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!