Amanda: The Real Life Journey of A Newbie Tubie Volunteer

“Hiyo- I’m Amanda Hall & I used to be a tubie and am still living with chronic illnesses! I woke up November 3 of 2012 with what i thought was the stomach flu, but I never got better. I was told I had the second most severe case of Gastroparesis at Cleveland Clinic in Ohio, actually same results as Rachel, the NewbieTubies director! Eventually, I chose to use my rare for research. When i first got my diagnosis, i thought gastro-what?! This journey has taken me on a wild ride, but dang did life become so much more beautiful than I could have ever possibly imagined.

6 years ago I was 175 pounds, a college volleyball player, and a personal trainer. i worked 2 jobs and went to nursing school; I studied health, fitness, and nutrition like it was my job. I went to bed completely alive, and in one 8 hour night of sleep, I woke up undeniably dying. i lost 50 pounds almost immediately and my journey with feeding tubes started 6 months into this wild ride. My first tube was an NG tube, then a G tube, then a J tube… then a G-J tube. I didn’t have time to stop and think about what was really happening- I was just grasping to an inkling of hope for a chance of ‘normalcy’ again. After multiple attempts, my body wouldn’t accept a feeding tube, and I graduated to a hickman catheter for tpn. I know this all may seem overwhelming at the beginning, but namaste!- this tube is going to GIVE YOU LIFE!💫

Throughout the many years of fighting so desperately, my body started recating to every adhesive and physically rejected every forein object they put into my body. I would cycle thru feeding tubes like I was at the carnival. But, man did those feeding tubes allow me to be a kid again. they gave me energy, adequate nutrition, vibrance, and kept me alive when my body couldn’t figure out what it was supposed to do.

After 5 years and 24 extensive surgeries, I reached the end of my treatment options and chose to remove my stomach in the hopes that it would help improve my quality of life and offer reasearch for future generations who will be struggling behind me. In December of 2017, i went in for a partial gastrectomy, but because of complications, i came out with a stromach the size of TWO TABLESPOONS! My recovery was long and full of complications, but I am confident in saying that my Gastroparesis has been put on the back burner, rather than igniting a wildfire every. single. day. So worth it.

I graduated indefinitely from tubes in August of 2018 when my body began reacting to every tube placement with sepsis, and the life-threatening risk became greater that the life-saving reward. My last feeding tube was removed in March of 2018 due to severe sepsis, fungal and bacterial infections. i thought i beat it, but life would never be the same for me again. Sepsis and Gastroparesis quite literally knocked me off of my feet when I was hit with dysautonomia 3 months back.

As part of my treatment, i go to an infusion clinic 3-4x per week for saline infusions. Although I can’t have a tube permanently anymore, I am still a tubie more than I am not!

Yes- it’s scary, uncomfortable, disheartening, and frustrating… but I found that I was so much stronger at my lowest weight with a tube hanging out of my chest than i was at my highest weight, obnoxiously fit before I got sick. It’s all about perspective. and being kind to yourself.”

*Amanda shared her story with us and has joined me and my supporters in our journey to continue Newbie Tubies and grow as we can. I receive applications every day, and without the help of my donors and volunteers, it wouldn’t be possible. Thank you, and for more info, check out the section on newbietubies or find us on Instagram @newbietubies. We are always happy to hear from new people interested in learning about the project!*

Rachel

My Opiate Crisis

The opiate crisis. Two words, so much baggage.

I think it’s reasonable to say that most individuals over the age of 15 living in the US today have at least heard something about the opiate crisis. Opiates are bad. Narcotics are addictive. They ruin lives and have a high risk for overdose. Opiates are a gateway drug and lead to use of street drugs & illegal self-medicating. (5th-10th grade health class, yah?) That’s what we learn about the opiate crisis, bad bad bad.

Opiates/narcotics can be dangerous…if used incorrectly or illegally. But for people like me, who are living with multiple chronic pain conditions, this opiate crisis is affecting our treatment plans and more importantly, our quality of life & ability to function.

That said, and all dramatics & sarcasm aside, for those of us living with chronic illnesses, the opiate crisis is not the same crisis that you hear about in the news or in a doctor’s office…

My opioid crisis involves trying to make the very limited quantity of pain medication last the whole month, every month….

and then I have to trek back to the doctor to try to advocate for myself and my needs when a change in dosage or medication is needed– I’m really shy/bad at confrontation and in person advocacy so this is a big stress for me.

My opioid crisis is struggling to make each dose last long enough; dealing with a connective tissue condition and genetics that make my body metabolize pain medications too quickly has made treating my pain very hard, high doses of pain meds are hard to get with all of the new FDA laws that are in place due to recreational users and ODs, which of course have nothing to do with my case, but laws are laws and now it’s been made my crisis, your crisis, and that of every addict or legal pain patient who uses these meds.

My opioid crisis involves choosing between being able to function during the day or being able to sleep at night. I’m an artist and a writer, but I can’t paint or write because of the pain in my hands, wrists, and arms. I can’t stand too long, sit still, or lay down without having severe pain in my back and hips. When does the pain end? What is more important, sleep or being productive and (semi)functional during the day?

My crisis means facing the consequences of others’ actions; I don’t abuse drugs nor do I purchase them illegally or without a prescription. I use pain meds because I am unable to really live without having a way to try to manage the pain, no different than how I work to manage my nausea or my migraines, any of my symptoms that can affect my quality of life.

My opioid crisis may not be “normal,” but it’s real. I know so many other girls going through these trials, we are lucky to have each other, but the stress and the guilt and the disappointment from disappointing doctors and failed treatments or lack of access to medications can be overwhelming. There are no words to explain how deeply the system can affect us– and not just because of opiates.

I would love to find something aside from narcotics that would relieve my pain effectively. I want to paint for hours with no shooting pains in my arms, hands, or back, and I want to type without my wrists feeling like they’re black and blue with bruises every time they hit the laptop/keyboard. I want to sleep all night and run a full bag of tube feeds without waking up in too much pain to sit up.

I don’t want to be on narcotics. I have so many goals, and none of them include narcotics, but they also don’t include severe, widespread joint and nerve pain. I also understand why there are strict rules on medications like narcotics. I wouldn’t want them to be easily available to everyone. But that doesn’t mean that those who are truly, legitimately suffering– whether it be acute (post op, injury, car wreck) or chronic (fibromyalgia, arthritis, ehlers danlos syndrome, CRPS, etc.)– should have to continue to suffer when there are actually medications that could make a difference!

Not all of my conditions have treatments. Not all of my symptoms can be managed. So if I find something that helps, and I have doctors saying it makes sense, why does it have to be so damn hard to get a hold of these medications? This system is just mind boggling sometimes.

I want to be a person, not a patient, not a statistic in a research study, just Rachel.

That’s a glimpse at my opiate crisis.

 

The Significance of the Holiday Spirit; Spreading Love and Generosity

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

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

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Our favorite gifts… donut pillows and blankies 🙂

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

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

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

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Baxter stayed up for Santa 😉

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

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Breaking out the festive tubie pads 🙂

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

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

My Art: A New Coping Mechanism

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

Kids Get Migraines, Too!

When I was young I suffered from headaches and abdominal pain that was left unexplained for a long time. For awhile it was labeled as “growing pains” or blamed on being too tired or anxious. However, being a 10 year old with daily headaches and regular pain in my abdomen was probably a little bit off, looking back on it. Now I’m an adult and I’ve been diagnosed with an armload of chronic illnesses that explain those symptoms, but I know there are a lot of other little kids out there who are probably going through the same thing that I did, searching for answers and validation.

Almost 5% of school age children suffer from migraines during their youth. The onset for migraine headaches in children is 7-10 years old. If your kids are complaining of headaches, nausea, light sensitivity, sound sensitivity, or any other symptoms that seem off to you, take them seriously. Take them to a good doctor who will really listen to them. Their complaints could be serious, even though they’re just kids. What can be comforting for parents (and children!) about migraines in children is that kids who have migraines in childhood usually grow out of them after puberty or in early adulthood and may not experience them again.

The stomach pain I complained of as a kid turned out to be something called an abdominal migraine. Most people have never even heard of this type of migraine! Abdominal migraines are actually seen mostly in children, typically children around ages 5-9, but they can be present at any age. The main symptoms of abdominal migraines are pain that stems from the belly button or midline area outward, nausea, loss of appetite, and can include a headache. Symptoms can last anywhere from an hour or two to a few days at a time and can easily be confused with other

Abdominal migraines, similar to migraine headaches, can only be diagnosed clinically. There is no blood test or imaging that can show these. First you rule out any other condition that could cause these symptoms, you talk about family history to see if anyone else suffers from migraines, and then you go over symptoms and the doctor determines what the best treatment plan would be. It can be extremely difficult to control both abdominal migraines and migraine headaches; there are very limited medication options for children and the adult medications and treatments are also very hit or miss.

As someone who lives with chronic daily migraines as well as abdominal migraines, I can tell you just how debilitating they can be. No child should have to experience such pain and discomfort. I hope that with continued awareness and research we will come up with many treatment options and then a cure (or maybe the cure will come first!) for migraines in both children and adults.

Keep in mind for your own children as well as for any child you may work with or spend time around, kids can have migraines, too. Children can experience most of the same pains that adults can, so we have to hear them out when they’re telling us they are experiencing consistent discomfort.

 

 

 

If you are a parent, a grandparent, a teacher, or just someone interested in learning more about migraines in children, please check out the link below for more information about signs/symptoms and different types of headaches to look out for in children.

Migraines are so much more than just a headache. Be thankful for every pain-free day you have and take full advantage of your healthy self; every day is a gift.

 

 

 

 

 

There’s a link below to a helpful website for those who want to know more about childhood headaches,  signs/symptoms, and possible treatments.

 

Thank you to the Diamond Headache Clinic for providing these facts.

 

 

 

https://www.diamondheadache.com/

 

A Glimpse at Inaccessibility From a First Time Wheelchair User

The other day I had my first experience using a wheelchair in public. Out of four and a half years of being chronically ill I’ve reserved wheelchair use to rolling in and out of the hospital, mostly out of pride. My illnesses limit me in so many ways, I didn’t want to allow it to take any other ability from me either. So instead of using a wheelchair as an aide when I was sick and weak, I powered through or sat on the sidelines. Recently, I decided letting life go by because I’m too stubborn to admit I need help is silly and I ventured out for a day of shopping with my girlfriend. I made it through the first few stores leaning on the shopping cart as support but by the end of the day it was clear I needed to use a wheelchair. I expected the stares from strangers but what I didn’t expect was the blatant inaccessibility “accessible” places are.

Because I was too weak, I required my girlfriend to push me. This tied up her hands and crossed out the option of a shopping cart or basket to carry our items. Suddenly I found lap full of various things we wanted to purchase. While this wasn’t a huge pain this time, it would’ve been a problem if we were buying more or heavier items. How can shops expect a wheelchair user to navigate with either a small basket attached to a motorized cart or no basket at all?

The second thing that was an issue was my sight line was cut in half making it impossible to see the higher selves and options on them. While shopping in one of my favorite stores, I found myself able to see only about half of what I normally experience while shopping. And forget trying to reach anything on a high self, it was hard enough to grab things from my sitting position in the wheelchair.

But by far the biggest problem we ran into (pun intended) was the fact that the aisles weren’t wide enough. I’m sure anyone will admit the aisles in stores are narrow and navigating it with a shopping cart is hard enough, but I never imagined how hard it would be to find my way in a wide wheelchair that wasn’t exactly fantastic at taking turns. We found ourselves bumping into corners and trying to wiggle our way out of the line of other shoppers trying to pass.

Until this recent experience, the inaccessibility of stores was never forefront in my mind. I knew my friends who use wheelchairs often encountered issues while shopping, I just never realized how frustrating and inconvenient it was. Making sure spaces are accessible is extremely important, but so is ensuring those spaces are truly accessible for all.

Blog by Carolanne Monteleone

You can find more by Carolanne @aheartforhumanity.wordpress.com

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!