I called my doctors office today to make a sick visit appointment, I’ve had super fun sinus issues for over a week now and finally called. This is a normal human activity; everyone gets sick and seeks out medical attention at some point right? Right! Well, this simple phone call was a real struggle for me, I literally broke out in a sweat and felt myself starting to panic a little bit. Soooo naturally, I hung up the phone popped some sudafed and promised myself I’d call tomorrow if I was still sick.

I’m sure every human has had phone call anxiety at one point or another, and I am more than sure there are plenty of people who avoid the doctor. I, however, have only recently become one of those people. And soo being the super fun introverted internal processor that I am, I decided to figure out why. So here we go…..

I have spent more time in doctors offices than the average human being, anyone who knows me knows that. It is not uncommon for people to see me and say “what happened now?”. A cousin of mine recently joked “would it be a family reunion if you weren’t on crutches or in a sling?”. I am medically complex, humor is how I deal with it most of the time, comments like these are my norm. They are also highly indicative of how rough the last 15 years of my life have been medically. In addition to my family, any doctor that I see will tell you that I am a “professional patient”. I know my medical history from start to finish and can easily articulate it and how it impacts my quality of life. I did all the reading I could, I walked into all doctors appointments with a goal, a list of questions, and a desired outcome. My demeanor with doctors and staff is calm, unflappable, and always humorous. I make jokes that make most people uncomfortable, but that medical staff can appreciate. My rapport with nurses is like that of someone hanging out with their old friends. I take the pokes and prods without complaint, and have had every test under the sun in order to get some answers. I was once a professional at going to the doctor and managing my conditions. But now, I am still struggling to complete the phone call for a very simple test my doctor ordered in February. I have rescheduled an appointment with my nutritionist three times because I simply cannot bring myself to have another conversation about food. I am huddled in the corner of medical limbo because I am terrified and just not ready to move.

Terrified of what you ask? The answer is my body. I am terrified of what may happen and anything else being wrong. I dedicated 10 years doing everything in my power to get answers, to get a firm diagnosis, to figure out a treatment plan. I was so desperate to feel “normal” again that I submitted to any test, lab, or surgical intervention that could possibly achieve that. When I finally sat in front of a doctor who offered a surgical solution that he believed would solve all of my issues, I was ecstatic. Again, if you know me, you know how this turned out…. 30 days of inpatient care, tube nutrition, two major surgeries, and a couple of calls far too close for comfort. It happens, medicine is practiced not perfected, my doctor did not do anything wrong but I still walked away from the experienced damaged.

My hospital experience was difficult. I was not allowed to eat or drink orally, so the days were LONG and structured only by my hourly ten laps around the floor with my IV pole. 30 days honestly felt like 3 years. I learned very quickly that I did not function like this very well. There is no place to go when you are hospitalized, you and your thoughts are trapped in a very small space. Thoughts you would normally push aside and distract yourself from can not be pushed aside in these circumstances. Leaving me to confront every thought I had, good, bad, scared, angry, numb; trapped in bed with a tube in your nose and multiple IVs, there is no where to go. You have to deal with them. And its hard. It is probably the hardest fucking thing I have ever done in my life. I sat there, same four walls, attached to tubes to stay alive, facing all of skeletons I could no longer keep in the closet. It took a long time, I am coming up on the third anniversary of my time at Roswell and am still unpacking the baggage I discovered myself carrying.

So whats the point? The point is, the biggest lesson I have taken away from my experience is that I no longer want answers. Rather, I want to find the balance between living a “normal” life and managing the stupidity of my body. I do not want to test anything unless it is absolutely necessary. I no longer want to know how my dysfunctional digestive system works, and if it is getting worse or getting better. I do not want to be cut open and altered anymore. I do not wish to be at the mercy of medicine being practiced. It is very difficult for me to give up this kind of control to medicine after how badly it went. I have all the answers I need; I have a name, I know its is incurable, and that is all I need at this time.

I am 33, half of my life was spent relentlessly hunting for answers….. I’m done now. Now, I want to make up for lost time. And because of that I struggle with making a doctors appointment, because then I have to talk about all of the above, usually to have them offer their sympathy and be offered something that will not make any difference in the world. Being medically complex is difficult, and as I am learning recently, traumatic. The girl who once calmly sat in front of any doctors and submitted to their testing without blinking is gone. Replaced by an anxiety ridden adult who is sweating and shaking her way through appointments hoping with all her might that nothing is wrong, nothing is prescribed, and no testing is requested.

I’ve identified the problem. Now, I set about trying to work through it and find the “healthy” balance I seek. Stay tuned…..

PS. For the people who comment on my bravery and stoicism…..thank you, just know this is whats going on behind closed doors. I am human, I am brave, but mostly because I have no other choice.

 

 

My body almost killed me a couple of times. I had a surgery that came with a 3-5 day hospital stay. But 3 weeks later I was still in a hospital, receiving excellent care, but being kept alive with IV fluids and tube feeds. And still….twice my body failed me. I became acutely aware that I had absolutely no control over the body in which I reside. None. I had to wait to see if my body would figure itself out and adjust to a new way of life. I had to sit, and wait. I. Was. helpless. And it was the most terrifying experience of my life. To be mentally aware of your circumstances, to have the same athletic, physical frame of mind you’ve always had, while trapped in a body that could not sustain itself independently. Everything I thought I knew or understood about myself, my body, and how I existed was called into question. How could I live my life when I knew every single decision I made had the potential to result in a horrible outcome. Anxiety isn’t a big enough word for the terror that came from within my own mind. I would sit in my hospital room running through all the normal events that may happen in my life and think of all the terrible outcomes that could result them. It wasn’t a rational thought process, I knew that, but I couldn’t stop it either. It became my therapy, I was determined to prepare for all future bad outcomes. Why? Because if I prepared for all outcomes I could convince myself I had some control in what happened. Again, I’m aware, not rational. But in those moments, it became how I survived.

When I finally got out of the hospital, I thought these fears would lessen. That I’d be able to go back to being the athletic, physical person I had always been. But my body had changed, I was weak, I fatigued quickly, daily living tasks were about all I had the energy for. Back on the hamster wheel I went. Why did I agree to this surgery? What have I done to myself? Is this my life now? I am someone who played softball and volleyball competitively for decades. I loved hiking and snowboarding. My job was physically demanding and I loved it. There was something wonderfully blissful about the exhaustion that came from a 12 hour shift making bread. But after surgery and hospitalization, I could barely walk a flight of stairs without needing a break. 6 months out I still struggled to lift a 50lb bag of flour, which I had previously hauled around like it was nothing. A year out I was still symptomatic and undiagnosed, exhausted, angry, terrified, depressed. In my darkest moments I grasped at anything that might allow me to take control back. And in that time, I genuinely believed there was no way to guarantee control of the body I was trapped in. Ending my life became incredibly appealing. I could not control my body or how it functioned. I could not control the pain or nausea, the fatigue, the headaches. I could not control the genes I was born with. I could not control how my illnesses manifested in the future. I could not control that lack of research or knowledge on my rareness. There is nothing about my physical body and how it existed in the world that could be controlled. Sure, you can try. You can eat properly, exercise, not smoke, do all the things you’re supposed to do, but the body does what it will regardless.

Learning that lesson while in the depths of recovery from a life altering experience is not recommended. I got trapped in a cycle of searching for control and concluding that suicide was the only control I could possibly have. I cannot find the words to describe how dark that place is. Trapped, alone, scared, and not willing to let anyone in because they could not possibly understand. While at the same time being ashamed of this thought process, not daring to speak it out loud because of the taboo associated with it.

I wish I could say that I had an epiphany one day and turned the corner toward the light. But that didn’t happen. It took me a year of hard work, intense therapy, and self care to even be ready to begin digging myself out of that hole. It was a year of really uncomfortable, painful self discovery and growth. But it put me in a place where I could meet this wonderful human, who looked at me one day and saw that I was not ok. Who did not take me at the “I’m fine” and fake smile I usually offered as the truth. Who climbed down into my hole and sat with me, waiting patiently for me to be ready to climb out. Never pushing, just gently offering love and support. When I was ready to begin the climb, they climbed next to me, slowly allowing me to determine the pace. Pausing when I got tired or frustrated, waiting for me to be ready again. It took over a year to get out of that hole. It took a lot of time and effort and discomfort. Standing up here, looking down to where I once was, I can honestly say it was worth it. It happened this way, because it needed to. I could not know this level of happiness without knowing that level of despair. I survived all of that, so that I could have all of this.

It is important to note that no one is at fault for not noticing how far into my own head I was. I still functioned very normally. I worked hard, I cracked jokes, I was present, I was able to put on a front for periods of time that allowed my true mental state to go unnoticed. It’s not a joke when people say things like don’t forget to check on your funny friend, or your strong friend. We are the people who function publicly and suffer silently. I have amazing people in my corner, I knew I had their love and support. But I could not communicate what was happening to them. The fault is not theirs, nor is it mine. Rather the fault lies in the shame that comes with admitting to ones mental health issues and/or suicidal ideation. I, am one of the lucky ones. I had someone look me in the face and tell me they knew I was not ok and that they were willing to stick around until I was. Being loved and supported at your worst, makes being loved and supported at your best all the more sweet.

My mental health journey is not over. I still see a therapist regularly, I am still chronically ill, I still have rare diseases, I still have raging anxiety, I still struggle with depression. None of that will ever change. What has changed is my understanding of what I can control. I can’t control my body, but I can control my frame of mind. I can control how I choose to fight and when I choose to fight. I can choose to live in the moment, to let life come to me as is comes, and to not stress about the unknown. Most importantly, I can choose to be happy. I can choose to build a life I love with the people I want in it. The body can endure almost anything, it’s the mind you have to worry about. Making those choices has been the most freeing experience of my 33 years of life. As hard as the last 2.5 years has been, as uncomfortable and painful as this growth was, I would not change who I am or the life I lead today for anything.

In closing, check on your funny and strong friends, especially if they are going through stuff. The jokes they tell about their experience are meant as a shield to block you from their actual thought process. The “I’m fines” and “it could always be worse” are the script they use to convince themselves to maintain their facade in public. The taboo surrounding Mental Health has to end. My name is Jenna, I am diagnosed with anxiety, depression, and ptsd. I have considered and planned suicide. I see a therapist. I have tried medication and chose to learn to live without it. I would not be sitting here typing this without the combination of a good therapist, me committing to do the work, and the unwavering support of certain people in my life. If reading my story helps just one person, then I have done what I came to do.

-Jenna

“I think, these symptoms are just what we will always be dealing with. Motility is the issue, Mitochondrial disease is the cause. We can’t fix either”. That was my doctors closing statement at my last appointment. They are words that I have been waiting for roughly 20 years to hear; a verbal confirmation of what I already knew to be the truth. And yet, in that moment I felt like I had been kicked square in the teeth.

My medical history is extensive. I like to say that I came out special, and my mom should have asked for refund right then and there. Lucky for me, she decided to hang on to the baby born with a large cyst over her eye and tear ducts that drained non stop until I had tubes placed at six months. Both are common, benign, issues; but in my case it was just the beginning. I was in and out of doctors offices and hospitals for testing throughout much of my childhood. I had a kidney issue no one could quite figure out. When I hit puberty, I grew in to horrible allergies. At 14 I was diagnosed with my first ulcer, as well as, “the youngest case” of Barret’s Esophagus my doctor had ever seen. At 21- Gastroparesis, Chronic Esophagitis, and Eosinophilic Esophagitis, 23-Poly Cystic Ovarian Syndrome, 24-overactive gallbladder with stones, 25-Chronic sinusitis/tonsillitis, 28- Sphincter of Oddi Dysfunction, 31- Superior Mesenteric Artery Syndrome, 32- Mitochondrial disease (specifically Glycogen Storage Disease 12), 33- Small Intestine Bacterial Overgrowth (SIBO). And those are just the big ticket items, my friends.

As you can see, I am no stranger to doctors, hospitals, and all the fun things that come along with them. I have had 13 major surgical procedures, 8 Endoscopes, 5 ERCP’s, countless cat scans, MRI’s, x-rays, and blood draws. All in an effort to diagnose and correct whatever might be “wrong” with me. And yet, here I am, 33 years old sitting in front of the doctor I first saw at the tender age of 14; having him finally admit there is no “fixing” me.

I’d be lying if I said that I handled this news “well”. I did not. I was shaking and sweating and flustered. I wanted to laugh and cry hysterically at the same time. I wanted him to be wrong. I wanted to go back and find the point that things could have been changed, to the point where I was still fixable. I wanted to scream, loudly, and at anyone who would listen to me. But most of all, I wanted to know, how does one proceed from here.

Well, I wasn’t sure, so I just let it be. I didn’t think about it, I didn’t want to talk about it, I didn’t want to try and find some positive silver lining to being told “feeling like crap is likely the best you’ll ever feel”. Then, it was Rare Disease Day and I found myself looking through pictures and posts that have related to me medical odyssey. I felt a strange obligation to post something, to make it profound, to find my new starting point and build upon it. Que one of my favorite quotes of all time “I, myself, am entirely made of flaws, stitched together with good intentions”- Augusten Burroughs. As I was sitting there, looking at the physical evidence of a quest to find a cure I had an epiphany. I am the living embodiment of this quote. My body is flawed, every mitochondrion in every cell of my body, is flawed. I have spent 2/3 of my life getting poked, prodded, tested, radiated, cut wide open and stitched back together with nothing but the best of intentions. And in that moment, I realized it was enough. My efforts were enough. My families and friends’ efforts were enough. And perhaps most importantly, my doctors efforts were more than enough.

I have been asked on countless occasions “So all of it was for nothing?”, “that surgery didn’t help?”, “what do you mean they don’t know what’s wrong?”, “what do you mean there is no cure?”. Well folks, when you are medically complex, it comes with the territory. I have had brilliant doctors tell me “you’re a conundrum, wrapped in a riddle”, break up with me because they can no longer help me, and tell me with such confidence that they will “fix me” only to have their confidence shattered. My most recent surgeon; a wonderful, wonderful man, openly admitted that he lost countless hours of sleep over my case. A case he was convinced would be “fixed” with one surgery, then all my problems would be solved. Boy, was he wrong, and boy was it hard to watch his confidence wane throughout the time under his care. Should I be mad about it? Maybe. Am I? Absolutely not!

And here’s why? He had nothing but the best of intentions in his efforts to improve my quality of life. He went above and beyond researching, discussing with colleagues, and reaching out to all sorts of other professionals to help me. He didn’t have to do that. He could have told me, at any point in treating me, that he could no longer help me. But instead, he set his ego aside and asked for help to get me the best doctors/care moving forward. And I can say this about every single doctor I have had the pleasure of encountering during my journey. So no, I am not mad. I have not done any of this “for nothing”. What I have lived through has made me the person that I am today. It influences how I view the world, and how I choose to live within it.  These doctors have played an active role in shaping the person that I am, and I have zero issue with it. They tried. They are human beings who tried their best to fix the unfixable. Their good intentions are more than enough for me.

I am a 33 year old woman, and the way that I feel today is likely the best I will ever feel. That’s a daunting thought, terrifying some days and overwhelming on other days. And that is ok. I didn’t think I would ever find the answer as to how to move forward from here, but I think I have it. Live with good intentions. Take the good days and do what you can, take the bad days and appreciate how great the good days are by comparison. Remember that every doctor you come across is a human being just trying their best to treat conditions they may not fully understand. Remind them that while they were trained to look for horses when they hear hoof beats, you are in fact the odd Zebra. I am going to wear these scars like a badge of honor, because they are evidence that I did everything in my power to get better. Life takes guts, ladies and gents, I may be down a few feet in that department, but I still have fight to give. And I intend to fight for each good day that I have. This is my life, and the only thing I have control over is the intention with which I live it.

 

I have a Mitochondrial Disease.

No, there is nothing wrong with my heart….that would be a condition including the word Myocardial. And honestly is the second most common response I hear when I tell people my diagnosis. Usually, however, peoples immediate response is  “what the heck is that?”. Well, I am about to tell you……

I’m sure we all remember learning that the Mitochondria is the powerhouse of the cell, responsible for creating roughly 90% of the bodies energy. Ya know, the energy we all need to maintain organ function and sustain life. When the mitochondria fail, less and less energy is made for the cell, resulting in cell injury and cell death. If this continues over a long period of time, the process repeating throughout the body, whole organ systems begin to fail. In my case, my digestive system is the organ system that has been impacted most by my condition. I spent roughly 18 years dealing with chronic gastrointestinal issues, issues that continually worsened and became more difficult to diagnose. Countless doctors were perplexed by my symptoms and my bodies lack of response to treatment. The result of so many years without the proper diagnosis, was me developing numerous serious stomach conditions, including, SMA Syndrome. Which honestly, was the diagnosis that led us on the right path of finally nailing down the proper diagnosis of Mito Disease. So yes, the surgeries and hospital stay were necessary, it needed to be corrected, and it led to me being put in front of all the right doctors. Moving on ha…….

Mitochondrial diseases are rare, poorly understood, and difficult to diagnose. The day I received my diagnosis I was determined to find all of the information I could…..that took me a grand total of 60 minutes. There is next to no information on how this condition impacts adults, what the long term outcomes may be for diet and medications, whether it will worsen with time, whether symptoms can be reversed. All of the questions I need answers to, and no one has them. It wasn’t until I was referred to my amazing Dietician/Nutritionist, that I was finally able to start understanding exactly what was happening in my body. She calmly and patiently explained to me that I have one of the rarest forms of glycogen storage deficiency. What does that mean? It means that the body takes glucose from food and turns it into glycogen to be stored and later used by muscles throughout the body. The body has proteins that are then responsible for taking the glycogen and turning it back into glucose to be used for energy. My body lacks those proteins. So I can store all kinds of energy for my muscles, but I cannot access it. Good news, drastic diet changes could help me combat this. So I jumped on board…..until this woman said I would have to give up all complex carbs, bread and pasta are LIFE!!!! I legit used to joke that if the day every came that they took bread and pasta away from me, “give me a feeding tube….I’m done chewing”. Well, as it turns out feeding tubes are wildly unpleasant, and I never want one ever again. Sooo, I agreed to give it a try. I agreed to basically become a caveman, protein/fruit/veg/water, to give up the things that I loved the most in life (in terms of food ha, yes I realize how dramatic I sound, but my love for carbs RUNS DEEP). I honestly went into expecting very little, but within a week I noticed a difference. My digestive system was much less angry, I threw up less, my nausea reduced somewhat, my pain still hangs on like a champ, but the first two were major wins. So I decided to go hard, fully commit to this new diet, set alarms for meals 6 times a day and meds 4 times a day. I carry around a pill combler that hold my 14 pills a day, I cook, I meal prep, I follow the plan to the letter. And three weeks into this full throttle commitment I notice a huge difference. My muscles cramp less, my gut is happier, I am happier, weight is just melting off of me. Symptom relief makes it so much easier for me to continue this lifestyle change.

Does this mean I am cured? 100000000% NO! What this means is that I have found a way to help my body make and maintain energy. It’s a lot of work, I’m not going to lie. And it is work I will be doing for the rest of my life. The meds and the diet are forever, I will forever be trying to help my body make energy to sustain my life. It’s daunting, it’s terrifying, it’s infuriating, it’s sad, it’s hard. I choose to deal with it quietly, I choose to not complain on my bad days and not draw attention to what I am doing all day every day just to maintain my “normal” life. I’m only writing because I field questions every single day, and that conversation is getting really old ha. Also, so people can start thinking before they speak or act around me. Yes, I have lost weight, but don’t call me a “skinny bitch” or tell me your jealous or i have it easy because I HAVE to eat clean. Saying any of those three things is rude, ignorant, and incredibly infuriating. I probably thing about food more than the biggest food addicts on the planet. I don’t choose any of this, but I choose to help my body in whatever ways I can. And for me that means serious commitment to following my diet plan, exercising as my body allows, and listening to my body when it tells me to rest. It comes off as selfish or self serving, and perhaps it is, but its what my body needs to keep me alive…..so you can get on board, or kindly go jump in the lake. Your choice…..now you all know……

 

 

 

For the past 14 months, I have been so focused on overcoming the “30 day odyssey” that I have lost myself. I have lost my joy, my ability to find humor in all things, my patience, my determination, and most importantly my hope. I love my job, but I struggle every day to get out of bed and go to it. I love my friends, but I struggle to get up and get dressed to see them. I love to read, but have not been able to finish a book in over a year. I love to laugh, but for the first hour or so I’m in any situation I find myself faking it until I make it. Some days I do make it, other days I force it until I am too exhausted to deal with it anymore. I struggle to talk about all of these things. I struggle to admit that I am struggling to come back to myself and don’t even know where to begin. I struggle with the fact that I have thought “death might be better than this existence.” on a regular basis. I struggle with this being my reality, but it is and I am going to talk about it, regardless of how taboo the topic is.

It occurred to me today, that all of these issues run much deeper than the events of the last fourteen months. When I was a baby/toddler, I had three different surgeries before the age 3. When I was a kid, it was constant kidney issues. When I was 12, I was diagnosed with the “worst adolescent case” of tmj my specialist had ever seen. When I hit puberty I grew in to brutal allergies. When I was 14, I was diagnosed with my first ulcer, chronic esophagitis, and GERD. When I was 18, I was diagnosed with PCOS (polycystic ovarian syndrome). When I was 21, gastroparesis. 24, gallbladder removal. 25, chronic sinisitis, nasal surgery and tonsillectomy. 27, major foot surgery. 28-29, sphincter of oddi dysfunction, 5 ERCPs (4 with stent placement), 4 Endoscopies. 31, Duodenojejunostomy, jejunaljejunostomy, g/j tube placement, muscle biopsy.

My medical history is lengthy and complicated. It has been compiled by several different doctors, all hopeful at they could help, and all eventually admitting that they did not know what was wrong with me and that they could no longer help me. I have been broken up with by more doctors than I have boyfriends. Seven different specialist have looked me dead in the eye and said “I don’t know, you are an enigma”. Yes, it’s a running joke in my family. But do you know what it does to a person to feel as awful as I feel every day, to be paraded in front of countless doctors and nurses, tested in all way imaginable, and have them tell you they can’t find any cause? To have them say “you shouldn’t still be feeling like this….” “Physiologically there’s nothing wrong with you….” “That medication should be working….” “You can’t really be in that much pain all the time….” “You can’t be vomiting that often….”. I’ll tell you what it did to me. It made me doubt myself, it made me wonder if it was in fact psychosomatic, or if this is just what normal adults feel like. It made me lose faith in medical professionals. It made me feel incredibly isolated and frustrated and angry and hopeless. It made me slowly retreat into myself, to talk less and less about my medical situation, to just grin and bear it until it was unbearable. And I have felt this way on a daily basis for the past 13 years.

Are you all a surprised? Or saying “damn, I had no idea?”. I’m sure you are. Because like most obstacles I’ve faced in my life, I put my head down and trudge right on through. I don’t talk about it, I don’t process it, I don’t draw attention to it. But that has to change. If I am going to find my way back to the things and people I love, I need to talk about the dark stuff that drew me away. I also need to start coming to terms with the fact that I am chronically ill, how much of a toll this chronic illness has had on my life to date, and how much it will continue to impact the rest of my life. I think, in the back of my head I truly believed that one day a doctor would give me a cure. That they would be able to fix whatever was wrong, and I’d go back to living a normal life. What normal life? I don’t know, because I’m not sure I’ve ever had one medically speaking. And if I did, I certainly do not remember it.

So how do I dig myself out of this hole? For me, it starts with writing this. With admitting openly that I am struggling mentally, emotionally, and physically. With letting you all have a little peak into what’s happening in my head, hoping you will take it in, and offer support/comfort/your help. With me asking for your continued patience as I find my way back. And with me owning my truths, regardless of how dark they are.

“there are moments that mark your life, moments when you realize nothing will ever be the same. And time is divided into two parts, before this and after this” -unknown

One year ago I had a surgery that became one of these dividing moments and began what has been the most difficult year of my life. I would like to say that I am writing this as a healthier (both physically and mentally) person, but this is not the case. The truth is that I spent a several hours Monday sitting in Roswell being told that they aren’t sure what is going on, that there are multiple possibilities but not one they can definitively diagnose. This appointment was the one in which I finally admitted to my doctor, my mother, and myself that I need help. That I wake up every single day and struggle with what I went through and how it has changed me. It is also the moment I decided to tell my story, in full, no details spared. So here we go…..

I have been living with chronic illnesses for about 12 years. Given this, I am no stranger to hospitals, needle pokes, surgery, and doctors who aren’t sure what’s going on with me. I do not consider myself to be an optimistic or hopeful patient as many of the things they have tried in the past have failed. But this time was different, with this doctor and this surgery I bought in and I bought in big. I truly believed that I would recover from this surgery and have my life back. Cue the roller coaster ride that has been the last 365 days of my life.

11-16-2016 I checked In to Roswell to have the surgery that would change my life. I woke up from surgery hopeful, my doctors were hopeful, my family and friends were hopeful. Three days in however I spent half of the night throwing up large quantities of bile and was delivered the first blow to my hopefulness. I was scared and disappointed, but clung to the thought that my doctors were right, my body just needed a few more days, I’d be home after the weekend. NOPE. Monday morning came and blow number two was delivered. Nothing was passing out of my stomach, the NG tube would have to stay in longer and I needed to start TPN (total parenteral nutrition) to provide my body with nutrition. A Picc line was placed in my left arm and I jumped on board, again believing that my doctors were right, that with time this would work itself out and I’d be on the way back to myself. I woke up every single day hopeful that that would be the day that my stomach would begin to empty. In the morning they would clamp my NG tube and I would will my body to figure itself out, mentally walk through my stomach emptying, I would try to use positive thinking to heal my body. By mid afternoon however, I was faced with the disappointment of needing to reattach the tube to suction to empty my stomach contents. It got to a point where everyone dreaded it, I couldn’t even look at the canister because I knew there was no improvement. The look on my nurses faces when they measured the output that came pouring out of me in under 5 minutes just added to my disappointment. I continued this daily roller coaster of hope and disappointment for 10 days, refusing to believe that it wouldn’t work. I woke up each day hopeful and went to bed each night dealing with crushing disappointment.

On day eleven, I begged my doctor to remove my NG tube; the sores in my nostril combined with a brutal ear infection made it incredibly painful, and he agreed. I was ecstatic, my nurses were ecstatic, my parents were ecstatic, for the first time in two weeks my face was tube and tape free. With this freedom came the wait to see if my stomach would empty. In the back of my head I was terrified, I was sitting there waiting for the other shoe to drop, but with each passing hour that little seed of hope grew. By hour 20 I thought well hey, maybe my body has finally figured itself out. Cue blow number three: horrible, violent, vommitting of all the contents that had built up in my stomach during those 20 hours. Followed by vommitting roughly every 8 hours after that culminating in the decision to have a G/J tube surgically inserted into my abdomen. The gastric port would be used to drain my stomach contents and the Jejunal port would be used to begin tube feelings. This plan was developed so that I could provide my body the time it needed to figure itself out from the comfort of my own home. It wasn’t what I planned for, but I was happy to finally have an exit from the hospital in my future.

The surgery went well, it hurt, but I started tube feeds the following day and was sprung from the hospital two days after that…18 days after I checked in. The first place I went was to see my boys, who wanted absolutely nothing to do with me. I couldn’t even bribe Atticus to come near me with Cheetos, and the cat loves nothing more than finger cheese. Because my care needs were still so extensive It was decided that I would stay with my mother. The first 24 hours were uneventful, I was uncomfortable and exhausted, but figured it would pass with time. It didn’t. My discomfort steadily increased over the next 12 hours while my energy steadily decreased. I lost my voice, I lost my hearing, all I could hear while I spent 12 hours dry heaving was the sound of my own racing heart. My mother Understandably terrified called and woke my brother at 4 am asking him what to do. Cue crushing disappointment number four: I was to go back to Roswell for a direct admission. I looked in the mirror before leaving my moms house and was terrified myself for the first time. I didn’t even recognize the person staring back at me, she was gaunt, had huge black eyes, and looked like someone who was dying. Which technically I was. I was so dehydrated my kidneys and liver function took a dive, the nurse blew out three veins before finding one she could use, and I couldn’t move without getting winded. I was terrified, but in too much pain and far to exhausted to care about the outcome. I remember thinking, well Jen, if this is how you go, so be it. Some fluids made all the difference. And my doctors were again hopeful, 24 hours of fluids and tweaks to my tube feeds and fluids and I was on my way back home.

I thought it would be easier this time around, we had a better plan of action, we had more information, we had new hope. The first 36 hours were uneventful, I was tired and uncomfortable, but felt OK. And then, the dry heaving started. I was up all night my abdomen painfully convulsing with each heave, my hearing slowly diminishing again along with my energy. Another phone call to my doctor, this time with him scheduling me to be seen that morning, me showing up hopeful I’d be leaving with advice. NOPE. Cue devastating blow number 5, I was severely dehydrated again, and it was time to discuss a second major surgery. My body couldn’t figure out the new connection, more than  three weeks in nothing was draining out of my stomach and they weren’t sure it ever would. So, I was admitted and scheduled to have surgery the following afternoon.

I spent those 24 hours talking myself in to going through with this surgery, convincing myself that it would work and the results would be different this time. I actually almost refused to have it done. I was laying in the pre-op area when I was overcome with dread and fear. I wanted them to understand my terror, I wanted them to guarantee me that this would work, even though rational me knew that they couldn’t. I wanted nothing more than to tell them no, I wasn’t having more surgery. But, I didn’t, I had the surgery, and I woke up feeling great. My pain was controlled by interthecal morphine, my nausea was well controlled also, and I was in a good mood. Minus some serious itching, I was insanely hopeful that things were on the upswing. But, let’s be real, it’s me. A few hours later my nurse came in to give me Benadryl for the itching and couldn’t get my blood pressure to register on the machine so she took it manually, it was 80/50. I run low, my pressure is generally 90/60 so this low reading wasn’t a huge cause for concern, they decided to check it more frequently, limit my activity, and see what happens. What happened was that it steadily dropped over the next several hours before hitting an all time low of 64/28. This resulted in a rapid response being called, four attempts at a catheter placement and me being transferred down to the intermediate ICU where I spent the next 24 hours wired for sound and having countless medications pumped into my body. But the perk was, I could finally start a clear liquid diet. For me, that balanced out the awful of the catheter and the blood pressure cuff going off every 15 minutes. That night, after 27 very long days, I was finally able to drink, and it was the single greatest moment I had experienced in a long time. With that first sip the hope began to grow again, and it steadily grew as I was able to eat for the first time, and then enjoy a meal with my mother for the first time in a month. Three days later, I was released from Roswell, able to eat and drink on my own, and not needing the use my GJ-tube for anything other than intermittent draining.

I am fairly confident that my doctor was more excited than I was, a feeling that was confirmed by his PA who told me “I have never seen him this happy in the three years I have worked for him. He lost a lot of sleep trying to figure you out.”. And so with an ecstatic doctor, hugs from all of the nursing staff, and well wishes from other patients, I walked my way out of Roswell. Yes, I walked, it was an important step for me (both literally and figuratively). I was on the mend. I was going home to recover and regain the life I had slowly lost over the last 11 years.

I maintained that attitude for the first few weeks, as the pain decreased and I slowly advanced my diet. I felt good. And then, one day the nausea came back. I brushed it off as something I ate, until the following night when I threw up my entire dinner. My doctor thought it was a fluke, told me to keep a food journal and give my body time. So I did, and over the next few months I followed a similar pattern. I threw up less, but the pain and nausea returned on a daily basis. I was devastated. My doctor was too. He referred me to a specialist to have a muscle biopsy done, thinking perhaps my issues run much deeper than my digestive system. The results should be in within the next month.

In closing, I sit here 365 days after this journey began and still feel the unbearable devastation. A feeling complicated by my anger, confusion, sadness, and crippling anxiety. I cannot stand the smell of saline, I jerked my arm away so violently the last time I had an IV flushed with it that I ripped it right out. I do not sleep, I wake up every couple of hours, on the same schedule they used to check my vitals . I hate food, I eat because I have to, not because I want to or enjoy it. I am terrified daily, terrified that some simple choice is going to result in my life being forever altered again. I get violently angry when I hear people talking about deprivation diets or complaining about simple every day problems (I know it’s not fair, but its the truth). My blood pressure spikes when I walk into any doctors office or hospital. I can’t look in the mirror at my scars without reliving all of it. But my biggest struggle is where to direct all of these feelings. It’s not my doctors fault, he did his very best and honestly probably feels equal devastation that it didn’t work. It’s not my fault, it’s not my families fault. It’s my bodies fault, the body I was born with, the body I am powerless to change. So those feelings sit, and fester, and build, and eat away at me as I try to move forward with my life. This blog is step one at releasing them. It only took my 365 days to finally allow myself to start.