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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!

Why I Sometimes Choose not to Listen to my Body

When you’re sick for a long period of time, you become very in tune with your body. I’ve learned how to listen to its cues and I can often tell what kind of day I’m going to have or when certain symptoms are escalating and I can then plan my day accordingly. However, I’ve also learned that sometimes it’s okay to hear my body out and then choose not to listen to it.

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A recent outing to visit a friend who has alpacas! One of my favorite animals 🙂

Right now I’m at a point in my illness where I don’t get many great days. I have days that are less symptomatic, sure. But every day I’m experiencing pain, severe nausea, migraines, and fatigue. I spend most of my time in bed, sleeping all night and much of the day. I am often pretty uncomfortable when I am up and moving around.

That said, when I get the opportunity to do something fun, sometimes I have to tell my body that I don’t care what it thinks, I’m just going to do it. For instance, my dad got 2 free tickets to the UVA basketball game this weekend and my little sister, who is a huge fan, couldn’t go. Obviously, I love UVA basketball, but events like that aren’t easy for me to attend. This is something that my dad and I used to love to do together and I haven’t been to a game since I was in school there two years ago, so I decided to fight my body and take advantage of the opportunity.

I’ve been in a flare up all week because it was an antibiotic treatment week and those always take a lot out of me. Because I’m low energy and high needs, preparation for me to go on an outing like this takes a lot more time and planning than it does for most people. I showered the night before because I always have to nap after showers—they exhaust me and always leave me with a migraine. When I woke up on Saturday morning (for the first time) I did a bag of IV fluids and did my morning meds a few hours earlier than normal because they make me sick to my stomach. I took three different nausea meds by 8:00am and made the final decision that I was going to go with Dad to the game. I stayed in bed finishing my tube feeds and trying to rest and control my pain/nausea until about 11am—the game was at 2pm.

As I said, for me, this game is a huge outing. So, I had to take enough nausea medication to last me at least 6 hours, pain medication, migraine meds, and all of the other supplies that go along with my tube and port. I also take sunglasses and a mask for the car because of my light sensitivity, a heating pad, lidocaine patches on my back and my stomach, and lots of germ-x! I’m nearly 21 years old, but packing me up for a day trip is comparable to packing up a baby’s diaper bag, just swap diapers and toys for medical paraphernalia.

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Yay! We made it!

I love getting out and doing things that I loved doing before I got sick, but as you can see, it is quite a process now. Going to this game will likely land me in bed for days recovering from using so much energy and being so over stimulated, but being there reminded me how much love I have for UVA and getting out and having quality time with my dad that wasn’t a road trip to a doctors appointment was such a gift. I’m blessed to have a family that works hard to help me be able to have fun outings like this every now and then.

Some days, chronic illnesses just don’t get to win.

Brain Fog

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.

 

 

 

Chronic Migraines; More than Just a Headache

When I think of my migraines I picture the New Years Eve ball drop and the huge build up to the 60 second count down to when the ball drops and everyone cheers, people kiss, and confetti flies. Well picture that except every day with chronic migraines you live with that 12,000 pound ball in the back of your head just counting down until the next wave of pain comes.

But the build up to this moment isn’t Ryan Seacrest and champagne and glittery 2k17 glasses, it’s ringing ears and spotty vision, neck pain, nausea, and all sorts of other symptoms that come along with migraine auras. And then the ball drops and the pain hits full force and you can’t look at any lights or be around any noises, you just lay in a dark room for hours on end taking emergency migraine meds and pain medications (that may or may not help) and waiting out the pain. There’s no cheering or kissing and no confetti, just more nausea, light sensitivity, pain, weakness and fatigue.

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A pretty typical look for me; ice or heat on my head, a mask on my eyes, and my dog cuddled up right by me. (attractive, right?) I actually brightened this photo so it was more clear, but I stay in a dark room almost all day to prevent migraines.

The problem with these migraines is that they can last for days and sometimes the pain comes and goes so you never know when it’s safe to leave the comfort of your safe space. Will sunglasses be enough to save you from the light? Will the meds last long enough for your outing? How many hours (or minutes) do you have before the pain hits again?

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I never leave the house without my sunglasses!

What people don’t understand about migraines is that they aren’t just a headache. They’re a full body experience. They affect your head, your eyes, your neck and back, your stomach, your muscles, and your overall well-being. The symptoms for one person’s migraine may be different than the next, and your migraine today may be different than that of tomorrow.

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Migraines aren’t pretty; they leave me in bed for extended periods of time and often asleep more than I’m awake.

Migraines can be completely debilitating for many people, both young and old. They can lead you to be bedridden for days at a time and cause you to miss extended periods of school or work. You often can’t look at a phone or computer screen, read books, or do much of anything during the worst parts of a migraine, so they are extremely limiting. There are many treatments for migraines, but they don’t work for every body and it takes time to find the right treatment for you.

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Botox, anyone? Yes, botox can be used to treat migraines! It can also be used for gastroparesis!

When someone says they have a migraine, don’t brush it off like it’s just a headache. Migraines are a serious condition that affects a large portion of the population. Chronic daily migraines are less common but even harder to manage. It’s important for someone living with these conditions to do what they need to in order to take care of themselves.

Migraines are more than just a headache. Be aware and be compassionate; though the pain may be invisible, the suffering is tremendous. Small acts of kindness and care to those who are suffering are such a gift.

Here’s to the only ball drop of 2k17 being that in NYC.

A “Non-Hallmark” Christmas

Let me start by saying that I love Christmas. I’m one of those people who is ready to start baking Christmas cookies and watching Christmas movies right after Thanksgiving (much to the dismay of my sisters 😉 ). The whole season just seems so… jolly! I love seeing people light up with holiday spirit; it just seems to bring out the best in people.

This holiday season I feel incredibly blessed in so many ways. We recently moved into a beautiful new home on an amazing piece of property. Although I sometimes miss our old house, I love living in the woods and our new home is so accommodating to my needs with my illnesses as well as the needs of my family.

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The new house!

I’m also so thankful for my family who continues to be by my side through my toughest times. I could (and probably will) write a whole blog post about how amazing my family is, but for now I’ll just say that I literally wouldn’t be here today without them.

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My family (minus one!) in NYC last Christmas! That trip just about did me in, but it was so fun!

I’m thankful for all sources of warmth—my home, my bed, my heating pads, my hats and coats, and all my fuzzy blankets. Of course I’m thankful for my dog, Baxter who keeps me company every day and brings so much joy to my life! And I am thankful to have good health insurance and a great set of doctors working with me to find a good treatment plan as my health continues to be a challenge. The list goes on, but the general idea is that I’m overwhelmed with gratitude during this holiday season.

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Little man in his Christmas sweater 🙂

That said, even though I love Christmas and I feel blessed to have so much to be thankful for this holiday season, over the years I have also come to understand that not everyone has a perfect “Hallmark Christmas.” Many of us are plagued by illness, loss of a loved one, poverty, family discord, and other things that may affect our holidays.

This will be my 4th Christmas living with severe chronic illnesses. My illnesses never keep me from having a joyful Christmas, but they do affect how I get to celebrate. My day won’t consist of eating Christmas brunch or Christmas dinner with my family, there won’t be any sweet treats in my stocking, and I won’t be running around outside or wrestling with my cousins like I used to do or sitting and sipping wine with my aunts and grandma.

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My delicious (not) Christmas dinner! At least my pole is festive 🙂

This time of year is actually when my illnesses tend to be at their worst. My pain levels are high, my nausea is relentless and completely overtakes me at times, I have daily migraines, and many days I’m asleep more than I’m awake. I’m incredibly thankful that this year I have the means to stay at home and out of the hospital for the holidays by relying on my feeding tube and my port (a central line in my chest that acts as a long term IV) to stay hydrated and get in enough nutrients to ride this flare through.

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Pretty much me right now.

My Christmas Day will include IV saline, tube feeds, nausea and pain medication, and napping in place of breakfast casseroles, eggnog, cookies, and snowball fights, but that doesn’t mean I won’t love it. My family helps make Christmas special for me every year; it may not be ideal, and it may not include any Christmas miracles, but I have so much I am thankful for and I will have so much to enjoy on Christmas day.

 

Not everyone has a perfect “Hallmark Christmas,” but that’s okay. Celebrate as much or as little as you are able. Celebrate in what ways make you happy. Take care of yourself this holiday season and help others do the same.

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Having these illnesses has really widened my perspective. It is important to keep in mind that not everyone has a perfect holiday as we go about celebrating this season. The holidays are a time of joy, love, generosity, and gratitude and it is so important that we keep that in mind as we share this time with our loved ones as well as with those we may not know as well. Not everyone is full of holiday cheer, and that isn’t a crime. I encourage you to always give people the benefit of the doubt and simply spread love this holiday season.

 

 

 

A Balance of Hope

Did you ever write a letter to Santa asking for a puppy or maybe for the new xbox360? And maybe Santa brought you a stuffed animal puppy or FurReal friend instead? Not what we meant, Santa. And maybe instead of the new Xbox he brought a new game for the totally lame game cube you’ve had for years? Or maybe something completely random like ANOTHER box of Legos? I mean, come on Santa, that is so elementary school.

Well, we’ve all gotten our hopes up for things that haven’t happened before. We recover eventually, but it can be pretty disappointing! I’ve learned that with my chronic illnesses, I can’t get my hopes up every time I go see a new doctor or try a new medication. Some people have trouble understanding this, but for me, there’s a big difference between having hope and getting my hopes up. The latter of the two is the one that is much more dangerous for me.

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Passing time in the doctor’s office by snapchatting! Smile and designer bags under my eyes 🙂

 

There are a couple of reasons for this, the first being that I simply see too many new doctors, each of whom comes with their own plan for therapies/treatments/medications, and they don’t all work. The truth is, most of them don’t work! Chronic illnesses are very complex, and there aren’t very many approved treatments for them, so we (the doctors and patients) end up putting together treatments of our own and it is a lot of trial and error. Our doctors work really hard for us, and I am so grateful for that! Sadly, a lot of these meds just aren’t made specifically for our conditions and so they often don’t work out. Sometimes the side effects are too much, insurance doesn’t always approve treatments, and other times the medication just doesn’t help. Either way, if I thought each medication were going to be the fix-all, I would be incredibly disappointed much too often.

The second reason I try not to get my hopes up is that my illnesses are chronic. This means they likely won’t completely go away. I hope every day that we find a treatment plan that lets me live a much more comfortable and high functioning lifestyle, but I also know (at this point) there is no cure for my illnesses, so I’m always at risk for my symptoms coming back. This can be a daunting thought, but I work with some great doctors and have a lot of hope that eventually we will figure out a way to help me get back on my feet (literally and figuratively some days!J) and having more good days than bad.

I guess you could say that not getting my hopes up is a sort of safety net. In order to live my life with a positive attitude and to hold onto hope for a more “normal” life, I can’t get my hopes up about each of the individual treatments my doctors give me. However, as one doctor liked to remind me, attitude does make a difference, so it’s important to have hope. This is why I make a point to stay positive and have hope that we will find the right treatment eventually! One of these days a doctor is going to choose the right treatment, and when he does, I am going to be like a kid on Christmas morning that finally did get a puppy!

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Here’s a puppy visual for you 🙂 He is a great therapy and gives me hope!

Because I don’t get my hopes up every time and therefore don’t get let down as easily, I am able to keep hoping every day for a better tomorrow. I hope for days with less pain. I hope for days with move activity and less napping. (Yes, I want to spend less time in bed!) I hope for times where I can eat more and expand my “safe foods.” I am hopeful that I will go back to school and get my degree(s). I am hopeful for a future that holds a more “normal” lifestyle and one that that will include fewer doctors’ appointments and more time with friends, a job that I love, and health for my family and for myself. And I hope that one day there is a cure for gastroparesis, dysautonomia, EDS, and all of the other chronic illnesses that affect me and so many other people everyday.

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Laughter, loved ones, and pretty dresses

There’s a difference between getting my hopes up and being hopeful, and I have found the balance that works for me. Albert Einstein once said, “Learn from yesterday, live for today, hope for tomorrow.” I’ve learned that living one day at a time is the way to go, but hoping for a better tomorrow never hurts.

Chronically Thankful

Happy Thanksgiving!

For me, Thanksgiving is a little different since it obviously won’t revolve around food. I rely on my tube feeds and IV fluids for nutrition and hydration, and food isn’t a big priority for me. Because of this, I get to focus more on the real meaning of Thanksgiving: it is a celebratory day at the end of harvest where we express gratitude for all that we have.

I may not have had a harvest, but I have so much to be thankful for. Some people are surprised at how often I post about my gratitude and positivity towards life, but my illnesses have only made me more thankful for all that I have. So, while I won’t be saying thanks for a good meal or a nice glass of wine this Thanksgiving, here are a few things I am thankful for…

  1. My family

Okay, the first one is a little cliché, but for me, my family is more than just a family. At 20 years old I still live at home full-time with my parents and younger sister. My parents are my caregivers; they take me to appointments, make my tube feeds, pick up medications, and on my worst days help me in and out of bed, mom washes/brushes my hair, and they do anything else I may need. My parents and sister are also my best friends. I spend almost every day at home and they are pretty much the only people I see (and Sam– Laura’s boyfriend 🙂 ); they work hard to find things to do to try to entertain me and keep me occupied. Without my family, I wouldn’t be here today.

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  1. My dogs

My rescue pup, Baxter, is my #1 form of therapy. He is better than any medication I’ve tried. Being home alone a lot is made so much easier by having dogs. Baxter is always by my side and knows when I’m having a bad day. He loves to cuddle up with me (and my heating pad) when I need a nap, sit in the sun, take a walk, or just lay in bed and watch some Netflix. He is a fabulous buddy to have around 🙂

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  1. Tyler

Almost five years ago I was blessed enough to be assigned Tyler as my challenger baseball buddy. Every day I am thankful that he came into my life and that he continues to make it brighter every time I see him! It has been such a gift to see him grow and to have him by my side to shed some light on things throughout this journey!

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  1. Insurance

I’m thankful for my health insurance. Even though it can be a pain in my butt when it doesn’t cover something or fights me on a medication/treatment, I will always be thankful that I have it. Some people are not so lucky.

  1. Living in a beautiful place

We recently moved into the woods in Union Springs. We are surrounded by trees and live a short drive/walk from a reservoir and several ponds and creeks. It is so peaceful and beautiful up here and we live in an area with such gorgeous mountains, farms, and parks. I love having such beautiful sites, it is such a gift to be able to go for a drive and see such incredible views so close to home.

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  1. Doctors and Nurses

I can’t forget all of my great doctors, nurses, and pharmacists. They work so hard for me and for all of their other patients. I have amazing nurses who work around the clock helping me communicate with the doctors, schedule appointments, and think through symptoms and minor medical dilemmas. My doctors work so hard with patients whose cases are so complex. And my pharmacists help keep track of my meds, interactions, and refills. I literally wouldn’t be here today if it weren’t for them.

  1. Warmth

I’m always cold. September-April you can count on me being bundled up and under a heating pad. I am thankful for my sweaters, hats, heating pads, heated blankets, fuzzy socks, and mostly for my comfy bed! Also, of course, for my home and heat; not everyone is so lucky, so take time to be thankful for warmth this year!

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  1. Community

I’m also very thankful to have a supportive and loving community. My community here at home has shown my family and me so much support throughout my journey with chronic illnesses and it has made such a difference for us. Knowing you have such a big support team is such a gift, and not everyone has that.

I’ve also found a community of people living with illnesses just like mine through online support networks. These sites have let me connect with people from all over the world who are going through the same thing that I am. I’ve made great friends who really understand what I am facing and I’m even lucky enough to hang out with some of them in person!

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My list could go on, but there’s a taste of what I’m thankful for! I also think this year it is important to remember that many of our Native Americans are facing brutal conditions in North Dakota while they fight for their right for clean water and for their sacred lands at Standing Rock. Thanksgiving is a day that celebrates a peaceful meal between the settlers and the Native Americans, yet this year there is no peace at Standing Rock.

There are many things we often take for granted, and today is a day to be reminded of how much gratitude we should have for all of these things. I hope everyone has a great Thanksgiving and can find lots to be thankful for!

Cleveland Update!

Here’s what happened in Cleveland!

On Tuesday the 15th we were in Cleveland to see Dr. Cline at Cleveland Clinic and follow up on my smart pill test. For those who don’t know, the smart pill is literally a pill that you swallow and it records pH, temperature, and pressure throughout the GI tract as you move it through over the course of 5 days. This is a motility test (movement test) looking to see how well your GI system is functioning.

Well, Dr. Cline explained to us pretty much what we already expected to hear: my whole GI tract is now being affected by dysmotility. This means none of it is moving like it should.

Specifically, my stomach took 27 hours to empty (it should be less than 4) and my colon did not empty in the time that the pill was active (120 hours—it should empty in less than 48 for someone my age or 59 for the test’s basic criteria). We are not sure when exactly the pill moved out fully (hopefully it did!).

The doctor said that this explains why I don’t tolerate my tube feedings well and why I am unable to gain weight at this point. However, due to some elevated liver function tests, I’m unable to start IV nutrition (TPN) right now, but honestly that’s okay with me. I’ve been on TPN in the past and although it is an important option to have and is saving the lives of many of my friends with the same conditions (Motility disorders or Digestive Tract Paralysis) as me, I’m not ready to go back on it at this time.

Our second option was a whole intestinal transplant. They would remove my stomach, intestines, and colon and replace with someone else’s stomach and intestine. The colon would not be replaced. However, this is not a guaranteed fix and with my connective tissue disorder there’s a good chance it wouldn’t heal correctly or my body would break down those organs with time, too. It’s not a good option for me at this time and is left at the bottom of my list, which leaves me with only one option for treatment.

For now, we are trying to get a new treatment approved by insurance. This is IV immunoglobulin therapy. Essentially we would be trying to reboot my autoimmune system and hoping that my body would stop fighting itself and in that process my GI tract would speed up and start working better. This would most likely be a monthly treatment. It is a very expensive treatment and can be hard to get approved, but working with multiple specialists, we are hopeful!

I also plan to look into some more natural and homeopathic treatment options like natural antibiotics and supplements, acupuncture for pain, and multiple other things that have been suggested by all of you!

I am trying my best to find a better treatment option and work toward a healthier self. Thanks for reading and thank you for all of your thoughts, kind words, and love that you continue to show me. It truly makes a world of a difference!

First Post– Holiday Spirit

Hey guys! So, for my first blog post I didn’t want to start out with anything too heavy, but with Thanksgiving only a week away, I thought why not write a bit about what the holidays are like for someone living with chronic illness!

This will be my 4th year of holidays majorly affected by Gastroparesis. In fact, my Gastroparesis started in November of 2013, right before Thanksgiving. Little did I know, three years later I still wouldn’t be able to eat a Thanksgiving meal!

Although I really miss all of the delicious foods that I loved eating throughout the holidays and sometimes this time of the year can be stressful; for the most part, I still really enjoy the holiday season. I love to cook and bake for others and occasionally I can make something that I can have a bite of, too. I also just love the holiday spirit that seems to brighten everyone’s mood during this time of the year.

My health has really taken a hit this year, and I’m not able to do a lot of the things I love to do like volunteer, babysit, go to school, and regularly spend time with people outside of my home. However, I do intend to make the most of the holidays in every way I can!

Here are just a few of the things I love about the holidays:

  1. Picking out and decorating the Christmas tree
  2. Baking Christmas cookies of all sorts
  3. Snow—even though I barely leave the house when it’s so cold!
  4. Christmas movies
  5. The gift of giving— whether it’s Christmas shopping, giving away Christmas cookies, or donating to the less fortunate, I always find that the holidays are full of generosity and I love to participate in the giving 🙂

This holiday season I will be taking each moment to enjoy life’s small gifts. I encourage you to appreciate everything you might normally take for granted—a functioning GI tract, the roof over your head, a mother who cooks for you, and just being here to celebrate another holiday season.