Day 1: Love, Laughter, and a Little Loopy

Hey everyone!

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Paddy here. I promised mommy I’d be giving you all updates throughout the week to ensure that everyone is kept abreast of how she is doing. I’m here to tell you that from start to finish, Francie was surrounded by friends, family, and an attentive hospital staff all making sure that she attacks this week with her best foot forward.

Francie arrived at Hahnemann/Drexel University Hospital in Philadelphia this morning accompanied by her daddy and Mark. Grammy (Mrs. Fitzgerald) and I were not far behind. Most of the morning consisted of Francie getting lab work done and waiting for the results to come back before officially starting the IV Ketamine later in the afternoon. Celebrating their anniversary today, Francie encouraged her parents to enjoy their evening while Teddy and Gabby brought with them to the hospital some homework and hair-braiding skills to enjoy in good company.

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As the evening went on, Francie was administered Ketamine in progressive doses until reaching her stable 40 mg / hour. Throughout this time, she was in her trademark positive spirits and with jokes and smiles to fill up the room with Teddy, Gabby, and Mark.

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(Marky thought he looked smart in Francie’s Neuroscience shirt)…

As the long day came to a close, Francie’s eyes started to shut as she will likely remain in a twilight state for the remainder of the week. Periods of sleep and cloudiness are juxtaposed with moments of greater clarity and cognitive functioning, but she is resting peacefully tonight and with a day of love and laughter under her belt during this treatment.

So, was it all good? Well, not quite. In fact, I seemed to draw the short stick when the Intensive Care Unit’s administrative staff wouldn’t let me in…crazy right?

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Hospital policies these days…I’m too cute I guess? So while I played witness to Francie’s smiles and courageous attitude for part of today, I will need to delegate the updates to Mark for the remainder of the week. Please keep my mommy in your thoughts and prayers, as well as all those who suffer from chronic illness.

Lastly, we have raised $4,400 of the total goal of $10,000 for our ALS research fundraiser, “High-Five for Heiman-Patterson!” Please consider showing your support for this tremendous cause by learning more using this link:  https://www.razoo.com/us/story/Ext4hg. As Francie’s sister Maggie says, “there is no donation too large or too small.”

Thank you for your continued support through the thoughts, prayers, hopefulness, and joy that you spread.

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Licks of love,

Paddy

Living in limbo

If you Google “limbo,” the synonyms provided include: in abeyance, unattended to, unfinished; suspended, deferred, postponed, put off, pending, on ice, in cold storage; unresolved, undetermined, up in the air, uncertain; (informal) on the back burner, on hold, treading water, in the balance—every one of which I could have used to describe my health situation since the last time I published a blog post, six months ago.

Many times through the course of my treatment with Dr. Richard Horowitz I was tempted to share my status, but the instances that called me to write were moments of despair or frustration. With the intent of not rashly blurting out my feelings, I remained resolved to refrain from putting forth such negative sentiments until I was “out of the rough.” This restraint was particularly important, as I was told time and time again that I was just “Herxing” (a Jarisch-Herxheimer Reaction is a reaction to endotoxin-like products released by the death of harmful microorganisms within the body during antibiotic treatment). So, I put my head in the sand and waited out the storm in silence. I continued going about my everyday business as best I could, as we all held our breath waiting for the symptoms to subside and the fog to clear. I not only didn’t want to give premature judgments about the protocols without having given them sufficient time to work, but I also recognized how unhelpful it would have been to spew off more bad news, when I knew how much negativity already bombards our newsfeed. Ultimately, however, after six months of rotating through intensive multi-antibiotic regimens, the fog didn’t clear, and I decided to cease treatment for chronic Lyme disease. The ever compiling and compounding side effects became impossible to justify in the face of no perceivable improvement.

Due to compromised gastrointestinal absorption and drug sensitivities, which precluded usage of the most promising protocols, I was forced to receive the antibiotics intravenously. This type of daily administration required a PICC line, which became infected due to an adhesive allergy that led to uncontrollable dermatitis. With mounting scar tissue formation in my antecubital veins of my “elbow crease” (the “go-to” for blood draws) we made a difficult decision to have a central port placed beneath the skin of my right chest wall in order to allow for easier access. On the day of the procedure to implant the device, it took five nurses and eight needle sticks to get venous access in order to be able to administer the anesthesia. I took that as a thumbs up from a higher power—satisfying confirmation that I was making the right call to go through with the surgery.

I acknowledge that the ideal notion of a “normal” college experience is a farce and I should be thankful to be able to attend school at all, but I was admittedly desperate for a senior year that more closely resembled the lifestyles of my friends and classmates. As such, I spent the second half of the summer getting 2-4 hour infusions 3 days a week in the hopes that the supportive modalities would grant me a more stable state of health that could sustain high functioning in the fall semester. Despite our best efforts, that is not what I got. Instead, I was graced with a period of more pain than ever. Hence, my reason for citing limbo.

Limbo is defined as an uncertain period of awaiting a decision or resolution; an intermediate state or condition; a state of neglect or oblivion. I’ve been living in limbo. It is akin to the state of our country right now, as we feel as if we can do nothing but laugh, mourn, gawk, and throw up our hands at the presidential election. How did we get here? Why did this happen? Where did we go wrong? What the heck do we do now?

I ask myself those questions every day. All the while, I do my best to fill up the space with:

smiles, Paddy helps with that,

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laughter, Maggie helps with that,

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light-heartedness, Teddy helps with that,

 

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love, Mommy helps with that, and

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strength, Daddy helps with that.

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The lyrics ring true: “I get by with a little help from my friends.”

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However, despite all this incredible support, the lack of resolution to my illness is nothing short of gut-wrenching. Deciding what to do next is only slightly less daunting than the prospect of living with the pain forever. I have been haunted by chronic pain for nearly six years at this point and we have finally decided, after pursuing countless, more conservative efforts, to try a relatively novel and less-well understood approach to treating chronic pain. Starting on the Monday of fall break, October 17th, I will be admitted to Hahnemann/Drexel University hospital, where I will be sedated for five days using IV Ketamine.

The proposed, general mechanism for how this treatment works is to give the nervous system, specifically the NMDA receptors, a chance to “reset”. We are hopeful that I will awake from the sedation free of pain and far less symptomatic. The effects of IV Ketamine protocols have been documented to last upwards of 6 months. The possibility of living pain-free for 6 months feels like a dream after 6 years of intractable pain. I would be grateful for the reprieve on behalf of my parents and siblings who most often receive the call of nothing but sobs on the other end of the phone when my nerves are on fire. I would welcome wholeheartedly the chance to be carefree. I would beam in bliss and thankfulness if I could spend a night dancing in a dress that didn’t drape to the floor, with the faith that my knees wouldn’t swell and turn tomato red. It would be a tremendous luxury to have conversations with people and be able to listen to what they are saying without having the aching of my bones drowning out the sound of their voice. I am clinging to hope and trying to rest in the faith of this glorious outcome.

In appreciation for the doctor who is orchestrating this hopeful endeavor, I have created an online fundraiser that will span over my five days of treatment. My neurologist, Dr. Heiman-Patterson, has gone above and beyond for me, as she does for all of her patients. By nature, she is a phenomenal physician, caring first and foremost for the wellbeing of the sick people who come to her for answers and relief. I would like to play a small part in helping her help and her patients the way she does and advancing the efforts she dreams of achieving, specifically in her ALS Clinic. “High-five for Heiman-Patterson” is my small token of thanks to her. Please spread the word and join me in raising as much as possible for the ALS Hope Clinic during the five days I am sedated by following this link: https://razo.io/Zu9EBA.

Thank you in advance for your thoughts, prayers, support, and donations!

…my Hail Mary pass…

After years and years of searching for explication to my poor health, this past fall, following an extended stay in the hospital I decided enough was enough and called it quits. I didn’t do the curl up in a ball and cry version of quitting on life; it was more akin to a quintessential teenage relationship approach of “taking a break”. Except, minus the “it’s not you, it’s me” speech because I knew it wasn’t me; it was them—the 90+ doctors who had seemingly failed me, to be precise! It quite simply wasn’t working out…with any of them.

 

My solution was to take a hiatus, during which I did not visit a hospital (nearly) all semester. I focused on me-time more than ever, taking care of myself every way I knew how. Barely ever overdoing it, keeping myself busy with schoolwork, and basking in cuddle sessions with Paddy. My symptoms persisted, but I did my best not to stoke the flame so that the fire could remain isolated to the back burner. I even had a great couple of weeks leading up to my arrival back home at the end of my most successful round of college exams yet. I was relishing the semblance of normalcy and perhaps let out a sigh of relief, when I should have been holding my breathe for the next ball to drop…

 

And it did, far harder than anyone ever could have expected. It wasn’t a ball that dropped—it was a BOMB! Right around Christmas I started waking up with horrific migraines that would linger all day and started to wake me up increasingly throughout the night. The first sign that things were about to blow up in my face, though, wasn’t until the morning of my family’s flight to Arizona to watch Notre Dame play in the Fiesta Bowl. It was a wonder I made it onto the plane as I was combatting the “turbulence” of pre-syncope episodes and gastrointestinal chaos before we even boarded. Nevertheless, I made the most of my time in the South West and enjoyed seeing such a spectacular part of the country.

 

Paddy and I made our way back to Notre Dame for the start of the spring semester. Over the course of a week and a half my pain levels shot off the charts and my fatigue became more debilitating than ever. Showing dermatological and gastrointestinal signs consistent with an autoimmune flare-up, my doctor convinced me to subscribe to a three-day steroid trial. My response was severe and perhaps the most unnerving thing I’ve ever encountered. The medication-induced-psychosis left me petrified and helpless, necessitating my mom make an emergency trip to South Bend.

 

A battery of blood-tests helped us determine an acute, active infection that was causing encephalitis, or inflammation of my brain. I was switched over to high doses of antibiotics and within a few days I had my wits’ about me again. Anyone who has ever lost them can appreciate how valuable they are! Once things settled down my mom, painstakingly, left me to return home. The migraines and nerve pain were demanding so much attention that my doctors and parents both confronted me about the possibility of pulling the plug on the semester. However, I couldn’t oblige their caring counsel because I knew my friends here were the main thing holding me together and school was the only thing forcing me to continue putting one foot in front of the other.

 

The physical torment had me strapped to an emotional rollercoaster far worse than anything offered at any amusement park (not to mention, it was anything but amusing!). Last Thursday, the pain was tolerable, which made Friday, when it came back with a vengeance, tip me over the edge. I came home from my first class of the day and had a really ugly cry. I found myself on the ground sobbing with the gnawing thought that I couldn’t find hope anywhere within me. I was faced with the reality that I was waking up and going through the motions every single day for everyone around me because I felt unworthy of giving up on myself when no one else had given up on me yet. Yet, in the process, I had lost any will to live for myself. In sheer desperation I literally begged God to increase my faith in Him because I knew that when I felt it least, I needed it most. I petitioned for enough courage, patience, and strength to make it until spring break, during which I was scheduled to meet with a new team of doctors. This thought made me cry even harder though because of how unbearably daunting it sounded to hold out until the beginning of March, despite the fact it was only a month away.

 

Just minutes later I received a call from my dad saying the internationally respected and, arguably, most revered doctor of Functional Medicine—whose research and publications I have followed religiously for years—agreed to give me the only available new-patient appointment he had left in 2016 the following Wednesday at his brand-new department at the Cleveland Clinic, just a four hour drive from South Bend, IN. All I could do was drop to my knees to pray with the fullest and deepest gratitude for that sign straight from above.

 

 

I arrived in Cleveland on Tuesday night before my appointment riddled and drained. My heart was instantaneously filled with joy upon the warm embrace of my best friend, Kyushik, who drove up from Kenyon College to join us for dinner and to spend the night with my dad and me. I slept peacefully and deeply for the first time in weeks, comforted by the security of being reunited with two of the most important men in my life. That consolation was compounded when my usual nightmares were replaced with beautiful dreams about my Pop-Pop who sadly passed, at the age of 81, last month. He will forever epitomize strength in the face of ceaseless and overwhelming suffering in my fond memories of him. I walked into the hospital the next morning sure of the fact he was with me.

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Admittedly, I hadn’t pursued seeing this very public figure of a doctor earlier because I had preconceived, albeit unfounded, notions of what type of ego he must have after publishing multiple New York Times best-sellers and garnering such fame and success. While I will be the first to argue how wrong this assumption was to make ahead of time about any person, I have had my fair share of run-ins with HUGE EGOS in white coats. My long-standing predetermination that a doctor who had a waitlist 1,500 sick, sick people long wouldn’t have the time of day or care in the world for me could not have been more emphatically overturned! Dr. Mark Hyman is one of the most incredible humans I’ve encountered and the trait which puts him heads over heels above so many in the profession is his profound humility. He had no idea what he was walking into this morning because of a mishap with my electronic medical records getting lost. By the mysterious workings of the Holy Spirit though, the patient after me cancelled their appointment and we were gifted with three hours of this brilliant man’s undivided attention. Sitting in front of us and all the while asking questions and giving small insights he reviewed my history and sifted through 700+ pages of labs. He was transiently fraught over the complexity of my case and was frank about how rare it was, even for him, to see someone whose picture of health was as multifarious as mine. The challenge didn’t seem to discourage him too dramatically, though, because if anything it resonated with him and reminded him of his convoluted and lengthy road to health after dealing with a chronic and confounding constellation of symptoms as a result of multiple causes.

 

Dr. Mark Hyman is THE GREAT COMMUNICATOR of modern medicine and for that reason he has been able to touch the lives of so many people. He is patient and thoughtful and compassionate. I can now say, from first hand experience, he isn’t successful because he is in the business of selling anything, he is solely concerned with helping this patients heal so each individual he treats can get back on their own road to individual and collective success. I was in awe of his eagerness to collaborate with my other doctors; something that is very hard to come by in a world of highly specialized and strictly segregated medicine. When he mentioned calling up two of my other physicians to tag team this, my dad and I looked at each other with our jaws to the floor. He noticed how dumbfounded we were by his comment and promptly asserted with a rare confidence, “I know better than anyone, it takes a village.”

 

I must confess that thanks to Dr. Hyman my love affair with medicine has been reinvigorated and back in full force. I feel heads over heels for this physician who didn’t promise me anything except that he would never give up on me. Who knows, perhaps I finally found my knight in shining armor…

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I will forever be grateful to Dr. Hyman for his determination and willingness to catch my Hail Mary pass, for, if nothing else, he restored my hope and ignited by spirit to get back in the game.

 

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A special thanks to Aunt Marissa for spoiling my boy rotten while I made the trip to the Cleveland Clinic!

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Happy Love Day!

“I maintain a healthy, balanced schedule. I stay engaged in my academics. I keep in contact with a close, supportive network of friends. I exercise every day. I don’t drink alcohol. I practice near perfect sleep hygiene. I down all the pills the doctors’ prescribe. I have endured countless medical tests and procedures. I don’t eat anything they tell me to avoid. I take a lightened course load. I work on stress reduction techniques and coping mechanisms. I meditate and practice deep breathing. I try to get out in the sunlight and enjoy nature. I am open—probably honest to a fault—with my family. I orient my attention towards gratitude. I pray throughout the day and go to mass at least once a week……and look where all this effort and mindfulness has gotten me! I am plagued by intractable pain that none of the 90 some-odd doctors I’ve seen can explain or treat. Mom, I’m so sorry to say this, but I just don’t have any faith today.”

 

Somehow, someway the one person who has suffered with me and never strayed through every single day of my illness, in that moment of despair, through tears, gave me something more. After all she has given me, all of herself, her energy, her time, her livelihood, she managed to grant me yet another gift I will forever treasure. She said: “Francie, I know how much I love you so how could I not have faith in love?” 

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A mother’s love is like nothing else in the world…

 

At the onset of my illness my physical state was dismal but my laboratory results were consistently equivocal and provided very weak scientific evidence for what, if anything, was wrong with me. Understandably, exacerbated by his inadequacy to help me recover from EBV my family doctor began to assume that my symptoms must be psychosomatic. If nothing in my blood was indicative of the complaints I was presenting, the only logical explanation he could come up with was that I had to be subconsciously inciting the wide array symptoms and harping on seemingly general malaise rooted in depression. He brought this possibility forward to my mom and when she didn’t fall for it he turned to my dad to see if he could get a bite out of him. When the suggestion of this being “all in my head” was first mentioned I was in such physical disarray that I might have believed the doctor. As a 16 year old who was petrified by the sensations of a body that had declared mutiny on itself I certainly couldn’t have stood up and said anything with any credible conviction. That doctors ultimate hope was to force me out of his exam room and straight into a psychiatrists office. If it weren’t for my mom that likely would have happened and could have lead to long-lasting psychological damage and inedible self-doubt that might have haunted me for life. It would have greatly delayed the medical attention that was necessary to get me off of bed-rest and closer to normalcy. My mom will tell you to this day, it was simple for her to know how to handle the situation. She heard that voice in her head, which said: “I know Francie. I know my daughter and I know she is not making this up. I know something is wrong”. It was quite naturally her mother’s instinct that inspired her to take me out of that family practice, to never look back. A little more than two months later my diagnosis of Postural Orthostatic Tachycardia Syndrome was made my one of the most respected diagnosticians at John Hopkins University Hospital. We were referred to my beloved pediatric cardiologist at CHOP and I was back in school, albeit part-time, the next semester. I wasn’t where we hoped I would be, and I still am not, but I was in a much better place than I would be had I not had the medical care my mother insisted I deserved by virtue of being an ailing human. By being my voice when I needed an advocate most my mom reiterated the never-ending love she has shown me since April 2, 1994. For all of my life she has remained my most loyal friend, comforting ally, and selfless guardian.

 

Six years ago, I literally could not stand up for myself, so my mom did it for me; and has continued to do so every day since. When I cried, she cried with me. When I hurt, she hurt with me. I was never left alone at any point because she was always strong enough to stay with me. Dog-enthusiasts like ourselves use the quote, “I want to be the person my dog thinks I am.” However, I know in my heart that if there’s anything I want to be it is the person my mom thinks I am—and if I am wise and courageous enough to live the way she does than ideally that grown woman version of myself will look a lot like her. 

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A mother’s love is like nothing else in the world…

 

I adore St. Valentine’s Day not because of how it is celebrated, but because of what it stands for…and it is because of my mom that I am able to recognize and appreciate the value of that little four-lettered word. Through her selfless devotion to my dad, sister, brother, and me she has taught me the three most important lessons I will learn in this lifetime: 

1.     how to be loved, 

2.     how to love, and

3.     how to never lose faith in love.

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One Call Away

Returning to Notre Dame as a student this fall took a lot of planning, effort, and faith. I’m not going to call it miraculous- I’ll save that kind of talk for when I’m feeling well again. I will, however, say, it required mountains to be moved. I wanted nothing more than to be reunited with my friends and reenrolled in an enriching academic setting. Yes, I’m a nerd! I love to learn, I get a thrill from writing term papers, and I thoroughly enjoy test taking. Getting to this place where it is possible for me to attend classes and live away from home, was only made possible by the works of Wonder woman and Superman, informally referred to as mom and dad. From day one of my life they have done everything in their power to make my dreams come true; from day one of my illness, they have done everything in their power to help me lead a life for which I never stop dreaming.

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It is nerve-wracking for my parents to have a sick daughter 700 miles away. They’ve lost countless nights’ sleep from receiving hysterical phone calls from me; or less dramatic, but no less terrifying, phone calls from my Rector informing them that I was taken to the ER in South Bend, Indiana. Despite the fact their anxiety could be exponentially lessened by my willingness to remain home, or transfer to a local school, they have never tried to push me into abandoning my goal of graduating from ND.

Paddy and I arrived in Indiana about three weeks ago. My Grammy and Grandaddy and cousin, Lily, were here with me the first week, my mom stayed through the next week, and then my dad spent this past week with me. Early this morning my dad returned to Philadelphia, and Paddy and I woke up to an empty house. I’ve known this day would inevitably come, but that doesn’t make loosing my “security blanket” of family nearby any easier.

One of the lovely families I’ve befriended at ND, and in the South Bend community, heard of my dad’s departure and arrived at my doorstep with a beautiful bouquet of fresh flowers from the Farmers Market. Mrs. Guibert said she hoped the “happy” sunflowers would brighten the house. I am blessed and comforted by the knowledge that I have my ND family to lean on and turn to in times of need.

The sunflowers Mama Guibert brought me immediately reminded me of an old friend, now an angel, Alex Bilotti.
The sunflowers Mama Guibert brought me immediately reminded me of an old friend, now an angel, Alex Bilotti. Alex is an inspiration to all who knew her. 
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The Golden Dome of Notre Dame by Teddy Fitzgerald, grade 7

A close friend and loving supporter, Stephen, recently introduced me to a song by his brother, called One Call Away. While the song was presumably not written for this purpose, I think it serves as the perfect anthem for parents to send their kids off to college. It is a touching reminder to independence-craving twenty-somethings that they should venture out on their own path in confidence that the people who love them unconditionally will always be just one call away. In my case, it is equally reassuring to know my team of doctors, who are consistently frustrated by my desire to receive my schooling so far away (“There are so many great schools on the East Coast,” they plea), are nonetheless willing to stand by my decision and similarly remain one call away (even if that call comes from the South Bend ER in the middle of the night… sorry Dr. Goldberg!). Despite my slightly broken, very fragile wings, I don’t give up in my attempts to fly because I trust I have a nest of family and friends to catch me when I fall. Wonder woman and Superman, thank you for that.

Come along with me and don’t be scared
I just wanna set you free
C’mon, c’mon, c’mon
You and me can make it anywhere
For now, we can stay here for a while
Cause you know, I just wanna see you smile

No matter where you go
You know you’re not alone

I’m only one call away
I’ll be there to save the day
Superman got nothing on me
I’m only one call away

And when you’re weak I’ll be strong
I’m gonna keep holding on
Now don’t you worry, it won’t be long
Darling, and when you feel like hope is gone
Just run into my arms

Thankful for all my “BFF”s

The year before I became acutely ill, in addition to playing for an ultra-competitive club field hockey team, I was a multi-sport athlete for my high school. To categorize myself as “active” would be a profound understatement. The girls on my indoor field hockey team would tease me at tournaments, because I ran or skipped everywhere! Oh, you forgot something at the court? No worries! Francie is already leaping across the arena to grab it for you…

Landing on my back, sequestered to bed after my initial EBV infection was a harder hit than I ever took in any field hockey game. While that time was necessary for my immune system to have a fighting chance at defeating the invader, the deconditioning of my body that occurred as a result made the return to a decent level of functioning exponentially more difficult to achieve. To this day one of the steepest, uphill battles I’ve endured was the intense physical therapy program prescribed by a team of doctors at CHOP. It was also one of the most rewarding endeavors to date. In the beginning of the process, simple aquatic therapy sessions would push me over the edge. I vividly remember sitting in the car after PT, balling my eyes out from the pain of nerve desensitization.

For years my most intrusive symptom has been chronic pain. When asked to describe the feeling on medical intake forms, I usually have to check all of the boxes or respond with “all of the above”. It burns, it aches, it stabs, it throbs. It is my joints, my muscles, my nerves; it is so deep that it feels as if even my bones feel pain. It is not always raging, but it never goes away. When it is mild I can easily forget it, but when it flares it acts like a monster-with-a-vengeance, insisting on making its presence known and appreciated.

While I am in as good, if not better shape, than I was pre-EBV, the sensitivity to touch I cried about during my first PT sessions, still haunts me everyday. It’s a condition called allodynia, the triggering of a pain response from stimuli, which do not normally provoke pain, or hyperalgesia, an increased sensitivity to pain, which may be caused by damage to nociceptors or peripheral nerves. The best example I can offer of this is something my mom recognizes in the times she will lean in to hug me gently and I will instinctively cringe and back away. Even the soft touch of a mother’s love is too traumatic for my poor body, constantly riddled in pain.

The hopes of intensive and prolonged PT were to gradually diminish the pain levels. Unfortunately, the pain has stuck around, but thankfully so has my passion for exercise. I am unbelievably grateful to have the ability to workout in the way I can. It can be frustrating when the doctors “bench” me from running, due to excessive joint swelling, but having the chance to sweat everyday is something for which I am wholeheartedly pleased. There is nothing more gratifying than completing a workout that you never imagined yourself being able to do.

My quasi-insane devotion to exercise is spurred by two things: 1. gratitude for my body’s abilities and 2. fear for the seemingly imminent physical decline if I stop. I commonly use the catchphrase, “If I don’t use it, I’ll loose it”. This may or may not be true, and the speed at which I could decline is unpredictable, but that’s not a risk I am willing to take. I firmly believe by staying active I have seriously slowed down the progress of my disease.

When I arrived home from treatment in Switzerland this past February I was having a lot of trouble running due to hypermobility. I couldn’t do yoga for the same reason. Yoga and connective tissue disorders are a dangerous combination. My doctor strongly suggested working on muscle strengthening in order to improve joint stability. In my search for good programs, to this end, I found a studio around the corner called Barre Focus Fitness (BFF). Little did I know, I would become addicted to Barre (a combination of Ballet, Yoga, & Pilates) and fall in love with so many of the teachers and clients. Over the past seven months BFF has become my safe haven, my refuge, and my paradise.

On nights I couldn’t sleep, I would lay in bed looking forward to 6:00 am class. Even on my busiest days, I would carefully plan my schedule around Barre class. While undergoing chemo I suffered from terrible acne and I am embarrassed to admit how much I dreaded going out in public because of it. However, I never had to worry about showing up to BFF, no matter how horrible I looked or awful I felt. The supportive environment comforted me inside and out.

The positive and friendly spirit of the studio continually amazes me. The instructors exude optimistic energy and the other women in the classes create a contagious essence of strength. I live for the challenge of a new sequence of poses and movements. There is nothing better than working so hard that your legs shake like Taylor Swift’s song tells you to. The friendships I’ve forged at the Barre mean a great deal to me.

The lovely ladies of Barre Focus Fitness....
The lovely ladies of Barre Focus Fitness….

About a month ago I was talking to Kelly, one of my favorite instructors, about how Paddy had developed a deep-seated hatred for Barre classes, because it is the only time of day when I leave him home for an hour. He thinks it’s outrageously unfair that sidekicks ever have to be separated from their partner! Kelly emailed me later that day with an idea. She and Amy, the owner of the studio, asked if they could dedicate their every-other-month charity class to Paddy’s service dog school. I was deeply touched by this proposition and Paddy was thrilled that he would finally be allowed to visit his mom’s favorite hangout.

Warning! Looks can be deceiving. These women will kick your butt into shape.
Warning! Looks can be deceiving. These women will kick your butt into shape.

So, this Saturday at 10:45 am, Emily, another wonderful instructor, will be teaching a free class to benefit Main Line Deputy Dog (MLDD). It is a donation-based event and all of the earnings will go towards MLDD’s effort to help people with physical challenges or mental health concerns train their own dogs to be fully certified service dogs. Paddy and I couldn’t be more excited for this opportunity to show off his brand new harness and to represent all of my inspiring classmates and their dogs.

I’ll take mindfully burning my muscles out at the Barre over uncontrollable nerve pain any day. Thank you to all my “BFF”s!

Tallying Thankfulness to Tip the Scale

I haven’t been able to bring myself to write lately, because I’ve felt as if my thoughts weren’t worth sharing. Stuck in the wrong frame of mind—quite frankly, I’ve been in a rut!

This seems almost sacrilegious considering the circumstances. Three weeks ago, I flew out to South Bend to celebrate my birthday with all of my Notre Dame friends. Just a week after that I flew to Rome with my parents for a private Papal audience. How could it be, that after the unfathomable privilege of meeting Pope Francis, I was left wallowing in self-pity?

Here’s the simplest way I can explain it:

Pretend your attitude is like a double-pan balancing scale. There is a negative and a positive side, and whichever end is heavier determines your overall mood. Anything that causes emotional turmoil, such as worry, anger, or fear, contributes to the weight of the negative side. Conversely, things that lift your spirits are collected in the opposite ‘pan of perks’.

balance

Living with a chronic illness feels like having a perpetually lopsided scale. Throughout the day the pain, grievances, and frustrations pile on, tempting you to give into the “dark side” and sit with your sorrows. Sometimes, when I experience a flare-up of symptoms or receive upsetting test results from my doctors, I throw in my towel and give into whatever is dragging me down. On days like those, I pay the price and end up going to bed bitter.

However, recently I’ve been coaching myself to utilize a little trick I like to call “Tallying Thankfulness to Tip the Scale.” All I have to do is deeply appreciate every little blessing throughout my day in order to accumulate positive sentiments. A game-changer I’ve learned along the way: No accomplishment is too small to celebrate!

My illness is always, without fail, worse in the evening. As the day goes on, my state of disease progresses. I am grateful for this constancy, because I can use this knowledge to my advantage. Since I know the night is something to be dreaded, I spend all morning and early afternoon filling up on positives and stacking the odds in my favor.

What are a few of my recent negatives?

  1. Biopsies from a colonoscopy preformed last month came back positive for Inflammatory Bowel Disease (either Crohn’s Disease or Ulcerative Colitis).
  2. Five weeks out, I have yet to see any reduction in symptoms upon completion of chemotherapy.
  3. There is strong suspicion I have either a chronic cerebral spinal fluid (CSF) leak or a vagus nerve entrapment at the base of my skull, which is exacerbating my symptoms. In order to explore these options, I will be working with a team of doctors at Stanford University Hospital.
  4. My great-uncle Joe passed away earlier this month. He will be mightily missed by everyone in the Fitzgerald-Petrone family.

(More importantly) What are a few of my recent positives?

  1. I started attending Drexel University this quarter. Although I am working on a very light course load, I am glad to have this distraction to keep my mind busy.
  2. I had the immense honor of meeting Pope Francis. As I gently shook his hand, in the Apostolic Palace, I said, “Holy Father, we love you.” He softly replied with a smile, “Please pray for me.”

    Frances meets Francis.
    Frances meets Francis.
  3. I had a spectacular 21st birthday celebration in South Bend with all my frieNDs. One of my all time favorite things to do is to dance the night away.11013395_10153270282209917_2111653345340140107_n10845673_10153270356329917_1852063030174147273_o
  4. My host parents, Lori Ann and Johan de Wet, from my student exchange to South Africa in 2010, are planning to visit on May 20th. It has been 5 years since I’ve seen them, but my love for them is like the sumptuous wine they make on their vineyard—“it just gets better with age”.60068_477383736292_3435671_nIMG_3173
  5. My ‘big sister’, Caroline Kozub visited from Boston this weekend, to run the Board Street 10-miler. CONGRATULATIONS TO ALL THE RUNNERS! DSC_0004
  6. Last week Paddy did tremendously well at MLDD service dog training. I’m proud of the great strides he is making. It is humbling to watch our partnership grow stronger every day.

    "It's tiring being so perfect! Thankfully mommy lets me be her lap dog..." -Paddy
    “It’s tiring being so perfect! Thankfully Mommy always lets me be her lap dog…” -Paddy