A Letter To My Body During My Chronic Illness

Dear Body,

I have some important things to clarify with you and even to apologize for. You have cooperated with my soul through everything from jumping out of planes, riding on motorcycles, dancing in competitions, kayaking in oceans and lakes, running through rainstorms, lifting weights and more. You were an active, fit body. Then, we got sick.

For the past 18 months, you have gone through hell. You have fought hard. You have been under attack and still try your best to function. You kept me going as long as you could while I continued to work as a nurse and care for critically ill patients. You had to adjust to getting formula for nourishment, pumped directly into your small intestine. You had to fight through small fiber neuropathy and still try to help me put one foot in front of the other.

I have pumped you full of chemicals and then gotten mad when you presented with a few negative side effects. I have been so frustrated with you when you don’t have the energy to get me out of bed. But I realize now, that you are busy waging a war deep inside you– a war that no one can see or even identify.

I get upset with you when my abdomen swells, as if I am pregnant. I curse your name when my legs give out at the end of the day and I have to use my walker to get to the bathroom. I tell you that you have become stupid when I can’t remember a recent conversation or a story I was about to tell or even what I was trying to do. As I take a step back, I remember what you’re going through. Your stomach is paralyzed. When I can no longer block out my hunger, I fill you with food that has no place to go and no way to break down. So, of course you swell up and cause pain! You have foot drop and severe nerve damage in your legs. So, surely you can’t walk around all the time. You have experienced a significant cognitive decline and lost a large number of IQ points. That is not your fault. The disease you are up against has won many battles, but you continue to fight the war.

When I look at you, I see scars. Your neck and chest have big scars. That is because last June, they put a port under your skin. The surgeon made a mistake and had to cut you open two more times to put a central line in through your neck and down into your heart. Your abdomen has six incisions in various places from three laprascopic surgeries. Two of those surgeries took place before this illness even began because you have been dealing with endometriosis since you were old enough to have a period. You have a big scar that looks like a second belly button. That is the scar you should be most proud of. I know I have learned to be proud of it too. That scar is a reminder of the G-J feeding tube you sported for 8 months. That site bled and caused me a great deal of pain for almost the entire time you had it. When the complications got bad enough, I pulled that tube out of you myself. I cared for and protected the open hole that remained for several weeks.

Summer approached, and it was time to try on bathing suits. Your hips were huge. I couldn’t even stand to look at them. Many of my clothes didn’t fit right because of them. Once again, I finally stopped to think about what you had endured to get us here. For four months, in the winter and early spring, my doctors injected you with a medication called Lupron. They wanted to keep the endometriosis under control since there were plenty of problems already plaguing your abdominal cavity. That medication induced menopause to prevent the uterine tissue from growing. We went through menopause at the mere age of 23. I cried when the nightmares and hot flashes woke me up at night. It wasn’t your fault. You were struggling and I brought all of that upon you. After the injections stopped, the menopause was slowly reversed. The side effects diminished, but you had gained weight on your hips. I continued to be disgusted by the weight gain considering I couldn’t even eat anything! The gastrointestinal doctors assumed my nutritional status was under control because you weren’t losing weight. As the hormone reversal continued to take place, some of the weight was lost and we realized I really was not getting enough nutrition. The hormones covered up the outer image and fooled the scale, but really you were starving inside.

They put you back on TPN so you would receive nourishment through your venous system. I know how hard that is for your heart, liver and kidneys to process. The doctors check your blood counts and liver panel every week, but we all know that at any point, you may become too tired. Your liver may start to give up the fight and slack off on the enormous task it has been forced to accomplish. I understand. I am prepared for that possibility and for that day, whenever it may come.

You have gone above and beyond. You have been dealt more problems than most bodies ever have to face in an entire lifetime. But you are doing it all at once. You have been under attack for over a year and a half. You have also never stopped fighting for me or with me. I am working together with you now. We are united.

I want you to know how sorry I am for blaming you, cursing you, and hating you. You are beautiful. Now, when I look at you in the mirror, I see a warrior. I see battle scars that physically represent what you have overcome. Your hips are trophies for going through menopause nearly 30 years earlier than any other woman; Not to mention, it was chemically induced and much more rapid than the natural version. I am in this with you, you are not alone. I see what you have done for me. I see you. You have maintained the integrity of many of my looks, to the point that a lot of people think I don’t even look sick. That is pretty impressive considering what is going on beneath your surface. You deserve a hell of a lot more credit than I have given you. I have come to terms with the fact that you may not be able to fight this forever. The time you have given me so far is such a gift. I promise not to take it for granted. I know you can tell that part is true because I am still dragging you out on modified adventures. I am making the most of this time while you fight. When you grow tired though, I will be ready.

I could not do this without you. I am grateful that you are helping me through this tragically beautiful journey. The next time I put on my bathing suit, I will rock the hell out of it. I will display you proudly. I love you, body, and I want to be your friend.

Sincerely,

The Heart and Soul You Have Fought to Protect

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Before the illness (Fall, 2015)// Spring, 2016// Summer, 2016
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Celebrating Nurses’ Week 2017 as a Sick Nurse

January 21, 2016 at 0730:

Sixteen months ago, I stood at the bedside of my critically ill patient and flushed his arterial line after checking for a blood return. I reinflated the pressurized bag of saline, checked the output from his wound drains and chest tubes, and dopplered his legs to listen for his weak pedal pulses that were a result of the vasopressor medications that were keeping the majority of his blood near his heart. I used my stethoscope to auscultate his heart and lung sounds. I reviewed the settings depicted on my patient’s ventilator machine and shifted the positioning of the intubation tube in his mouth. I checked for new signs of skin breakdown and redressed his surgical wounds. I watched the continuous EKG to check for any irregular patterns in his heart rhythm. Then I sat down next to him and began to record all of my findings, his vital signs, and all the settings his medical equipment were set for. He was sedated, but I checked for any indication that he might be in pain. He looked peaceful, but he was barely alive. I untangled the lines from his plethora of IV bags as I watched the sunrise painting the sky outside. Before I left the room to call his family with an update, I squeezed his hand and told him I’d be back soon to check on him.

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May 7, 2017 at 0600:

This morning, as the sunrise was painting the same sky many months later, the alarm on my cell phone went off. I barely heard it from my deep sleep, but I sat up anyways. I opened up a saline syringe and cleaned off the end of a central line with 2 alcohol pads. I flushed the line and connected it to the IV tubing I had primed the night before. The pump played a little tune as I powered it up and initiated the infusion. I untangled the IV tubing and stretched it out to its full length so I could lay back down. The central line I flushed hadn’t been my patient’s; it was my own. My eyes began to close again, and I slept for another 8 hours as my modified TPN solution infused into my venous system. The beeping of the pump woke me up in the afternoon and I laid there for a moment trying to get my body to move. I had to take my empty fluid bag down and flush my line again with saline and heparin to prevent it from developing a clot. I then proceeded to crush my pills and empty the capsules into a spoonful of applesauce. The bite of medicine-filled applesauce would be the only thing I’d eat until 8 or 9pm that night, when my hunger would finally outweigh my desire to remain as pain free as possible.

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The first scenario you read took up about one hour of my day. I was working on a cardio-thoracic surgical ICU where it was my job to care for one or two patients for a 12 hour shift. Many of these patients had undergone open heart surgery  and became too unstable for the surgeons to complete the surgery or to wire their sternum shut again. Those patients were sent up to our unit with something similar to sterile “Saran Wrap” covering their open chest until they had improved enough to tolerate the closure procedure. Some of the other patients were post transplant or had developed serious septic infections or had recently undergone various other major cardiac surgeries.  It was my responsibility to monitor their condition, watch for any decline, and keep some of the sickest patients in the whole hospital alive. The second scenario you read took up about 10 hours of the time frame I previously would have been at work. I am now a patient, but I am also still a nurse. It is my responsibility to care for myself, advocate for myself, and keep myself alive. My shift never ends now, but I couldn’t do it without help.

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Left: My nursing license came in the mail (Fall of 2015). Right: My one year renewal of my license came once I was already ill (Fall of 2016).

I have a homecare nurse who comes to my house every week to draw blood, check my vitals, and change the sterile dressing around my central line. When I am too sick to even be at home, I have had countless incredible nurses in the hospital care for me. When I go to any number of the doctors I see, first I catch the nurses up on the changes in my condition. Every once in a while, I get to see my friends from nursing school when they come to visit from Ohio. I love hearing about their work stories and how many patients they have helped.

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This is Nurses’ Week and nursing has been a huge part of my life for the last six years. For four years, I worked my butt off in the nursing program at Kent State University. I completed my senior practicum in the Cuyahoga Falls Emergency Department . Then, I graduated magna cum laude and as a member of the International Honor Society of Nursing. I knew I wanted to work a high-action job and my 5 year plan was to work in the ICU and/or ED until I could apply for a spot on the life flight team. I went for a ride along with the life flight team that summer, just to be sure it was what I wanted to work towards– and it absolutely was. When I interviewed for the position in the CT-ICU, I realized that was the job of my dreams (or as close as I could get until I had enough experience and autonomy to fly in the helicopters). I was over the moon when I got the job and I loved every second of it. I knew I was making a difference, and that is a feeling I have missed every day for the past 16 months. When I got sick, I kept assuming this was something minor and very short term. Surely they’d be able to figure things out and treat me right away so I could get back to my life. If only I had been right.

During this illness, I have probably been seen by about 25 different doctors. Aside from the gastroparesis, I still have yet to be diagnosed. We know it is something rare and most likely my case is presenting oddly. Many of those doctors have let me down. Some of them haven’t even had the decency to be nice about it. But throughout all of this, I have had many, many nurses. With the exception of maybe a couple, I have loved them all, and I’ve even had a few make a profound impact on me and my quality of life. Nurses are not taught to diagnose. They are taught to care. That is one area I have not been disappointed with, and I have all my nurses to thank for that. I may not be a nurse to patients right now, but nursing has been engrained into my identity. I am proud of the profession I chose and am grateful that all my nurses caring for me chose it as well.

As a patient, I want to take a moment to thank my wonderful and selfless nurses. As a friend, I want to recognize and give a loving shout out to my fellow nurse friends, especially our “Crew” (pictured below). As a daughter, I want to thank my parents for being honorary nurses during my illness when I’ve been too sick to help myself. As a former student and new nurse, I want to appreciate and thank all the amazing professors, preceptors, and orienters for giving their time to shape the minds of newcomers to the profession. And lastly, as a nurse, I want to thank everyone for celebrating what we do with a National Nurses Week. I am proud to be a BSN, RN and I am grateful to be a patient surrounded by kickass nurses. Take a moment to thank a nurse today!

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Behind the Scenes

You might see a picture I’ve posted of myself with a friend or eating a cookie or doing something out in the world, but here’s what you don’t see. You don’t see the handfuls of pills I crush 3x a day and mix with a spoonful of applesauce since I can no longer take even a sip of water. You don’t see the patch on my shoulder administering even doses of pain medication every hour. You don’t see how many events I have to turn down because I can’t get out of bed or even sit up. You don’t see the grimace on my face or the swollen abdomen I get from just two bites of the cookie I may have posted a picture of. You don’t see the debate I have with myself over whether or not I can get away with skipping yet another day of showering because it requires too much energy. You don’t see the nurses who come to my home to draw my blood and assess my condition. You don’t see the number of missed calls on my phone from all the times I was too exhausted to have a conversation, even with someone I love. You don’t see the amount of time I spend calling the pharmacy, the supply company, or the countless doctor’s offices. You don’t see the effort I put into getting ready and putting make up on if I’m going to see anyone or go anywhere. You don’t see the routine I have to set up my TPN and IV fluids every morning or the level of care required to keep my central line taken care of. You don’t see the plastic bandages I have to wrap that central line with before every shower I take. You don’t see the nights I lay awake until 4am because I’m in pain and unable to rest. You don’t see the waiting rooms I fall asleep in or the ERs I’m rushed to. You don’t see the basin in my toilet measuring my urine so I can be sure I’m peeing out the same amount of fluid that I’m putting into my IV to make sure my kidneys are still working. You don’t see all the times I tear up when I see someone eating a big meal that I can now only dream about. You don’t see the bucket full of used batteries that have kept my IV pumps running for 6 months, or the overflowing sharps container contributing to the vast amounts of medical waste my care generates. You don’t see how badly I’d love to go on a date, but don’t because I can’t afford to get involved in a relationship in my current state. You don’t see all the memories I can no longer access or how hard it is for me to articulate an explanation of something, or even try to remember the word for an every day object.

You don’t see these things because I choose not to broadcast them daily. Chronic illness is so much more than what you see. My illnesses are invisible, but my fight is not. What you see is me holding it all together. And I do hold it together. But there are more obstacles in my course than you can see from my social media pages or by spending 30 minutes with me in a doctor appointment. This path that I’m on is unbelievably challenging; but I wake up each day and make the decisions I need to for my well being. I wake up each day and survive.

Sometimes that means going out to the movies or a show. Sometimes that means staying in bed all day, unshowered and in pjs (actually that’s become the most likely scenario). Sometimes that means eating something I’ve craved for days; even if I feel sick enough to regret it a few bites in. Sometimes that means putting on make up and looking #flawless, so I don’t always have to feel like the sick girl. Sometimes that means deciding if I’ll need a cane or a wheelchair that day. Sometimes that means taking enough pain medication to be able to enjoy the monthly visit from my best friend. And sometimes it means eating my noodles in bed so I don’t have to watch my parents eat a full and fabulous meal. Sometimes it means getting a 90 minute massage so I can walk better and sleep more comfortably.

These things are my reality. I make a point not to share these things all the time in order to spare my friends and family from knowing the harsh truths. I don’t want pity and I also don’t want to make anyone feel uncomfortable. But people deserve to know and should know that there is much more to my days than just ‘Netflix & chill.’ Despite all of the scenarios I mentioned, I am not depressed. I am okay. I have taught myself how to cope with this illness. I have already overcome several big challenges in my lifetime (adoption, abdominal surgery in high school, near death experience in college) that helped me to cultivate the skills necessary to face my current struggle.   Many of my coping techniques and universal thoughts are discussed in previous blog entries. A big proponent of my maintained happiness is from daily gratitude exercises. When I wake up each morning, I immediately list 5 things I am grateful for, in my head. It’s actually quite surprising and amazing that even when everything seems to be going wrong in life, there are still such an abundance of things left to be grateful for.

I took you behind the scenes in my life (a brief tour). But it’s important to remember that each of us has a ‘behind the scenes.’ We each have burdens and struggles that we deal with daily. Not all of them are broadcasted. And that’s okay. But we need to love and support each other. We have no idea how hard our coworker’s night was or what our cashier’s morning was like. Life is not a competition. We are all in this together. Let’s offer as many smiles, hugs, compliments, and positive encouragement as we can. Have a happy day, fellow beautiful humans. I know it’s hard sometimes, but you are not alone.

xox

My Mandala

In Buddhist culture, monks make sand art, called mandalas, to demonstrate the idea of impermanence. They work together and often spend days creating these stunningly beautiful and colorful masterpieces. When they have finished, they let people look at and take photos of them briefly. Then shortly after, they begin a ritual to brush the sand away. This process is done symbolically to remind people that nothing in life is permanent.

I have always been drawn to the concept of mandalas, and I find myself turning to that now more than ever. I am currently in a pretty bad place. My Gastroparesis is worsening faster than the doctors are equipped to deal with. I can only tolerate a few bites of food before unbearable pain sets in. And in addition, many of my old neuro symptoms that had started improving are actually coming back. It seems to have correlated with the high fever I had a couple weeks ago. With the fatigue and pain and near inability to eat, it is difficult to leave the house. There aren’t any great treatment ideas on the table either. So I find myself thinking a lot about the life I used to have, before all this illness.

I think about how busy I was and how I was doing all the things I love. I was working 14 hour days in the ICU, jet setting on last minute trips, baking elaborate cakes, going for runs with my dog, lifting weights at the gym, visiting friends and family out-of-state, helping my parents around the house, getting outside every day, driving my car, and dancing in my underwear. I was living the life of my dreams. And instead of that being a happy thing, it has saddened me recently. It’s as if the extent of how perfect things were make my present seem that much more imperfect. But I’ve been looking at things all wrong.

Nothing in life is permanent- not the good times, not the bad times. I never should have expected things to stay the same. That’s too much pressure to put on the universe. Nothing ever stays the same- we grow, jobs change, desires change, surroundings change, everything changes. That’s the track record so far, and yet when we finally get what we want/are happy, we expect that to be the new norm. As if we think that’s what we’re owed. But the universe doesn’t owe us anything. Those expectations we inherently tend to have are selfish. When we get what we want in life, we should rejoice and appreciate and be grateful and know that it will eventually change. Maybe it will change into something even better. Maybe it will all be taken away.

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December, 2015 before a shift in the ICU——-July, 2016 hooked up to my G tube and sporting the new central line

There is a saying that pain is inevitable, but suffering is avoidable. We are bound to have periods of pain in our lives. Suffering comes from having expectations that cannot be met and from holding onto things that we need to let go of. I am in a lot of physical pain these days, and aside from medications that may slightly improve that, it is unavoidable. However, I don’t need to suffer. I kept thinking that soon I would be getting back to my old life. Then another month would pass me by. I realized that even if/when the doctors come up with some miraculous ideas that are able to help both my Gastroparesis and the unknown virus, I wouldn’t be able to jump right back into my old ways. It would/will be quite a process to regain the level of strength and memory necessary to live and work the way I was. And that is a bridge I would be absolutely delighted to cross. But for now, I need to let go of my past and simply remember it as the wonderful, happy, and lucky time that it was. Rather than expect that to be what every day of my life should be like. In doing so, I feel that I am no longer viewing myself as a victim of this situation. And that alone is empowering.

I realize that at this point in my article it may still be hard to see the positive spin I intended to extract from the mandala metaphor. So I’ll try again. It brings me comfort to recognize that if my good times could change so quickly and drastically, then my bad times could too. I have also learned that if I can endure what I have for the last 14 months, them I am strong enough to go through whatever other experiences will be thrown my way during this life.

I am going through an incredibly hard time right now. One that is not fully grasped by anyone unless they have similar illnesses or see me on a daily basis. But despite that being the case, I am not salty with the world for dealing me this hand. I am only 23 and I have already achieved more goals, seen more places, gone on more adventures, loved more people, and jumped out of more planes[;)] than some people ever get to do in their full lifetime. I am not owed anything. But even if I was, I was already given a huge gift. I don’t know what will be next, but I do know that it could be anything. The impermanence in this world can be life’s greatest tragedy and greatest blessing. I have experienced both. And just as the ocean’s waves ebb and flow, I know those two kinds of impermanence will too.

My mandala may have been swept away. But that is part of its beauty. And when I am strong enough, I will start to build a new one once again. xox

Feeding Tube Awareness Week: What it Takes to be a Tubie

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The evolution of a tubie: from my first 3 NJs to my GJ

I have now had a feeding tube (various kinds) for an entire year. It seems appropriate to write about that now with this also being national feeding tube awareness week. My first real experience with a feeding tube was long before I got sick. I was in nursing school with a patient I will never forget. I think this was about three years ago when I was in clinical with an unusually light load that day. I was lending a hand to some colleagues when I heard screaming at the end of the hall. Hoping to help, I ran to the room with all the audible commotion. There were two nurses attempting to shove a tube up this patient’s nose, while a group of students stood at the foot of the bed watching. When you place a nasal feeding tube, you instruct the patient to put their chin to their chest and take frequent, small sips of water to help ease the tube down their throat. What most people don’t realize, is that these instructions require the patient to abandon all natural instincts for the given situation. If someone is shoving something up your nose (which hurts, by the way), you are going to instinctively pull away from them and put your head back further (not at all towards your chest). That’s the first thing to realize. Secondly, to an uneducated patient, a procedure such as this needs to be explained more thoroughly because it may not be clear how a tube going up their nostril is going to end up in their stomach to actually help them. As it turned out, the combative patient in the room at the end of the hall was not trying to be difficult or overly dramatic, as her nurses thought. She was simply scared. I was appalled that when I arrived to find upwards of ten medical professionals in that room, not one of them was consoling the patient. To this day, I’m not sure why this was the case, but when I rushed in and looked in that woman’s eyes, it was like my life flashed forward for a second and I was experiencing my own first nasal gastric tube placement. It was like I already knew that pain. Then, I put myself in her shoes and realized she didn’t even understand what was being done to her. She had been throwing up blood, so time was of the essence so they could quickly decompress her stomach. However, they had to keep stopping and restarting so many times anyways because of the patient’s behavior. So I asked the nurses to stop for one minute while I talked to her. I explained the whole process to her and most importantly, that it was going to make her feel better as soon as the tube was in place in her stomach. I told her who all the people were in the room and asked if it was okay that the other students were watching to learn. Then, I asked if I could hold her hand while the nurses resumed their task. The sweet woman relaxed instantly and cooperated to the best of her ability. Within minutes, the NG was in place. It turned out that the patient was so resistant because she thought they were putting the tube into her brain via her nose! All it took was a short explanation and a little compassion. That served as an important lesson for me once I became a nurse too. No matter how busy you are, or how focused you are on the importance of the task, the patient needs to feel safe and lovingly cared for.

There are many kinds of feeding tubes and patients get them for hundreds of different reasons. Nasal tubes are used first because they are temporary and some can be placed at the bedside by a nurse. For a more long-term option, there are tubes surgically placed into the abdomen. Both types have options for where the tube will end internally. The typical standard is for the final destination to be the stomach. However, many cases require bypassing the stomach. In which case, the tube could end in the duodenum (just after the stomach) or the jejunem (in the small intestine). The nasal tubes are as follows: NG (nasal gastric), ND, and NJ. I had an NJ for 5 months, but I had five different ones. Since NJs are the longest, it is easier for them to get clogged with formula and need to be replaced. Anytime a tube is going past the stomach, it can no longer be placed at the bedside. They must be placed in an interventional radiology room to ensure proper placement. Because of that, all my NJs placements were done under sedation. I didn’t luck out completely though, because many of the diagnostic tests I needed required an NG. So I had my share of tubes shoved up my nose while I was awake too. I often even had to have an NG placed while I still had my NJ in the other nostril. During one of my sedated NJ placements, my doctor chose to surprise me with the placement of a bridle. Bridles are typically used for small children and confused elderly patients. It is basically a string that is tied around the bone of the sinus cavity in the center of the face. It prevents the tube from being pulled out. It is also, in my opinion, one of the purest forms of torture that can be done to a human being. By the time I got home that night, my face was so swollen I could barely breathe or talk. I developed a serious infection in my sinus cavities and couldn’t stand the unwarranted torture any more. I got my medical scissors out of nursing bag and cut that bridle out of my life!

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This is hardly flattering, but it shows how swollen my nose and face were right after the bridle placement (and right before the self-removal).

When I had my NJs, my throat was constantly sore and irritated. Sometimes I even lost my voice for days at a time. I was getting formula for most of my calories, but I was still allowed to eat whatever I felt like I could tolerate. Most normal foods would get stuck around the tube in my throat, so I mostly ate ice cream and sorbet. For those five months, I actually think I lived on formula and Wendy’s vanilla Frostys! After a while, the doctors realized they still hadn’t figured out the root cause of my GI issues and it became apparent that I wouldn’t be able to eat enough to sustain my life without a feeding tube anytime soon. If they continued to use any more nasal tubes, I was at risk for permanent damage to my vocal cords. In June, I was hospitalized to have a GJ tube surgically placed. That type of tube went into both my stomach and my jejunem. The G portion was for the ability to vent air and drain fluid from my stomach. I was still in the hospital on my birthday, so I ate part of a pink cupcake. I became well known on the unit for having a Farrell bag full of sprinkles and pink frosting. The J portion was for my actual feedings of formula. During that same hospital stay, they surgically placed a port in my chest to allow for better access for my frequent blood draws. Unfortunately, a mistake was made in that surgery and my port had to be removed. They took me back for two more surgeries, but eventually I got a working Broviac central line instead.

My Broviac was put to good use once September came around. I was no longer tolerating the formula feeds and had to be put on complete gut rest (meaning nothing through my digestive system at all). That’s when TPN was initiated through my central IV. It included all the fluids, calories, and nutrients I needed. However, I still needed my handy dandy feeding tube– for medications 3 times each day. Now, I’m still on TPN (but thankfully off the gut rest), and since I can’t tolerate any liquids by mouth, I can’t take my meds orally. I am still reliant on my G tube for that purpose. Although, many of you who follow my blog know that it has been causing me a lot more problems and pain than good. And lately, the pain it is putting me through is even more agonizing than before my Botox procedure. Dammit. I am trying to work with my doctors to come up with some sort of plan to be able to remove my feeding tube, even if it has to be surgically put back in after a little while. It wouldn’t be a very productive step, because it would most likely mean getting all my medications through the IV route. But I am simply hoping for a night that is painless enough to sleep through.

The bottom line is, there are many kinds of feeding tubes and they can be placed for many different reasons, in my case gastroparesis. They may cause pain, and definitely cause challenges, but they also save lives. I hope that one day, the technology will be improved for future patients’ experiences, but I certainly am grateful for the feeding tubes I have had this year. If you see someone out in the world with a feeding tube, they would probably want you to know this: you can’t jump to any conclusions regarding the nature of their tube, but it IS helping them, sustaining them, or saving them. And also, now that you know more about what it takes to live with a tube like that, maybe you will have even more respect for the fighter who is attached to it.

P.S. Shout out to all the parents and loved ones (especially mine) who help take care of all the feeding tubes and their fighters. I have super tubie parents. Oh and Tiko is pretty supportive too! If only he had a tubie dog shirt..

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Medical Update- including a diagnosis!

I have some news! Finally, I have been granted a corner piece to my puzzle, an answer that brought with it many more questions. I went in for a gastric emptying study, where I was instructed to eat a scrambled egg sandwich that had radioactive tracers in it- quite the delicacy! Continuous and intermittent X-rays were taken to mark the progress of my digestion. In a normal individual, after four hours, the stomach should be empty or at most have 10% remaining. My study showed that after those four hours, I still had 51% of the meal stuck in my stomach. This means there was finally a test that quantitatively showed how much my GI tract has been malfunctioning. Based on the results, I was diagnosed (YES, diagnosed!!!) with Grade 4 Gastroparesis. Gastroparesis means paralysis of the stomach. And in my case, grade 4 is the most severe which is considered stomach failure. What this means, is that when I eat something, it becomes trapped within my stomach and the muscles at the bottom are clamped down too tightly to allow much to get through to my intestines. This causes a build up of stomach contents each time I eat something else throughout the day, which explains the retching, nausea, and abdominal swelling.

There is no cure for Gastroparesis. However, there are various medications and treatments. My doctors have already tried the majority of the standard-course-of-treatment-drugs for this diagnosis over the past year. Unfortunately, none of them helped or worked out for me. My case is considered medically resistant due to all of the efforts and the fact that I am reliant on TPN and IV hydration. Since this diagnosis is specialized and the medical community does not have a ton of research on it yet, I decided to seek out someone who focused on GP (Gastroparesis) in their career. I found an amazing specialist at AGH, and their office got me an immediate appointment for 2 days after I called. He had some ideas, shed some insight, and prescribed a couple more medications to help with symptom management. I finally started to feel listened to and understood. Having a diagnosis made me feel so much less crazy. Even if it was one without a cure..

Just as things were falling into place, I started to have the worst exacerbation of symptoms to date. Because of the uncooperative muscles in my stomach, when it was empty, an incredibly strong pressure gradient began pulling on my feeding tube from inside my stomach. I have had some issues with that in the past, although it was always a quick popping motion of my tube in the past (see blog entry #1). When they swapped out my GJ tube for just a G tube, things improved. Right up until 2 weeks ago. This pressure gradient that has been yanking on my tube, will suck it further into my stomach and hold onto it for up to an hour at a time. As you can imagine, this is quite painful. In fact, it has put so much strain on my abdominal muscles that sitting up is nearly impossible. All that internal disruption and trauma has caused significant abdominal swelling that has not gone away (it looks like I swallowed an entire watermelon). I have never been in this level of pain for 12 days straight before, and I am desperate for relief. Luckily, I came up with an idea after listening to the options my new specialist laid out.

There is a somewhat experimental procedure involving injections of Botox into the pylorus muscle (located at the base of the stomach separating it from the intestines). The injections have to be done from the inside and their intention is to relax that muscle and allow food to pass through more freely. I also believe that having that muscle relaxed should minimize or eliminate the pressure gradient that has been wreacking havoc on my stomach. My GI doctor at Children’s, the one who discovered my diagnosis, has agreed to preform this procedure on me. After being stuck in bed wearing fat pants for 2 weeks, I am finally going in for surgery tomorrow (Wednesday)!! The effects of the Botox only last about 3 months and it may take a little time to know if it worked for me. If it is determined to have been effective in my case, the next step would be to schedule a pyloroplasty. That is an invasive and irreversible abdominal surgery that aims at producing the permanent version of the Botox injections. The pylorus muscle would be surgically cut to allow more movement of food through the intestines. I can’t tell you how much I hope this will work and provide me some much needed relief tomorrow.

I have a diagnosis, but I still have quite a road ahead of me. As you may recall, my illness has both a GI and a neuro component (causing the memory loss and right sided weakness). The neurological side of things has proven to be elusive and baffling. Although I am still undergoing work ups and testing for that, there is a strong chance that it was initially caused by a virus- perhaps from my traveling in Puerto Rico or from my tick bite (both of which happened shortly before my symptoms began at the end of 2015). My GI symptoms initiated about 2 months after the neuro ones started. This makes sense now because one of the known causes of Gastroparesis is viral. At this point though, with the number of things we still don’t know for sure, the cause of my GP is considered idiopathic.

This memo was longer than I intended it to be, but I have a large support group that all deserves to know as much as I know about what I’m going through. I truly appreciate the love and positivity I continue to receive from all you beautiful people. I need positive vibes, good intentions, and/or prayers now more than ever.

“These mountains that you are carrying, you were only supposed to climb” -Najwa Zebian.  I have proven to myself how strong I am, even when every part of me feels broken. And for the first time in months, I have actual hope for my future. I know I will be ready for whatever comes next. Namaste xox

2017: Ringing in a New Way of Life

I honestly can’t believe we are about to leave 2016 behind. From what I’ve heard after talking to a large cohort of people, and even simply looking at some of the recently-made online memes, I am sensing that this was not a good year for too many people. It’s a shame, because every year on New Year’s Eve, people gather excitedly at concerts and fancy parties to eagerly watch one year’s mistakes, challenges, and misfortunes fade into the next year’s blank slate of hope and opportunity. We all want to believe that next year will be better. Little do we realize, that is all up to us.

One thing I have come to realize, is that we all need to take more responsibility for our own lives. Each of us holds more power than we give ourselves credit for. We have the power to change a lot of what makes us so unhappy. There are very few things that truly make us stuck. Now, lest you forget, I am currently spouting this off as I am stuck with an illness that completely turned my life upside down. But I am fully prepared to reveal my not-so-private secret with you all. The secret to never truly being stuck in a place or a situation, is your mindset. When you feel that a significant amount of power has been taken away from you in your life, it is your reaction to those events that has the opportunity to give you that power back.

In my 2016, I was stuck with a terrible illness. However, what I did not have to be stuck with was the self-pity, anger, fear, or sadness that could have so easily been served up as side dishes with my entree of misfortune. We all need something that gives us a purpose. Fulfilling a purpose is a large component of happiness, in my opinion. Based on this simple algorithm, when something drastic changes or has been taken away from you (like losing your job or getting sick, etc.), you need to redefine your limits to see what it is that you CAN do. For example, I love helping people. At the beginning of the year I was fulfilling that purpose by working as a nurse. With the many debilitating symptoms I am currently dealing with, I can’t be a nurse now. However, along with my mindset secret I’m sharing, I’m here to tell you that your story should never end with a can’t statement, not even mine. In fact, that is a sure fire way to remain unhappy.

When I thought about my need for an ‘interim purpose’, I recognized that along with helping people, I also love to write. I had become friends with several other chronically ill individuals via Instagram, and a few of them had blogs. Those blogs helped me to feel less alone, so I started to realize the tremendous power they had to help people. Thus, my blogging idea was born. Unfortunately, due to my condition, I did not get started as soon as I wanted or write as many entries as I hoped, but I did it! And that my friends, is what I choose to focus on. In addition to this blog (thank you, readers, for giving me my interim purpose), I have also started writing some articles for advocacy sites for others with disabilities and a variety of illnesses. For the most part, those articles have consisted of sharing my own personal story. I have always been an open person because I believe that truly does have the power to make people feel that they are not alone. Sharing my story has also given me ample time for self-reflection throughout this important journey. By sharing my own story, there is also the possibility, and the hope, that someone out there has experienced something similar and actually has a diagnosis. With this thought process, I think we all have the chance to help each other.

I can’t in good conscience talk about how important it is to focus on your mindset to better a shitty situation without also telling you that even I couldn’t follow my own advice for the whole year. I had times when I let myself succumb to anger and occasionally sadness. But those were moments when I really struggled with seeing a way out of this. Every time I lost my hope and will to fight this year, I thought about my family and close friends. And I fought for them until I had the willpower back to fight for myself. When my flame started to flicker out, I stayed lit for the sole reason of not wanting my people to be caught in the dark. They are the reasons I even remembered I was a candle in the first place. With the right fuel behind your fight, or new year’s resolution, YOU can make anything happen. If we remember to take responsibility for ourselves, fulfill a purpose that speaks to us, react positively in negative situations,  believe in each other, help one another, and smile! then I think 2017 has a lot of potential.

Be safe ringing in the new year and may you all be happy, healthy, and loved in 2017. xox