Passion Over Predictability

Its really easy for my mind to go towards thinking about how my illnesses have stolen any predictability about my future; how they took me out of school, have forced me to accept that I may never have my “dream” job or may not even be able to work a “real job” at all. For someone who loves to plan and always wanted to know what was next, living in such uncertainty can be daunting. I fear living a life lacking companionship and never getting to fall in love or find my true soul mate, but then I’m reminded that my illnesses have brought to light so much in myself  that I never would have discovered if I hadn’t gotten so sick in the first place.

Instead of focusing on the things I likely won’t be able to do, I’ve started to consider all that I CAN do. I’ve discovered so much about myself that I didn’t even know was there; I have new passions and I’ve discovered talents I had no idea were hidden within me until I got sick and I have a new understanding and a new level of empathy both for the people and the world around me.

Ive strengthened relationships with my loved ones and lost many people who weren’t able to stick by me through my trials, I’ve broadened my outlook and see things in such a new and brighter perspective, and I’ve found passions that give my life more meaning than just being the “sick girl,” no matter what my body has in store.

Although I can’t eat, I’ve developed a relationship with food through cooking meals for my family. I love creating new recipes and trying new techniques with home made goods. Some people are shocked by my love for cooking, but it’s something I’ve always loved and now it’s a way for me to “enjoy meals” with my family.

I’ve rekindled my passion for photography and developed a love for painting– this one I don’t think anyone would have expected. I’ve never been the artist of the family, and although I can’t draw anything, I do have an eye for color, and I’ve found some painting techniques that work for me. Because I’ve discovered these passions and because people (not just my parents 😉 ) started buying my paintings, it has given me hope that even if I can’t graduate from college or work as a full time behavioral therapist like I had hoped, maybe there’s something more out there for me.

I’m blessed to have a community here at home as well as through chronic illness support groups online that support me in every way they can. I’ve had so much support from my local community and I’m so so thankful for each and every one of you. I also have a truly amazing family that does everything from help me with medications/treatments, drive me places, and help with any other around the house/medical things I need and they also help me be able to follow my passions and set me up for success. Not everyone in my situation is so lucky.

Chronic illnesses are exhausting and isolating, they take away so many parts of our lives that we use to identify ourselves. If you’re going to survive it with some sanity, you have to make a choice to not let your illness be the only thing that defines your life– it is always part of what defines you, but if you don’t have other distractions and passions, you’ll just about lose your mind.

 

Recovery: The Real Challenge with Surgery

The past two weeks have been even more challenging than my “normal” for both my body and my mind. I had surgery two weeks ago to place a new/additional feeding tube and we ran into some challenges and now I am trying to heal and recover.

I’ve had to spend more time in bed since getting home from my surgery because I’ve been unable to move much on my own. For the first week I couldn’t sit up, stand, walk, sit down, go to the bathroom, brush my hair, or do anything for myself. Being 100% dependent on other people is really hard, regardless of the fact that I was already disabled and very dependent on my parents for so much even prior to surgery.

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Kevin needs his new tube placed!
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Baxter alerting me.

I have to admit that the first week or so post- surgery is all a blur. There was lots of pain, many doctors, a painful car ride home (or two), a lot of sleeping, medications, ambulance, pain, another ambulance, an awful ER, pain…. But what I do remember is that both of my parents were right there by my side the whole time. There was never any talk of hiring a nurse to do the hard work or asking another family member or close friend to come help so my parents could go back to work. Every day I had at least one if not both of my parents there taking care of me, no complaints or mention of using up their sick days.

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3 tubes?!

For the first many days I slept 20+ hours a day with the help of pain medication, nausea medication, and sedatives, which all together helped make me more comfortable. After my ER trip on Monday/Tuesday I stopped taking the heavy pain medications because they delay gastric emptying so I also stopped sleeping and instead started having major insomnia again. By Wednesday/Thursday I was starting to walk on my own and eventually getting out of bed by myself, too. Although I run out of energy quickly and my pain levels are still severe, every step forward is worth a celebration.

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Our one and only trick or treater 🙂 My favorite visitor!
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Always blessed and spoiled by my parents’ coworkers!

Having such a supportive and involved family made all the difference for me; I didn’t have to worry about keeping up with meds or finding a good nurse or anything because my parents and sister were on 24/7 “Rachel Duty” for as long as I needed them. We also have an incredible community that supports me by sending cards, flowers, and gifts but they also support my parents at work and through facebook and texts/calls of support and well wishes. Being the parents and care takers of a young adult as sick as I am is no easy task and it’s extremely important to have that support.

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Mom sleeping in the ER.

Surgery is tough, but recovery is hell. Waking up each morning in major pain and knowing it’s not going away isn’t easy on anyone physically or mentally, but each small improvement or sign of progress gives me hope. Life is precious and every day that your body is functional and pain free is a gift; I encourage you to take advantage of every day and live life to the fullest, always follow your heart and do more of what makes you happy. Find joy in every day.

Xoxo

Father’s Day

People always say that everyone knows each other in a small town; well I grew up in a small town where my dad was the principal at the local elementary school, so in my experience, that statement in pretty accurate. For as long as I can remember I’ve had strangers coming up to me in stores, schools, restaurants, and on the sidewalks just to tell me how amazing my dad is or reminiscing about their times with him.

My dad isn’t just known around town though, he is known throughout the county as the best administrator and an all around great guy. When he left one elementary school and moved to the next, teachers from the first applied for jobs at the new school to try to stay with him. When he left the last school and started working in Central Office, teachers and parents were devastated; it’s been a year and I still have people telling me how much they miss him and all he did for that school.

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Dad did a fundraiser and got taped to a wall! Did I mention he has a great sense of humor? 🙂

My dad is known to be incredibly smart and empathetic; his co-workers used to tell me all the time that they loved him so much because he cared about everyone. He will always listen and he will always do his best to help someone if he can; he’s about doing what’s right and what’s going to help people. He always wanted to help the children, the parents, and the teachers and their families. I could tell so many stories, but watching him work and do all he did for his students made me so proud to be his daughter.

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One of our favorite places! And of course, laura photo bombs!

 

Dad loves his job, and he has always been incredibly passionate about it, but if there’s one thing he is even better at, it’s being a dad. (sappy, right?) Dad was blessed with three daughters—we like to joke about how surrounded he is with females all the time 🙂 If you have daughters, you know we can be a… challenge. We can be stubborn, have attitudes, have boy problems, give killer silent treatments, hold grudges, be a little emotional, and pout like crazy. But we also love hard, show gratitude, laugh a lot, give great hugs, aren’t afraid to express emotion, love family time, and so much more. I think my dad would tell you we are worth the hard work.

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I’ve looked up to my dad for as long as I can remember. He used to tuck me into bed and say my prayers with me every night. We had “special time” with Dad when we were little where he would take us girls out without mom and we would get pretzels at the mall or see a movie and he would buy us presents. I was SO excited when I found out he would be my principal in 3rd grade, even though it meant we had to move to a new town. We shared a love for oreo ice cream. He took me to all of my swim practices and out of town meets. My dad taught me how to drive, I went to the same college he did (hopefully I’ll go back!). Now he drives me to the doctor all the time, spends countless hours talking to doctors, nurses, insurance agents, and pharmacists on the phone, and is by my side no matter what.

Life is unpredictable and it’s thrown a ton of curve balls at us, but my dad is always around to help figure it out.

I love you Dad, Happy Father’s Day!

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!

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.