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!

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.

 

 

 

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!