

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One of my favorite tubie pad shops, tubie whoobies, donated some incredible tubie pads for us.
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Some of my “do-dads” that just add a little fun, color, or comfort to a package for kids, young adults, or even kids/siblings of the tubie!

I love supporting small businesses and I include a card in every package with the information of each (business) donor so that my newbie tubies will be able to purchase more of any product they find helpful. I also post any business/shops that donate to my instagram, facebook, and blog, which ends up hitting over 3k people, many of whom are facing chronic illnesses and make great customers.

I know I have so many loyal followers who like to support all I do, and I don’t want anyone to feel any pressure to donate when it is not convenient for you; honestly, I’m sure I’ll be posting my amazon lists or shipping needs fairly regularly, so if now is not a good time, please do not feel a need to donate or purchase anything for me!

 

That said, here are a few ways you all can help right now:

  1. I accept re gifting!

**Did you receive some Christmas gifts that you know you aren’t going to use? Maybe too many of one item? I know many spoonies end up with lots of coloring books and fuzzy socks!

Or do you just have some extra stuff you aren’t sure what to do with? If it’s something someone could love, it’s package sized, and its in good shape, don’t throw it out!

Way too many adult or child coloring books? How about gel pens, markers, crayons, or any other drawing/writing instruments??

Small toys for children, stickers, etc? Common one, too many stuffed animals?

An extra planner? Fuzzy socks or small throws?

I guess you can say that I will be your “goodwill.” Let nothing go to waste or sit around unloved, instead, donate it to a good cause!**

See the lists below for more information about helpful products/items; I will take a lot of small items to save for someone who would love them!

 

  1. Purchasing a painting

**My art directly benefits my project! You can order my paintings on the blog or by contacting me directly through email or facebook.

Any profit – what I don’t use for paint/canvas/pouring mediums/etc.—goes straight into shipping and shopping for Newbie Tubies!

If you are local, we can meet in person to avoid shipping costs.

 

  1. Donations

The last option is just making a donation. If you want to make a monetary donation that would likely go towards sponsoring shipping for a box (or two!), you can do so through pay pal, send a check, or if you’re local we can work out a time to meet up for a cash donation if you prefer that.

I am also including my amazon wish list, “Newbie Tubies Wish List,” and my Etsy list, that have items, labeled/listed by priority (amazon), that I update based on what I could use at any given time.

If you are local and would like to donate but would rather pick up an item or two at the store when you go, I am including a list of other items as well. They can be dropped off at multiple locations, so please email me and we can make a plan (or if you work with my parents they will take the items as well). 🙂

If you are a small business, or know others with small businesses, and would like to directly donate products, you can contact me at positivelyrachel101@gmail.com about what product you have and how we can best go about shipping/picking it up!

Thank you so much for reading through all of that, if you made it! Below are each of the lists I have talked about; please, feel no pressure, it is just an option for those who have expressed an interest in helping out 🙂

Click each link below to go to said list:

Amazon list

Etsy list

A detailed list as well as my paypal account can be found in a separate post, here!

 

Thank you all so much!

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!