I grew up with two early childhood educators, so books have been a staple for me since day 1, and that is a true gift my parents gave me. Books help us learn about the world in a fun, visual, and age-appropriate /understandable way, teachings us the simplest of things like letters and animals to right and wrong, to all you can do when you grow up, and how to be the best YOU that YOU can be, whatever that means.
Books are part of what help us learn about new and different things we may come across, and it’s important to give children resources to help them be aware of all of life’s diversities and that being unique is never something to be ashamed of, so authors include all sorts of characters and situations in books that help prepare kids for life, even if the kids think it’s all just a story…. What about books for kids with illnesses? Children with wheel chairs, bald heads, or feeding tubes?
When I started Newbie Tubies I had a goal to help all of my “newbies” have all of the important information and to feel as supported as possible, and to learn love and acceptance for their new gadget and for themselves. Some people have a harder time than others with this, and that is completely fine, but sometimes you need to let those around you help you get to that point by letting them support you and accept you and your tube for you to see that your tube doesn’t change you, it just keeps you around…
Well, back to books, sometimes it can be hard for our littler tubies to adjust when they go to school and all of a sudden are thrown into a world where peers are eating lunch and bringing in cupcakes for birthdays and you’re no longer in the safety of your home, but both tubie and classmates start to see differences, even at a young, young age, and it’s time to bring in the books to help normalize tubes, to make all of the classmates learn through the avenue they know best – books.
For the same reasons, picture books about tubes can also be very beneficial for adult tubies who have young children or work with young children. Visual, audio, and hands on awareness and normalization is more than we can ask for, and starting young, starting by reading these books to the next generation is just awesome.
If you’re interested in sponsoring a book for our packages, we include one in each package we send to our little tubies and we appreciate every donation! I’m attaching the link as well as the list, so if you have a tubie of your own and want to buy a book, there are quite a few great options!
Our “Sponsor a Tubie Book” wish list on Amazon carries some FABULOUS tubie books for our young tubies! Click HERE to go straight to the list, the names of our most used books are listed below in case you shop elsewhere 🙂
“The Adventures of Team Super Tubie”
“Tubie Kids Like Me”
“When My Brother Got a G-Tube”
“My Belly has Two Buttons: A Tubie Story
“Emma’s Special Tummy”
My Tubey Series by Rhiannon Merritt-Rubadue (full series on amazon!)
“My Tubey Goes to School: A My Tubey Book”
“There’s More Than One Way to Eat: A my Tubey Book”
Every New Year I like to think, this is my year. I look back on the last year, or really just on my journey in general, and I think of course of my illnesses and my desire to find a cure or a treatment that would lead me to a more “normal” lifestyle, but year after year that doesn’t come. This year, I’m not relying on specialists with new perspectives or treatments that will be approved by insurance, I am instead looking at myself and my situation and thinking how can I work to maximize my experiences and the value of my time? I may never have my cure, and I may not get rid of my medical devices, but I can make the most of the life I have, and now that I’ve been through all the tests and all the procedures and I’ve seen the biggest and the best doctors out there, and here I am, how can I help myself?
I have just as many goals and dreams as I did when I was 16 and healthy, but now they mean even more to me. I want to get back to who I was, who I am, as much as I can. I don’t plan to achieve all of my goals this year, but I think setting myself up with healthy goals and positivity, a hope for a fulfilling life, could be the most effective “treatment” I can have.
I want to be more active, both in a sense of being able to spend more time outside of my home but also being stronger and feeling more fit and less frail. I want to make friends who are here for me regardless of my health and all that comes with that.
I want to fall in love, I want to feel like I am loved and adored no matter what my stomach looks like, no matter what I can or cannot do, no matter what date night looks like. I want to know there is a person out there who doesn’t need to see past all of my greatest insecurities, but is understanding of all I’m working through.
There are so many places I want to go and things I want to do, and I want to be able to do it without limitation, but if I have to work around things, I will. I can’t do a lot of the things on the top of my bucket list right now – swim with dolphins, scuba dive, snorkel in the tropics, etc. – but I can work up to it. If I’m facing a lifetime with health complications, I’ve got to start embracing that and working with it even more than I do now.
It’s not as if I can pick up and go today, I’ve got a few things to try to manage a bit better before I go too crazy, but it’s only January 7th so no one is too far into resolutions, right?
I have to learn to push myself in healthy ways but form a relationship with my body where I am able to feel more control while still continuing to listen to my body. I’m going to start with keeping up with the blog, revamping and working hard on Newbie Tubies, and trying to be more active.
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.
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.
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 🙂
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.
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.
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!
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:
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!
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.
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 email@example.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 🙂
It has been way too long since I’ve posted. I’ve been struggling with symptoms affecting both my mind and my body and I just haven’t had the brain power/energy to finish a post! My illness is a physical illness, but it stems from my brain and my autonomic nervous system so I have both neurological and physical symptoms, many of which are “invisible” to anyone who doesn’t know about them.
I’ve written before about how my Dysautonomia causes severe brain fog—this includes problems with word finding and sentence formation, short term memory loss, trouble focusing/short attention span, and a lot of day dreaming/zoning out. Right now my Dysautonomia is flaring because I had a virus and I’m not getting the full 2 liters of IV fluids I am supposed to get because of a back order that is in place due to the hurricanes that took out a major supplier in Puerto Rico.
Not only is this flare causing me to have extreme brain fog, but I’m having other symptoms as well such as falling asleep or losing consciousness while sitting or standing due to lack of blood flow to my brain. This is a common problem for those with NCS (one of the types of Dysautonomia that I have) but it is not only terribly annoying and embarrassing, it’s debilitating and limiting because I can’t drive or plan anything that involves standing or sitting for too long, and it’s hard to be around other people because I can fall asleep mid-sentence or even worse, in the middle of someone else’s sentence! Let’s just say I won’t be going on any first dates any time soon 😉
Because of my flare of Dysautonomia as well as an increase in severity of my migraines, I also struggle with overstimulation or hypersensitivity to sound, noise, touch, and smell. Overstimulation is something that a lot of people would think of in relation to autism or ADD in children, but it’s something I, as an adult, struggle with every day. Any loud or repetitive noises or bright, colorful, or flashing lights can send me into a terrible episode of overstimulation that leaves me in full body pain and spasms as well as with a migraine that doesn’t respond to medication. Some days my skin hurts to the touch like there’s a bruise spread across my whole body. Before my diagnosis my family thought I was just crazy and picky about noises, but now we know my brain really just can’t handle a lot of these noises, lights, etc.
Winter is always a challenge for me because I deal with intense pain flare ups due to the cold, lots of migraines, and my GI system always gets even worse than normal once I hit November/December, this year just seems to be throwing a few curve balls at me with the neurological symptoms being so significant on top of the normal flares.
Luckily I’ve learned how to adapt and work around most of these symptoms so I’ve still enjoyed getting ready for Christmas and our Christmas day was lovely and (relatively) peaceful. It’s so nice having my family home for an extended break—having company and my care team here makes things both easier and much more fun J
I hope to start being able to use my brain a little more so I can update on some more things and also share more about my Newbie Tubies Project and how I’m hoping to get that going by the New Year!
Yesterday I got a new diagnosis. But in all honesty, a new diagnosis doesn’t phase me much anymore. When I was 16 I got my first diagnosis, Postural Orthostatic Tachycardia Syndrome (POTS), but I had no idea that 5 years later I would have more diagnoses than I can count on both hands.
In 2016 I was diagnosed with Ehlers Danlos Syndrome, a genetic condition that affects connective tissue and collagen in your body. For me, this diagnosis explained a lot. I had already been diagnosed with Dysautnomia/POTS/NCS as well as Gastroparesis and generalized dysmotility in my colon and intestines. I had been struggling with unexplained chronic joint and nerve pain and I finally had an answer; although EDS wasn’t an easy answer and it meant I will likely never be completely free of illness, I finally had answers.
You probably won’t understand this unless you’re chronically ill, but after receiving that diagnosis, the ones that followed haven’t been surprising to hear or hard to accept. EDS has a lot of co-morbid conditions, and as mine has progressed and as I’ve seen more specialists, I’ve collected a nice array of conditions. Because I know my illness and understand what it can cause, I’m prepared for all of the co-morbid conditions it can bring on.
It’s never good news when I get another diagnosis, but I like to think that a diagnosis simply means we are moving forward towards treatments and answers, it doesn’t actually change anything symptom wise. I’m the same as I was before the diagnosis, I just have more answers and another syndrome/condition on my records. Usually a diagnosis actually brings me more relief because doctors actually start treating a conditions once it has a label and is no longer just unexplained symptoms.
I don’t mean to minimize the severity or seriousness of chronic illness; every illness I have I take very seriously and we treat each to the best of our ability. But after being sick for so, so long and being diagnosed with so many things, there is a desensitization to the process. Maybe it’s a protective mechanism, a coping mechanism, or maybe it’s just because it becomes your life, but just because I’m progressively ill doesn’t mean I have to let each diagnosis set me back.
Have you ever had to make a decision between what may be smart or practical vs. what would make you happy or what would be fun? People often make these choices in small ways every day when it comes to choices about what’s for dinner, whether to study or go out with friends, what to wear, etc. One of the biggest lessons I have learned in my journey with chronic illnesses is that life is short and sometimes it’s worth a little bit of impracticality if you’re just in need of some fun.
I spend a lot of time taking care of myself and majority of the time my health comes first. I have a lot of doctors appointments and I spend anywhere from 16-20 hours a day hooked up to my IV pole on various tubes for infusions and feeds. I take countless daily and as needed medications and require a great deal of rest due to chronic fatigue and pain. That said, after a rough recent admission—which you can read about in a recent article here—my parents and I decided that I am in need of some fun.
I have some fabulous friends who live with similar health conditions that I do, but most of them live hours, states, and even countries away! Taylor is one of my best friends and she lives in Texas; she has two or three of the same conditions I have and has a feeding tube! Taylor came to visit me and our other friend, Macy, last summer and we had an amazing time! We have had two other trips planned but both fell through due to our health at the time.
Well, even though my health is not currently considered “good” or even stable, I’m going to go visit Taylor! I will fly to see her and spend a week with her in Texas! Considering most days I hardly leave my house right now, this is a huge undertaking for me, but it will be so good for my spirit. And although we are both in our early/mid twenties, Taylor and I are both quite sick and have similar restrictions so we will be good company for one another 🙂
I am so excited for this trip. I do have some anxiety about flying and traveling by myself and I know that I will need a long time to recover when I get home, but it is totally worth it. Although I can’t escape my body and my illnesses, I can take a small break from all of the stress that comes along with appointments, phone calls, insurance, etc. (or at least I can try!).
This trip does not mean I’m feeling better or I’m recovering, it just means I’m doing something that is fun and something that will make me happy. I’m taking time to be young and savor this part of my life as much as I can. We don’t have time to waste, so even if all Taylor and I do is watch movies and talk and nap, it is so worth it. Even if it takes me two months of sleeping when I get home, it is so worth it.
Don’t forget to choose the option that will make you happy sometimes, even if it may not be practical.
As my 21st birthday approaches (less than 2 weeks away!), I have been reflecting a lot on all that has changed this year and how crazy my journey with chronic illnesses has been. My life is so different from what I used to imagine it would be at this “milestone.” I never could have predicted the many things that have shaped me into who I am today, but I’ve made it another year and that’s something.
When I was younger, I always imagined my 21st birthday would be celebrated with food, friends, family, and of course, my first legal drink. I figured at this point in life I would be in college studying and living like a college student. I got one year in at UVA before taking medical leave; I am still working on getting back two years later. A part of me still feels like I am a first year at UVA, yet I see all of my friends getting ready to finish their third year! I can’t believe it.
This year, my illnesses have progressed to the point where I’m not able to intake almost anything orally, I have trouble even tolerating my tube feeds, and most days I spend much of my time in bed. My migraines make me extremely sensitive to sound and light so I get over stimulated very easily. I am 100% dependent on my feeding tube and my port for nutrition and hydration and I am on around the clock medications to try to control nausea and pain. My symptoms and lack of energy make it hard to plan ahead and make it so that I’m most comfortable just being at home.
My 21st birthday won’t be celebrated with food or alcohol. I likely won’t see friends or have any sort of “party.” My mother does like to try to be sneaky, so if you hear of any secret plans, feel free to inform me. I’m not a huge fan of surprises 😉 My birthdays now are usually a quiet affair celebrated with just my family. I don’t tell you this to complain, this is just how it is; for me, simple and peaceful is usually just right. Since I can’t eat and my energy levels are extremely low, I don’t require much. Chronic illnesses steal a lot from you, but they don’t have to prohibit you from having fun or enjoying special events.
Although my 21st birthday is not what I would have imagined it to be, and my life has taken some unexpected turns, I feel blessed just to be here and to have an incredible family here to help make the day as happy and celebratory as possible. My illnesses have taught me to be so appreciative and thankful for all of the small things in every day, and I know my birthday will be wonderful, even without cake or alcohol 😉
This week is Feeding Tube Awareness Week. As part of that, I decided to write a blog post about my journey as a “tubie.”
I got my first feeding tube in March of 2015. I had been battling with gastroparesis for just over a year at that point and was in my first year of college at UVA. Although typically you try a feeding tube before you resort to TPN (total parenteral nutrition—IV nutrition), I had already been on TPN for three months before this. Because I was hospitalized in December right around final exams and was supposed to return to school away from home, my doctors had placed a picc line in December in hopes that it would be short term and it would allow me to remain at school. However, when that line got infected in March and TPN was not working well, we decided to go ahead with a feeding tube.
My hospital does a short-term trial run with an NJ (nasojejunal) tube before placing a long term GJ (gastrojejunostomy) tube surgically. For me this meant a two hospital stays, one for the trial run during which I had my NJ tube, a tube placed through my nose and down past my stomach into my intestine where we hoped I could tolerate feeds. Having this tube placed was one of the most uncomfortable procedures I had experienced up to that point. I was not sedated or medicated at all aside from some lidocaine ointment and they stuck the tube down my nose, past my throat and into my esophagus while I was choking and gagging, my nose bleeding, tears streaming down my face, and they kept telling me to sip on water and swallow and just hold on it’ll be over soon. Some people tolerate it fine, especially people without gag refluxes, but for me it was miserable. I could hardly talk or swallow for the two days they made me keep it in. So shout out to my many friends who have multiple, long-term NJ tubes, I don’t know how you do it.
The second hospital stay was for my surgery. They decided to place a low profile, mickey GJ button tube. I was lucky that I still saw my pediatric doctors, because they use these tubes on children and I am small enough to fit into them. Often, adults get long, dangling tubes called PEGJ tubes. My surgery was able to be done laparoscopically, but they placed the wrong size tube so the pain was much more than anticipated and we stayed in the hospital for a five days to try to manage that. I had to keep that tube in for 6 weeks for the tract to heal before switching it out for the right size and finally getting some relief.
I stayed in school for that semester anticipating that my feeding tube would improve my quality of life; in many ways, it did. However, my gastroparesis continued to progress and I had to make the decision to take time off from UVA and stay home the next fall. Although my feeds did help me gain some of my strength back, I didn’t end up tolerating them as well as we had hoped. It’s been quite a journey.
For a while I was able to get in almost 1,200 calories by tube every night. Because of my chronic fatigue and the amount of time I spend in bed, that was almost enough to get me by and I was still able to take in a few hundred calories by mouth. Over the first year or so, my tube feeding rate slowed down by about 40% and it took me much longer to get in what I needed and I often wasn’t able to finish feeds over night. But still, I was able to supplement some of what I needed by eating a few of my “safe” foods—potatoes, squash, simple carbs.
Other parts of tube life include daily maintenance like keeping drainage clean, flushing the tube every couple of hours so it doesn’t clog, and changing tubie pads or gauze. I deal with bloating, pain, and changes in how my tube has affected my self confidence and body image as well as adapting to how little control I have over what goes into my body.
I also have to get my tube changed out every 3-6 months or every time it flips into my stomach or clogs. I can tell my tube has flipped into my stomach when my medications and feeds make me sick. When this happens, I have to schedule a time to get my tube fixed. When it is clogged, I have to call UVA and ask them to order a new tube. Sometimes it takes up to a week for them to get a new one and I go that long without receiving my feeds. (That happens to be the case this week!) I don’t get sedated for these tube swaps– some doctors use sedation, others don’t, mine just happens to be one who doesn’t. I get them done in radiology under imaging. They know me pretty well down there. It is an uncomfortable procedure but usually only takes between 30-60 minutes.
I’m about to hit my two year mark with my feeding tube and I now only tolerate a rate of 50ml an hour. That is almost half of what my goal rate was when I got my tube. My original diagnosis was gastroparesis, or paralysis of the stomach, but now my diagnosis has changed to Digestive Tract Paralysis (DTP) which means my dysmotility has moved into my lower GI system which makes tube feeding much more difficult. My colon is now greatly affected and my intestines are also delayed.
I recently switched formulas to a blended food formula in hopes that I will tolerate it better and it will make my body feel more human-like than my old formula that was full of preservatives and sugar. Sadly, I am not able to get in enough formula to gain weight. At this time, I also do not have any “safe foods” that I can intake orally to use to supplement my tube feeding. Because of this, my doctors talk about alternative options that could be in my future.
My tube saves my life every day. I rely on my tube and my port for 100% of my nutrition and hydration now. I can’t say I’m always thrilled about tube life, but I wouldn’t be here without it and I am so thankful for it. If you have any questions please don’t hesitate to ask!
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:
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.
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.
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.
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.
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.
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!
So I haven’t posted a blog in a couple of weeks and although I’m sure in this busy season of life most of you haven’t even noticed, I decided to give you an idea as to why it is that I haven’t been posting.
The last few weeks – or really the last couple of months—have been really challenging for me health wise. Winter has always been my worst season, especially for my gastroparesis. I’ve been spending anywhere from 16-22 hours in bed every day, my pain and nausea levels have been through the roof, and I’ve been having migraines literally every day.
Aside from being in a major flare up of all of my physical symptoms, I’ve been struggling big time with my brain fog; that’s what I want to talk about today. When I tell people I have this elusive symptom called “brain fog,” they often just blow it off and think I simply mean I’m tired, lazy, or forgetful. But brain fog is a real symptom of my condition(s) and it has seriously affected my life since getting sick.
The medical term for brain fog is cognitive impairment. The most common symptom, and the one I struggle with the most, is difficulty with word finding. Essentially, I know exactly what I want to say but I have no idea what words to use to say it. I forget simple words used to form sentences, names of objects, places, and even names of people. I often have trouble forming sentences and finishing thoughts. This makes holding a conversation — or writing a blog! — very difficult at times.
Other symptoms of brain fog include short-term memory loss, decreased concentration, and fatigue especially after mental exertion. For example, when I am reading a book I often find that I have no idea what the page I just read said. Although I’m sure that many people find they have this problem, its not because I was day dreaming or because I don’t like my book, its just because my fatigue and my fuzzy brain can’t keep up. I also couldn’t tell you the name of the book I’m reading right now if my life depended on it nor could I tell you the names of my favorite movies, books, or often even my favorite actors or authors.
These symptoms make school extremely difficult for me and for many other patients who live with POTS and other conditions that cause brain fog. Imagine trying to write an essay (hopefully you can find words in your fuzzy head) on a book you can hardly even remember reading. It again also makes conversations hard because when people ask me simple questions like, “Who’s your favorite actor?” or “What movies have you watched recently?” I often have no good answer for them when I’m put on the spot.
A few of the other symptoms of brain fog include difficulty multitasking, blurred vision, headaches, and difficulty working with numbers. Not everyone has all of the symptoms and there are others I didn’t mention, but now you have a general idea! Research states that up to 96% of patients with my form of Dysautonomia have brain fog.
My brain fog gets worse on days when I’m more fatigued or have over exerted myself (which doesn’t take much!). It is also made worse by certain medications that have side effects like drowsiness or lightheadedness. When I’m tired and having a conversation with someone who doesn’t know about my condition and how it affects my ability to find words, I can get extremely flustered and overwhelmed.
I used to be extremely articulate and I had a great vocabulary so it can be weird for me to talk to someone who knew me before I got sick because they often aren’t aware of how my condition affects that part of my brain. Brain fog is an extremely frustrating symptom of Dysautonomia and it is so much more debilitating than one might think. I know my brain function is in there somewhere, but it often hides and doesn’t work as well as I’d like it to.
I’ve learned to cope with brain fog, but it has taught me that you can be robbed of any part of yourself at any point in life, whether it be your vocabulary, your ability to form sentences, your memory, your ability to consume food, your ability to walk, your ability to see, etc. There are a million things we take for granted each day, and the only time you will truly start to look back on it is when you lose one of these things.
I know I say it all the time, but I continue to encourage you to take nothing for granted and love others unconditionally. Don’t judge someone before you know their story. Brain fog is a real symptom and it affects me every day. Many people don’t believe that, but that’s just because they’ve never walked a day in the life of someone living with it.