A Response to The AHCA From One of The Millions Left Behind

Yesterday the House Republicans approved the American Health Care Act—their replacement for the Affordable Care Act. Although it still needs to pass through the Senate, my heart, along with the hearts of many other Americans, was left very heavy after this vote.

Although Donald Trump claimed that his bill would provide health care for everyone while also leading to tax cuts and a better budget for our country, if you look deeper into the bill you will see that this is a blatant lie. The AHCA claims that it “maintains protections for people with preexisting conditions, with some important exceptions.” It then asks you to “see waivers below.”

The waiver section of the bill allows for state-level full repeals of Obamacare. Each state has the ability to apply for waivers to opt out of regulations and protections from the ACA. There are three main waivers for each state:

  1. Charge older people more than five times what they charge young people for the same policy
  2. Eliminate required coverage, or essential health benefits, including maternity care, mental health, and prescription medications
  3. Charge more for or deny coverage to people who have preexisting health conditions including but not limited to cancer, diabetes, and domestic abuse

Okay… so #1… aren’t we supposed to be moving away from inequality in America? Clearly this ageist fine print is harmful towards our senior citizens when in reality we should be taking care of our elderly, not robbing them.

#2…. Our maternity care is already extremely lacking compared to other industrialized nations, so why are we moving further backwards? We should be extending our maternity care and offering longer paid leave for both parents after childbirth, not taking maternity care away. As for planned parenthood, only 3% of their funds go towards abortion, so let’s not even talk about how ridiculous it is to defund them when they provide extremely important care to high risk women all over the country.

Our mental health system is already WAY too hard to work with. Individuals with severe mental health struggles are living on the streets, struggling to find homes and jobs, and trying their hardest every day just to get through the day. If someone with severe bipolar, depression, schizophrenia, paranoia, or a personality disorder is left without a support system and doesn’t have a treatment plan, it can be extremely difficult for them to succeed or even survive in this world. Why would we make it harder for them to get adequate treatment? Mental health is not at the fault of the individual, and we should not treat them like it is.

As far as prescription medications go, I can tell you I max out my insurance in a month or two max every year. I’m on 20+ prescription medications if you include all of my oral medications, tube medications, IV medications, infusions, and tube feeds. If I lose my health insurance, I won’t be able to afford these treatments and I don’t even want to think about what happens then.

#3.. okay this is where I really get heated, and considering I’ve already been typing up a storm, you’d better prepare yourself.

Let’s start with the quote from our good GOP friend, Congressman Brooks, “My understanding is that the new proposal will allow insurance companies to require people who have higher health care costs to contribute more to the insurance pool. That helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done good thing to keep they’re bodies healthy. And right now, those are the people, who’ve done things the right way, that are seeing their costs skyrocketing.”

So basically he is saying that “good people,” aka healthy people, should pay less because they have “lived better lives.” Well, I am a sick person. I am a sick person who is likely going to be sick for a very long time. However, I am a good person despite being ill. Before getting sick, I was a good student, I volunteered regularly, I ate healthy and went gym all the time, I was an athlete, I got into a great college, I had friends. Now I cook for my family, I take care of myself the best that I can, I still volunteer as I am able, I write and paint and have a positive attitude about my situation. So, what makes me less of a person? I’m not trying to brag about myself, I’m just making a point. I know not all GOP congressmen and legislators are quite this dumb, but people with illnesses do not deserve to be treated with disrespect.

But chronic illnesses like mine aren’t the only ones that this bill considers “pre existing” conditions. Yes, my illnesses are pre-existing, but so are cancer, depression, anxiety, acne, and over 50 other conditions. What’s even more shocking is that rape and domestic abuse are considered pre existing conditions! Uhm.. excuse me? In what world is it fair to make the victim of a sexual assault pay more for health insurance than her attacker pays? What about the husbands who abuse their wives? What affect will these rules have on the victims coming forward? Will attackers pay more, too? Where is the equality in that?

What makes my life worth less? The fact that I have a chronic illness? Is the life of someone with mental illness worth denying them a psychiatrist? What if it costs them their life? Is a rape victim’s life worth less than that of their rapist? A domestic abuse victim less than their spouse? Is a special needs child’s life worth less than their sibling or classmate? Where does it end? Where does this new America stop choosing money over lives?

Adventures of a Tubie

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.

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You’d never know each of us have tubes, central lines, and a handful of chronic illnesses! This time together was so precious.

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!).

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Sometimes you just gotta pretend you’re a normal 21/24 year old and duck face it out 🙂

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.

Thanks for reading.

xoxo

Happy Birthday, Mom!

I’ve always been told that I’m a lot like my mom. We are both strong willed (maybe stubborn), hardworking, and loving women. My mom is more free spirited and outgoing than I am and loves to be spontaneous; while I tend to like to have a plan, she’s always up for adventure. Although I’m slightly more “rational” as we put it, we both always look for the positive in the situations we are in and help each other hold on to hope.

I am so blessed to have a mother who not only went above and beyond in my childhood but who continues to care for me today– in my adulthood! Not everyone is lucky enough to have even half of that.

My mom goes above and beyond each day to help me and my sisters be as healthy and as happy as we can. She works a full time job and parents full time for 3 of us! Having a grown child who is as sick as I am is more than a full time job in itself, yet she manages a job and my sisters as well. Of course having a wonderful husband and father helps, too 🙂

Although my mom never planned for it, she has become my at home nurse. She overcame her squeamish side and learned how to change a port needle, prep feeds and fluids, handle all of my feeding tube supplies, deal with my fainting, and so much more. She’s incredible.

My mom is also one of the strongest women I know, both emotionally and physically! Neither one of us is great with expressing ourselves emotionally, but she’s been through so much yet remains so strong. She supports me and the rest of our family through everything and always advocates for us without hesitation.

I could go on and on about my mom and all of the amazing things she does, but this is a post to celebrate her birthday! So, happy birthday, Mom! I hope your day is fabulous. I love you so much. I wouldn’t be able to do this without you. Thank you for fighting beside me every day❤

My Little Sister

The day my little sister was born, two days after my 4th birthday, was one of the most exciting days ever – okay maybe just the most exciting I’d experienced so far in those four years, but that’s still pretty exciting. 😉 I loved dolls and dress up, so getting a baby to bring home—a real, live baby — was a dream come true!

I practically lived in Laura’s crib. I loved cuddling her and helping mom get her dressed, fed, and bathed. She was super exciting, even though she pretty much just slept, cried, ate, and pooped. (Sorry, Laura 🙂 ) I did, of course, have a little jealousy since I wasn’t the baby any more and I had to share everyone’s attention, but in general I loved the new baby.

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To the point, Laura’s all grown up now and today is her 17th birthday. I can’t believe what an incredible person she has become. If you know Laura, you know she’s full of spunk and passion. One of the things I admire most about Laura is that she is totally confident in who she is. She likes to be appreciated and recognized for what she does, but she doesn’t need approval from others to feel good about who she is. I wish everyone (including myself!) was that comfortable in their own skin. She also has such an incredible view on the world and always stands up for what she knows is right. Whether it is to a friend, a stranger, a teacher, or a parent, Laura always speaks her mind and she does so with great passion and articulation. She is brilliant with words and is strong enough to speak out—something else I, as a huge introvert, greatly admire about my younger sister.

Laura is beautiful both inside and out—she takes kick ass selfies, something I’ve always envied. 🙂 She is also full of compassion and love. Laura has grown up as the younger sister of a “sick kid,” which is an extremely difficult role to play. Since Laura was in middle school, she’s had to watch me be passed from doctor to doctor and grow sicker and sicker all while she is trying to live a normal life. The stress that puts on her is huge, but she handles it with such a great attitude.

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Because of my illness, my needs are often the priority in our family. My parents have to focus a lot of time and energy on me. They spend a lot of time taking me to appointments, helping me with medications and tube feeds, and doing other things that are required because of my health. Although my parents are incredible and juggle having both of us here at home so well, it is still really difficult on Laura. However, you hardly ever hear a negative word about this situation come from her.

Laura was supposed to be the only child left in the house when I graduated from high school 3 years ago, but instead, I got extremely sick (again) half way through my first year of college and had to come home. Since then, I’ve been at home and my illnesses have gotten progressively worse. For Laura, this means she has watched my health deteriorate over the last 4 years while she is just trying to make it through the crazy high school years.

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Laura has traveled to different states with me for doctors appointments, stayed with me countless days while I’ve been inpatient in the hospital, laid with me in bed when I was in too much pain to move, and literally picked me off the floor when I’ve fainted. She also regularly brushes and braids my hair when I’m too weak or tired to do it myself, she (and her boyfriend, Sam) pick me up or drive me places when I can’t drive, she gives me piggy-back rides to help me save my “spoons” (aka energy), and she is always looking out for me and making sure I’m as comfortable and cared for as possible. Laura is one of my biggest advocates and supporters through this crazy journey. She’s always spreading awareness and reminding people of how lucky they are to be able to eat or go to school or work when some people can’t do any of that because of illness. Laura has let this situation shape her into such a wise and mature person and I’m so proud of who she is becoming.

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Being the sister of a sick kid isn’t easy, but Laura is incredible and I’m so lucky to have her. Laura is often greeted with things like, “Hey! How is your sister?” or “Is Rachel feeling any better?” Although Laura knows why people so often ask about me, she struggles during my hard times, too. Being a loved one of someone who is so sick is extremely taxing, so I encourage everyone who knows Laura or anyone else with a sick sibling or child to ask them how they are and express interest in their lives before asking about the other person. Laura has a passion for animal rescue and regularly fosters dogs, she is a great artist and writer, and she loves her criminal justice classes and is looking forward to a career in that field. Laura is so smart and has such a great perspective on things; if you get a chance to have a real conversation with her, definitely take advantage of it.

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I’m so grateful to have Laura as my sister. Although my illness causes us all great stress and worry, it has also brought us closer as a family. Laura has become one of my care takers, my biggest support, and a best friend. Happy birthday, Laura! I love you to pieces!

Upcoming Birthday

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 😉

My Feeding Tube Journey

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.

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Picc Line AND NJ tube! Ick!

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.

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Tubie– this is about one year post op. I actually continued to lose weight for awhile.

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.

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This is where I get my tube swapped out!

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.

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This is the smart pill– a pill I swallowed and it tracked the movements of my GI tract and told us how each part worked (or didn’t 😉 ).

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.

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My tube and my port peeking through!

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!

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.

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.