SURVIVING CHRONIC TO THRIVING EPISODIC
June is Migraine Awareness Month, which presents me with an opportunity to share a story that I haven’t, until now, known how to explain. June also officially marks 1 YEAR OF EPISODIC MIGRAINE! I’m sure people have noticed an improvement in my health over the last year. I seem to be healthier - more active and fit. While I am doing better, I still manage chronic pain. I would like to fill the gap, of the last year, for my followers. I think it’s important to be authentic, which means sharing the crappy stuff too. So bare with me, this is not easy for me to revisit - even a year later.
My Migraine Awareness 2017 Supporters of Shades for Migraine! I am fortunate to have a large family support system, as well as my boyfriend- Paul, our German Shepherd- Bear, and the cutie I nanny- Flynn and his supportive parents.
EPISODIC means that you get LESS THAN 15 MIGRAINE DAYS A MONTH. Many of you know that for most of my life I've had migraine to some degree. It wasn't until I was in college, at The University of Missouri, that I became debilitated, and I mean bedridden at least 5 out of 7 days a week with CHRONIC MIGRAINE. Chronic migraine is more than 15 migraine days a month and for me, it looked like 25-31 migraine days a month. It was rare to have a “migraine-free” day, I grew to accept always having some level of a migraine and constant pain as 'normal'. Doctors cautioned me to have “realistic expectations” with every new medication, treatment, and clinic. I didn’t want to acknowledge it but I was really disheartened that even my lowest expectations were not fulfilled and I usually had very little improvement.
Calendar over 2016-2017 showing chronic, 15+, vs. Episodic, -15.
Note: Stickers went from "Migraine Free", originally :) to "Migraine", originally "X" once the majority shifted!
This photo is of me in the hospital following a LUMBAR PUNCTURE that resulted in a SPINAL MIGRAINE over Memorial Day weekend last year (2017). Lumbar Punctures are done to detect potential underlying causes for migraine when it's been unclear why there is no improvement after many avenues of treatment and care.
I had little to no improvement for about 5 years with my disease. I was stuck in a state of constant pain, or INTRACTABLE MIGRAINE. I had been a patient around the country at different specialists and top clinics but I was always considered one of ”their most challenging patients”. It was incredibly depressing to essentially feel like a lab rat, to be unable to care for myself and need my mom or boyfriend to shower me, to be poked and prodded by endless needles, to stump every new doctor, to be hopeful that each new procedure or drug would work so much so that I would ignore severe side effects because even a slight 'improvement' held so much promise.
I convinced myself that I was handling things well and that I could continue to push through without taking a step back or appreciating my situation for what it was. I had lost touch with myself, with my body, with what was a symptom or side effect, and checked into survival mode. I became afraid of doing pretty much anything because debilitating attacks were a guarantee. My weight had fluctuated dramatically as a side effect from different drugs so many times that I stopped caring at all. Like, I never once thought to myself “Wow, you’re really heavy” or “Wow, you're looking thinner.” My appearance wasn't my concern. I was dealing with numbness in my limbs for extended periods, major and I mean MAJOR hair loss, spouts (weeks/months) of severe (chronic) nausea and uncontrollable vomiting, muscle spasms, aphasia, photophobia, major attention/focusing issues (college was extra fun), inability to recall from short term memory and a slew of other weird cognitive symptoms. I had developed muscle tremors and muscle atrophy. I was sensitive to certain smells and sounds that no one else seemed bothered by. A day outside of bed usually equaled 5 in bed or sometimes an ER visit when I pushed myself too hard (as in went to two classes, or a lunch with a friend, or drove anywhere).
Pictures from college (the chronic years) of symptoms, treatment, ER trips, and three different migraine clinics/institutes. Ending with Graduation Day, I missed the ceremony because I had a migraine attack and threw up in the car on the way there.
I was definitely not making any progress. I was surviving. Life from bed, in chronic pain, was; injection to injection, hour by hour, morning to night, TV show to commercial break to the next TV show. Thinking of potential meals, trying to get hungry, force feeding myself, feeling like shit, throwing up, getting sicker, calculating the dollar amount of medication and food that I just threw up -- repeat. I was alone a lot, my boyfriend, Paul, was the only human I saw on a daily basis (a top pick of humans, if you only get to see one). Our German Shepherd, Bear, literally laid by my side, sat at the toilet, licked tears off my eyes, and somehow made me smile everyday. I maintained feeling connected through my phone when in reality I was super isolated. I talked often with my family back home, in Chicago. I also used social media avidly. I escaped on social media looking at all my friends and family and total strangers living their lives. I kept up with my interest by following different accounts. I listened to a lot of audio books and podcasts and read as many articles as I could before my eyes got sore. I was never jealous or resentful, I just wondered how I could have that. How could I get the things I wanted from life when I had migraine and so much pain that functioning normally was so hard? I was unsure, but I knew that I would figure it out. Without realizing it, I started manifesting a new life. At the start of 2017, I wrote in my journal, “cultivate your own relief” and by 2018, I felt, I was successful. It wasn’t simple by any means.
Over the Memorial Day Weekend last year (officially 1 YEAR ago, now), I had a lumbar puncture in the attempt to discover potential underlying causes of chronic migraine that were overlooked. You might be more familiar with the term “Spinal Tap”, which is the same thing as a lumbar puncture. At that time I had already done EKGs, a TTE, colonoscopy, endoscopy, (I’m sure I am forgetting a test) over the last year. I had developed persistent daily vomiting and was having trouble gaining an appetite, eating, and keeping food down. No doctor could explain it. I also started developing unexplained bruising and rashes and my physicians were concerned about autoimmune diseases. I saw the comorbidities stacking up and I felt out of control and helpless.
Every time I visited home and eventually anytime I went anywhere, people were commenting on my weight. It made me so uncomfortable that my only visible symptom was weight, explaining daily vomiting felt like a stretch when I talked to most people and I was just embarrassed. I used to feel crazy telling people that I get migraines daily, but explaining daily vomiting prompted a lot of raised eyebrows and tilted heads. I realized that I must have been very heavy before, for this to be the first thing anyone says to me now and it just makes me sad. I look at photos from a year or two ago, and I was much heavier, but I was really oblivious which in turn makes me feel embarrassed. Seventy pounds is a lot of weight to overlook, but I honestly did not own a scale and the only time I weighed myself was at doctor appointments, which granted were often. It wasn’t until my clothing started to not fit that I ever realized my weight was fluctuating. I was on steroids and antibiotics and prescriptions, constantly, that caused so many undesirable side effects. I already had anxiety about getting sick when I would go out, but adding all this judgment surrounding my weight caused me to have even more social anxiety.
So right before Memorial Day weekend (2017), I flew home to Chicago and my Mom and I drove up to Ann Arbor, Michigan, where I was receiving care. I had a lumbar puncture, Thursday early morning, and by that afternoon I was in the worst pain of my life. Worse than any migraine attack I had in the 5 years I was Chronic. I was also uncontrollably vomiting and shaking from muscle spasms and severe dehydration as well as overall stress on my body.
There were times over the last 5 years when I had been scared about my symptoms but I had honestly never been THIS scared of what was going on. I wasn’t really sure that I was going to get past this pain the way I had every other time. It felt like I had been in auto pilot, going through the motions for so long, in order to survive, that I wasn’t being diligent enough in my care and that something was actually broken beyond repair or treatment. (Because, why not add self-blame to the mix?) I was convinced by day 3 (with the spinal migraine) that the pain wasn’t going to end because there was no relief in sight.
As scheduled we went to the appointment to follow up with my doctor the next morning. They performed a nerve block (that’s why there’s a bump on my forehead in this photo). This time it offered no relief, which was devastating. I got this nerve block every 6-8 weeks when I traveled to Ann Arbor for follow up care. Normally this gave me about 48 hours of relief!!! That was something I looked forward to during the weeks leading up. I was THAT desperate for relief that needles in my face, side of my head, and back of my neck, were something I grew to look forward to despite it being a very painful procedure. My mom or Paul held my hand every time and in the other I squeezed a stress ball.
My pain remained incredibly severe, and if I’m being honest I don’t remember much from the next day or being there. My mom was dealing with the doctors and I was so debilitated that I couldn’t move on my own or stop throwing up. My mom took me to the ER. My pain was still incredibly high but with IV fluids I was “stable” and discharged. Within an hour of being discharged my pain was out of control and the vomiting began again. My doctors were not available over the holiday weekend and without any plan of action for the long weekend, we were left to wait it out (Ya, I’m serious). It was clear that my case was mishandled and that mistakes had been made on the doctor/clinic’s end and instead of being part of the solution, I was sent a letter by their lawyer advising me to keep quiet about my experience under their care, which is why I do not name them. Obviously we felt abandoned in our time of desperate need and this grew some mistrust towards medical institutions.
My mom packed the car and took me back to Chicago, from there we waited a day to see if this would subside (we were told it’s common for spinal migraines to heal on their own, but we honestly had no idea what to do at that point).
You’re probably wondering what was happening to cause this? A spinal migraine is caused when the needle they use to puncture the lumbar does not heal properly and instead it leaks. It’s considered postural because anytime you are upright the spinal fluid leaks to the brain, causing extreme pain and all the other symptoms I was having. It’s possible for that hole to heal on its own with time. Unfortunately, that wasn’t the case for me. It was also explained to me that a spinal migraine only develops in a very few number of patients. (Queue: why me thinking?)
Photos from Memorial Day 2017
With no improvement and things quickly getting worse, my mom, god-mom, sister, and cousin Amanda, took me to an ER in Chicago - where I had previously established care with a neurologist. Paul had just started a new job and wasn’t able to leave Kansas City (our new home), nor did I share with him how severe things were. I wasn’t really able to use my phone and my mom didn’t want to scare him. We also were beginning to remodel a property and Paul couldn’t leave that or our dog. Paul and my mom operate like a team when I am sick, they take turns 'subbing' in based on work schedules and proximity, text often, and between the two of them I feel like the luckiest girl in the world- even with chronic migraine. I remember that I was so upset to miss Jazzoo, an event in Kansas City that we attended with Paul’s family, annually. I had put the perfect outfit together and was maintaining hope that I would get there, even though there was no chance that was happening.
Our first Jazzoo together. Age 21& 22.
They weren’t able to do the blood patch in Chicago without prior notice over the weekend, so I had to wait until Tuesday. And by wait, I mean writhing in pain and endlessly vomiting. I couldn’t sleep, I couldn’t eat, I couldn’t keep fluids down, I couldn’t move without severe pain, I couldn’t be still without severe pain, I constantly had to pee, I was having ongoing muscle spasms, it was the most unimaginable pain I’ve ever been in and at that point I was honestly praying to die. I could not imagine continuing to live life this way, traveling across the country every other month to get care at the age of 25, care that wasn’t helping, pushing pills down my throat and injections into my legs nearly everyday to numb the chronic pain for a few hours. My hopes and wishes, dreams and goals, felt really far away at that point. I told myself that I was done with this in that moment. I rejected being sick and made my mind up to stop living this way and feeling this way.
Now I still obviously have chronic pain but I’ve found ways to manage it more effectively so it’s not running my life. Instead of living to SURVIVE and feeling stuck in my chronic pain, I committed myself to using my illness as a way to create a life that I could THRIVE in.
This experience lead me to deeply question the root cause and push even deeper in terms of understanding my chronic pain. I shared in May that I have a diagnosis of hypermobility and potentially Ehlers Danlos Syndrome (EDS). That diagnosis largely developed because of my experience with the lumbar puncture. The soft tissue that didn’t heal from my lumbar puncture was a big piece to the puzzle, and lead many doctors to believe I have EDS. Earlier in the same week, of the lumbar puncture, I had also gotten benign fatty tumors removed from my shins, the recovery of those wounds was improper and have left me with some super cute scars and a lot of evidence of EDS (because poor wound healing is a main symptom of EDS.)
Benign Fatty Tumors that healed improperly, further supporting EDS diagnosis. From day 1 to over a year later!
They performed the blood patch Tuesday afternoon and my relief was instantaneous! Like a miracle, I almost kissed my doctor. It was a weird procedure where I was in a surgical unit but awake and talking to doctors and nurses as they numbed my back, drew sterile blood from my arm, and injected it into my lumbar. They had me lay on my stomach with my arm above my head, but totally still. The nurses told me this was basically the equivalent of two epidurals in one week, but they may have just been really nice. I had to lay flat for a couple of hours and then we tested it. So much anxiety surrounded this moment but I stood up and walked slowly and I felt fine. I was discharged and sent home with careful guidelines. Recovery was brutal. I wasn’t allowed to be active or move, and I had to be careful not to bend or turn. I envisioned a thin sheet of fragile blood that could pop if I moved incorrectly. I was to lay flat on my back, preferably without a pillow and to not move in my sleep. No driving was allowed for a few weeks, basically I was back to being bedridden for the next 6 weeks, minimum, (because of concerns of EDS and the complications I had, my recovery was slower than normal.) I was really tense and afraid of doing myself harm but I also felt myself getting weaker as I wasn't able to move - my muscles were not happy. I was nannying at the time and I had to dramatically cut my hours back, forfeiting nannying as my main income. When I returned part time to work, I couldn’t lift anything over 10 pounds, like Paul was carrying my purse for me. It broke my heart to be unable to lift, and therefore care for the baby I was nannying (who was just about walking) but the family generously kept me on once a week and rode it out with me. For most people this seems inconsequential but to me, I had begun building a new path and felt like I was potenitally going to be starting at square one, as I had done many times before as a consequence of my migraines.
Encouraging texts (&flowers) from my support system back in Kansas City!
So at 25, instead of the life I expected and planned for; law school, marriage, another dog, new home, etc.
Birthday, age 24, 25, and 26.
I organized all new care in our new home, Kansas City, and began to approach my health in a new way. One where I was in control, not my doctor or medication, or my diseases.
When that was working well for me, I decided to make some changes and approach life differently all together. While Paul was remodeling our home, I remodeled my life.
Glimpse of where the remodel was June of 2017. And a couple extra : )
I detoxed all of my daily prescription medications.
I strictly followed a gluten free, dairy free diet, and avoided processed sugars or anything with hormones added.
I invested in my health, financially and mentally.
I found workouts that I could do and I stuck to them, even when I didn’t want to.
I found a community that encouraged me to come back and work out again.
I changed the way I talked to myself, the way I treat myself, the expectation I put on myself, and almost everything got better.
I sought out mentors.
I surrounded myself with the people who loved and supported me when I was down, and I tried to meet people who inspired me.
I still deal with a lot of migraines and pain but it just feels much more under control and manageable now.
I am sharing this because I’m overwhelmed with gratitude for where I am today, a year later. I have been episodic for ONE WHOLE YEAR, which feels like a dream, like I’m actually crying writing this! I am getting closer to a diagnosis, and understanding and managing my conditions more effectively and am living a full life. Although I still live with chronic pain, I make a choice to THRIVE and “Liv-fully”. I spent this Memorial Day Weekend on the beach in Florida with Paul, Bear, and some friends who supported us when we went through these difficult times. Over the last year, I have started training to be a Pilates instructor. I have traveled to D.C. and New York as a patient advocate, and to Arizona, Florida, and even Michigan for FUN! All of these are things that the year before would've been impossible for me to fathom. I never take for granted the good days I am granted and I work hard to continue building more. Nothing is perfect or totally figured out, but I am finding beauty in the imperfections of my life with chronic pain.
A few highlights from the June 2017- June 2018.
My first day back as a nanny, Bestie- Ryan took me out, I drove MYSELF to and from Columbia, MO for a my friend's bridal shower, My mom helped Uhaul my stuff from Chicago to KC and then stayed to visit, my sister- Alyse visit us in KC over summer 2017, We went to Chicago to celebrate my grandma's 81st birthday, trip to Washington D.C. for Headache on the Hill, trip to New York for Amgen Migraine Blogger Summit, trip to Arizona for my cousin's bachelorette weekend, vacation in Florida for our friend's destination/beach wedding!
I want to share my journey to help others who go through this weird unpaved path because I know it feels lonely and I want people to know you are never alone. I share because it is normal to have doubts, to want to give up, and to strive for a life that’s full. You deserve it, and regardless of what doctors think is a “reasonable expectation”, or how far away it feels, a life you love is ALWAYS obtainable and YOU are ALWAYS in control.
I will continue to share details on how my lifestyle and care has changed and the new ways I maintain my health, and follow up on my diagnosis story in future blog posts! I hope you enjoy and find my blog and myself as a resource to LIV-FULLY!