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chronic illness

chronic illness, healing, health

The Unbroken Chronicles, Pt 3: The Big Picture

February 14, 2016
the unbroken chronicles: healing from fibromyalgia and chronic fatigue

ESTIMATED READ TIME: 17 MINUTES


Recovering from Chronic Illness: The Big Picture

Read Part 1 Don’t Be a Superhuman
Read Part 2 A Good Healthcare Team

>>–<<

In the summer of 2002, I had a very bad car accident that initiated the process of becoming chronically ill. 11 years later, I was still struggling with these illnesses (fibromyalgia and chronic fatigue syndrome/ME) and doing everything I could to not give up and keep seeking answers and health. You can read a little more about where I was in May 2013, 11 years from my initial diagnosis, from my post (You are Not) BROKEN. This is a blog series about that journey and what I did along the way that ultimately led be to being healthier than I was pre-diagnosis. DISCLAIMER: Fibromyalgia and chronic fatigue syndrome are very unique and complex illnesses. I am not suggesting that my path to wellness will work for others. I am hoping by this series that I can encourage others who are ill on their own journeys to wellness. Please be sure you have a good doctor and consult with them!


F

rom a western medicine perspective, we often seek to resolve a symptom, be it through medication (which either helps the body heal or just masks the symptom) or physical treatment/intervention. But what happens when your symptom list is endless and growing in every direction? Either you end up on more medications/interventions than you can count, or you seek the root cause(s) and aid the body in recovering from there. I was both of these cases.

My illness journey started with a car accident and continued to worsen and “deepen” through years of circumstances that weren’t conducive to healing, despite the incredible doctors and practitioners that were working with me. Some of my contributing circumstances were very personal, but I’ve decided to start writing about them in hopes that even just one person out there can be helped along in their quest of healing. I have waited years to share some of the things in this post, and do not write it with any amount of animosity or mal-intent. But there was someone, also chronically ill, in my life that shared some of her struggles along the way and what she shared with me gave me a sobering view into my own future and thus helped me change my course, and I’ll always be grateful for that. Please read the following with this in mind.

Ok, deep breath. Basically, here’s what happened:

  • (2002) A car rear-ended me and pushed me underneath the one in front of me. Not only did I suffer some significant musculoskeletal injuries (herniated and bulging discs and good-ol’ whip lash), but it FREAKED OUT my nervous system. Suddenly being under another car is really scary.
  • I traveled across the country to see one of the world’s best osteopaths that I knew through my gymnastics connections. I made serious progress from this treatment, but quickly relapsed upon returning home. My nervous system stayed freaked out for a long time. My docs talked about how it was all they could treat really for the first 6 months because my sympathetic nervous system was so engaged that it wouldn’t allow the tissue to be treated or hold treatment.
  • I was sooooo determined to keep my injuries from turning chronic that I initially over-treated, not giving my body enough down time between treatments. This turned out to be counterproductive in two ways: first, I was overwhelming my body with treatment, and also, the stress of getting to all of my appointments (8/week) as a injured college student with an over-loaded course schedule contributed to keeping my nervous system raging. I needed rest and I wasn’t getting it.
  • When your body is in constant “fight-or-flight” mode, things easily snowball because everything is “life or death.” This is when it’s common to start developing allergies (normally the type that short-circuit your system back into crisis/fight-flight mode, not the anaphylactic type) to anything and everything, which I did (but didn’t know it until many years later). When you eat or are exposed to something and your body is literally trying not to be killed from a nervous system perspective, the body often associates that food/substance exposure with its crisis mode. MUST BE THAT APPLE THAT IS TRYING TO KILL ME!!! MUST AVOID APPLES!!! THEY ARE DEADLY LIKE GRIZZLY BEARS!!! Interestingly, this is apparently commonly seen with caretakers as they are always present and the body starts to think they might be the problem. Yes, you can be allergic to people.
  • Spend long enough in this crisis mode and not only will you possibly develop allergies/sensitivities to anything and everything, but all other systems in the body start freaking out and malfunctioning too. This is part of why fibromyalgia/chronic fatigue syndrome/ME patients have such varied symptoms that seem completely unrelated. Everything just stops working.
  • Meanwhile, my physical injuries were real and were getting worse. I was put on lots of meds, but still, no rest. I pushed through my courses and took medication to try to just make it through each day. I would drive myself to school and pick up a friend on the way. As soon as I got to class, I would take my medication which would allow me to sit through class (I also had electrodes all over my body for pain management and carried around tempurpedic seat cushions to each class). My friend would drive me back to his apartment after our classes and I would crash until the meds wore off and I could safely drive again. I did this for a whole semester.
  • I had a few lawsuits going on with insurance companies trying to get my doctors paid and they were terribly stressful. They lasted 7 years (I finally gave up) and certainly contributed to my stress-load and inhibited healing. To this day, I detest the phone and mail because during those years, phone calls and mail = stress and unresolvable issues.
  • (2003) At this point, my quest to not have chronic illnesses ended with chronic illnesses. And once you are treating chronic illnesses and chronic pain, it’s a whole different ballgame than treating acute injuries. I knew I had turned the corner into chronic territory, but didn’t fully “buy” my diagnosis of fibromyalgia. I had heard it was a “poo-poo” diagnosis and so I kept looking for another reason I was so ill.
  • I never stopped treating (see what I did here), but I shifted my approach. I was doing the best self-care possible, but making very little progress, if any at all. We had to get down to the deepest rooted causes at that point to be able to unravel the rest. Most of my doctors seemed to agree that there was this quest to find this key aggravating factor, but no one really knew what it was. The general idea was that there was still something that was either aggravating my nervous system, I potentially had leaky gut, a latent virus and a rewired hypothalamus.
  • Life continued in this way for years. Through those years I graduated from college (2005) and started working, at which point I was doing relatively well. I was in a great relationship and remember enjoying life, as well as being able to work long hours without totally crashing. The next year I changed jobs (2006), the following I got married (2007) and within a few months everything started to get much much worse. I was given more medications to try to keep me in my job. I was stressed and depressed. Things at home weren’t healthy either, so I had no place of peace or “safety” in my life (I was physically safe—I’m not insinuating abuse or violence here). The prognosis and diagnosis was not good and there was seemingly no hope of ever being healthy again or having my life back. At 25 years old, I felt and functioned like 80.
  • (2009) In search of someone that could help me change course, my osteopath sent me to a world-leading fibromyalgia/chronic fatigue syndrome specialist in North Carolina. We booked our flights and hotel and took off to Charlotte, NC to see him. He was the first to tell me why my fibromyalgia and chronic fatigue syndrome diagnosis actually made sense and fit all of my symptoms, which was at least incredibly validating. I wasn’t crazy, but I was definitely very ill. He also told me that in about 7 years of “doing things right” I could be better/recovered. VALIDATION and HOPE. 
  • Rest became a theoretical focus at that point, but with my demanding job, it was not very feasible. I had to keep my heart rate as low as possible to avoid post-exertional malaise (PEM) and crushing fatigue, but my resting heart rate was only a few beats a minute below my limit. I increased water and salt intake to try to increase my bottomed-out blood pressure. I had a handicap decal to limit even walking across the parking lot to my office building, as that walk could kill my entire day. When I had to climb stairs (I had two flights in my house), I was told to stop mid-way each flight to allow my heart rate to go back down before continuing to climb.
  • (2010) I finally stopped working due to the strong exhortation of this specialist (Dr. Lapp at Hunter Hopkins Center). Where the year before he told me I could recover if I did things “right,” this time he was telling me I was borderline irrecoverable and had to stop everything and rest. Scary decision, but it was imperative. I was supposed to just be out for 6 months, so my husband temporarily took over my Creative Director position. My specialist also put me on yet another medicine (my 8th or 9th I was taking at the time) as I was not coping emotionally with the state of my health, my lack of progress, and now the loss of my ability to work and be independent— I knew I was not in a good place. SETBACKS.
  • For the next 4 years, I almost never set an alarm clock. And the few times I tried to get up early for a special event or even a day trip, I ended up going back to bed in tears as I just couldn’t function. I wasn’t remotely able to go back to work in 6 months. I slept most days til 11:30a on average, 1-2pm on a bad or “recovery” day. My life was finally reduced down to rest and doctors appointments.
Chronically Ill Melissa

These were the absolute best photos of me from 2011-2013. They were all “my favorites” and used as various profile pictures. I never realized how empty I looked as I thought I was doing a darn good job of putting on a happy face to the world, no matter how sick I felt inside.

  • (2012) But that wasn’t enough. I was still ill and losing ground, just with less pressure on me to perform much of anything on a daily basis. My list of symptoms was around 35-40. Luckily my husband had taken over most of the household tasks like cooking and cleaning. A chiropractic evaluation revealed that my spine, and thus nervous system, were severely impacted, and structurally resembled that of an 80 year old. We did some nerve conduction tests as well and for the first time, I had an image that corresponded to some of my pain and dysfunction. Red everywhere. MORE VALIDATION.
  • We started treating with chiropractic adjustments and started to see some improvements in the images and diagnostics, but still little improvement in my symptoms. One of my doctors was convinced there was “Something I was putting in my body that was pissing it off” (her words exactly), and so she wanted to run allergy panels. It came back with me allergic to nearly everything, and especially all the super healthy foods I was trying to nourish my body with. I was put on an elimination diet which meant I could not really eat healthy and balanced nutrition since I had become allergic to all of it.
  • Through more testing with another doctor, we found I wasn’t just allergic to foods, but all sorts of things. Like both acid and base digestive enzymes. So, even if I wasn’t allergic to the food, I was allergic to the processing of every. single. thing. that I ate. We started treating these types of things that were constantly present in my body (also, some hormones and neurotransmitters), and while my diet improved, my health was only showing tiny improvements. There was still something else.
  • (Early 2013) We had tested and treated so many things that I was starting to be able to identify when I was having a reaction (since my body was no longer constantly reacting to ever-present things like hormones and enzymes) and isolate the cause. PROGRESS. With this little bit of progress, I trepidatiously returned to working some weekends as a gymnastics judge in efforts to have something in my life that resembled me and my passions. Even though that required alarm clocks for the first time in 4 years and long days, I would always feel better during those weekends. Usually they involved traveling and hotel stays, which became our next clue.
  • The new quest was to find what in my bedroom/home was the culprit (bedroom was especially suspect because I would wake up more ill than I was when I went to bed… Throbbing pain, itching/burning, “crawling skin,” burning sharp pain when I put weight on my feet, immobilizing and oppressive fatigue). After a few months of mattress, pillow, bed frame, carpet, tap water, insulation, dog, furniture testing/treating, still very little progress.
chronic pain in feet

Two artistic representations of how it felt to put weight on my feet each morning. First image: source unknown; second image: Mark Collen, “CP II” plaster with steel blade sculpture, painexhibit.org.

  • Finally, this doc said “I need a sample of [my husband’s] DNA.” Sure enough, I was VERY allergic to him. This explains why I would start flaring up immediately after going to bed, wake up in terrible shape and feel better on the weekends when I was away. We had little contact through the day as I would get up long after he was gone and he would go out most evenings without me… frequently coming home after I was in bed. This wasn’t every day, but it was common. This also potentially explains why my health went from relatively functional to massive relapse in my first month or two of marriage.
  • My allergy to him was not limited to a contact allergy, but also produced when coupled with certain emotions (fear, betrayal, disappointment… among others) or activity in certain lobes of my brain. Literally the chemicals produced with these emotions and neurological pathways used in these areas of my brain, when coupled with exposure to his DNA, produced a reaction. These rounds of testing were fascinating and very specific, as well as a bit telling of the dynamics in our home. We were able to get me to stop reacting purely to contact, but the reactions wouldn’t resolve with these pairings that were obviously more deeply and complexly rooted in my nervous system. SPOILER ALERT: there was a reason this was happening and wouldn’t resolve. Back at the office of my North Carolina specialists, in my April appt that year, I was strongly warned “DO NOT have a baby with this man. It will destroy you and every amount of progress you have made. I’ve seen this happen time and time again.” GULP. Kids were always theoretically in the plans.
  • (June, 2013) I went to Paris with my mom for 10 days. Paris had always felt like where I belonged in life, and I had long had dreams of living there, but I gave up on them many years back believing it would be impossible. During those 10 days, I felt 100% healthy again. 100% me again. 100% hopeful again. As if, FINALLY, those thousands of doctors appointments and treatments had been able to make a difference. I also danced for the first time in years and felt in that moment more alive and more me than I had felt in at least 7 years.
dancing in Paris, 2013

The moment when I re-discovered “Melissa” in a Paris metro station, June, 2013.

  • Once I got back home, my health started to deteriorate back to normal a little more and more each day. We were still treating me for this DNA allergy and finally I had the bravery to ask my doctor “Will I ever be healthy in this relationship?” It was a hard question to ask because I had to be ready to respond to the answer, and up until that point, I hadn’t been that brave or ready. (He said “no.“)
  • So, I had the choice to be sick for the rest of my life by choosing to stay in a literally toxic relationship, or get out… Which was something I had known deep down I needed to do from probably month 1, but was never the plan. While my marriage was not the CAUSE of my illness, it was certainly the ROADBLOCK at that point in my quest for health and healing. Anguishing reflection followed … my heart and head knew the answer, but my lips were unable to articulate it for months.
  • (August/September, 2013) We made the decision to end the marriage, with every intention to restore the friendship upon which it was built. I literally was feeling 50% healthier within days. When your body knows someone is “threatening” (be it to your physical or emotional well-being), it does what it can to warn you and protect you from this threat of danger. The “danger” was at least lessened with a newly-forged door at the end of the tunnel … and my body responded.
  • (Summer, 2014) Five months after the divorce was finalized, I moved to Paris as a way to relaunch my life, continue healing, be in an environment that supported those goals and connected me with me. I had always known I belonged here—it was like Paris was my “soul-city” and every time I was here, I just felt like I was made for this place. Nonetheless, it was a HUGE risk because I was leaving behind my healthcare team I had depended on for so many years (among many other risks), had no idea if I would be able to make it with the new demands that would be placed on me, and I was risking a potential huge health crash. But nothing is gained without risk and I had my whole future on the line—and a reassuring gut feeling that this was my next step forward.
  • Paris is amazing. But I’ll never say it’s easy (maybe once I’m truly fluent and can apply for citizenship in about three more years, it’ll at least be easier!). I have been on a student visa, and after 18+ months of intensive language learning and visa issues, I’m honestly tired. I think anyone would be tired, I am just more susceptible to the crash, the disrupted sleep-cycle and the mental overload. I’m not back to work, but I’m back to living. I have learned my new limits and am currently working on several adjustments that should bring me more balance and keep me healthy and within these limits. But, even on my most fatigued days, my life now doesn’t remotely resemble my old sick life. I do things I was not remotely able to do for over a decade. I proved to myself that I can again do hard things. I do things I love. I dance. I exercise. I laugh and love and socialize. I have literally climbed some mountains. I feel like I am playing the leading role in my own life. I’m in a place that makes me feel alive. Where once I had stopped dreaming and was only trying to survive, I am again dreaming of the future and actively taking steps to get there. I’m in a supportive and secure relationship. Everything has changed. Everything is being renewed.
Left: This night of dancing a few days after arriving in Paris in June, 2014 marked the beginning of my new life here. Right: Soaking up a sea-side weekend in France in the fall of 2014.

Left: This night of dancing a few days after arriving in Paris in June, 2014 marked the beginning of my new life here. Right: Soaking up a sea-side weekend in France in the fall of 2014.

climbing mountains in South Korea

We climbed some mountains in South Korea. Maybe not the world’s tallest, but one of them was even climbed at 5:15am… nothing short of the impossible just a few short years before. I loved every moment.

I feel like I am playing the leading role in my own life.

Now 14 yrs past my car accident, I can surely tell you that there was no one cause (even though it started with the accident) and no one solution. I would have never recovered by treating one element and not searching for the others. Some things that I was able to do along the way would have NEVER been possible without the years of work/treatment that proceeded them (like working on the weekends, starting to dance or exercise again). I would have never recovered if we stopped after finding my 200th allergy. I would never have recovered without a multi-faceted approach. I would have never recovered while still in my marriage.

I’m not a doctor. I’ve learned a lot through the years, but my “expertise” starts and ends with MY experience in MY life. Some of the treatments I’ve done are so fascinating I can only start to wrap my mind around the theory, but fortunately I had some of the best doctors working with me and I trusted this team with my life. I’M NOT HERE TO TELL YOU HOW TO HEAL. I’m only here to tell my story and encourage anyone that is struggling with these chronic illnesses to look at the big picture and equally give weight and warrant to physical, emotional and circumstantial detriments to your health. Find some AMAZING doctors that look beyond a simple or standard cause and can see the big picture. Find people to whom you can report any random change in your body, and who are intuitive enough to know when it’s significant. My osteopath apparently knew for the majority of my marriage that it was inhibiting my healing, but she also knew I wasn’t ready or willing to end it, so she did her best to treat my body in those circumstances. When I was ready to move on, she was able to support me in that as well.

I’m only here to tell my story and encourage anyone that is struggling with these chronic illnesses to look at the big picture and equally give weight and warrant to physical, emotional and circumstantial detriments to your health.

The questions I sometimes wonder are if I could have avoided the metamorphosis from acute to chronic by taking a semester off of school immediately and focusing on the right amount of treatment and rest from the beginning? We will never know. I still think I would have relapsed with my marriage, but there is no way to be certain. Nonetheless, I have no regrets as going through what I went through for those 12 years taught me so much and brought me to where I am today… Which is EXACTLY where I want to be.

The other thing that gives everything that went through value is when I can share my experiences with others in a way that may help them find their light at the end of the tunnel. Don’t hesitate to connect with me if you have any questions or just need an understanding ear!

a_plus_tard_m-sharing

chronic illness, healing

The Unbroken Chronicles, Pt 2: A Good Healthcare Team

September 16, 2015
the unbroken chronicles: healing from fibromyalgia and chronic fatigue

ESTIMATED READ TIME: 15 MINUTES


Recovering from Chronic Illness: Assembling a Healthcare Team and Plan

Read Part 1 Don’t Be a Superhuman

>>–<<

In the summer of 2002, I had a very bad car accident that initiated the process of becoming chronically ill. 11 years later, I was still struggling with these illnesses (fibromyalgia and chronic fatigue syndrome/ME) and doing everything I could to not give up and keep seeking answers and health. You can read a little more about where I was in May 2013, 11 years from my initial diagnosis, from my post (You are Not) BROKEN. This is a blog series about that journey and what I did along the way that ultimately led be to being healthier than I was pre-diagnosis. DISCLAIMER: Fibromyalgia and chronic fatigue syndrome are very unique and complex illnesses. I am not suggesting that my path to wellness will work for others. I am hoping by this series that I can encourage others who are ill on their own journeys to wellness. Please be sure you have a good doctor and consult with them!


I was “fortunate” enough to have a jump-start on finding my team of doctors as I had had my fair share of gymnastics injuries. Along the way, I found my acupuncturist and traditional osteopath (actually, two of them) which were critical to my healing and also building the foundation of my healthcare “village.” At the scene of my accident, I called and made an appointment for acupuncture in every attempt to be proactive, which has always been my modus operandi since day one.

I assure you this post will already be long enough, so I will save you the 13 years of history of my treatments, and rather focus on the ones that worked for me. But first, a list of what I did along the way, more or less in chronological order of when I started them:

  • Acupuncture
  • Traditional Osteopathy
  • Medication + Supplements
  • Myofacial Massage and Rolfing
  • Physical Therapy
  • CFS/ME/Fibromyalgia Specialist
  • Chiropractic
  • Trigger Point Injections
  • Elimination Diet
  • Changed my Diet
  • Counselling
  • Water Physical Therapy
  • NAET (Nambudripad’s Allergy Elimination Techniques)
  • Yoga + Low-Impact Exercise
  • Nutritional Shakes (Shakeology)
  • Change in relationships
  • Moved to France

And, the short list of what didn’t work for me in recovering from fibromyalgia/chronic fatigue:

  • PHYSICAL THERAPY
    This was just not particularly relevant to my actual condition and was prescribed by a western-based doctor as an canned form of treatment for an injury. Yes, I had acute injuries, but my body needed to be treated and rested, not necessarily strengthened. For ME, this wasn’t productive and it was possibly counter-productive at that time that I did it (which was within the first 6 months).
  • TRIGGER POINT INJECTIONS
    These may have made a TINY difference, but really, nothing noticeable that particularly impacted my healing journey. The spots that were treated are still about the same as they were before treatment and if they have improved, it is thanks to chiropractic, not the injections. At the time, I think these gave me a TINY amount of pain relief.
  • ELIMINATION DIET
    This helped, but it wasn’t enough to get me over my allergies/sensitivities and was later replaced with (very effective) NAET treatments.
  • MEDICATION
    This will fall on both lists. I had so little quality of life that each time we added a new medication, it wasn’t without good reason. But, I became a bit of a science experiment and was, in my opinion, over-medicated. Also, some of the meds were band-aids over the bigger problems that then exacerbated my health in general. I am not saying avoid all medications, nor would I do that if I went through what I did all over again, but I would definitely avoid stimulants (although some make a strong case for them). They just gave me false energy (which I desperately needed to survive while working) that allowed me to continue doing things in my life that I shouldn’t have been doing. Thus, the fatigue was exacerbated and continuous. On the other hand, I had some great luck with some other medications in managing some of my symptoms while I was attempting to further heal the root causes.
  • WATER PHYSICAL THERAPY
    I’ve read awesome articles about people healing through time spent in water. I know someone who is “miraculously” healed when he is in Caribbean waters (which is actually more the location effect, the the presence of the water is what specifically gives him relief). I did mine in the pool and maybe not long enough. I generally enjoyed it but no measurable results.

So, if you are doing the math, that leaves a considerable list left of things that did work for me in one way or another… Things that made a tangible impact on my healing and I believe played an important role in the recovery I am experiencing today. I stress, this was MY JOURNEY AND NO TWO ARE THE SAME. I also must stress that health care professionals are not all equal, especially when, 1- in the realm of natural health and, 2- when seeking to treat chronic illnesses like fibromyalgia, ME (myalgic encephalomyelitis) and chronic fatigue. The key to effective treatments is finding the right provider that is a great listener, diagnostician AND practitioner.

  • ACUPUNCTURE
    I’ve been getting treated with acupuncture on and off for almost 20 years. I’ve now seen 5 acupuncturists and can definitely say you need to find a good one, but when you do, this is such a fantastic modality to have on your regular treatment cycle. Acupuncture can treat so many things and can work on both healing the system and treating the acute issues. When I had my accident, acupuncture was my first treatment and when moved to Paris, the first practitioner I found for my new “team” was an acupuncturist.
  • TRADITIONAL OSTEOPATHY
    Two of the three most brilliant doctors/people I know are osteopaths (Dr. Larry Nassar and Dr. Laura Rampil). For me, my osteopaths were THE most intuitive as to what was going on in my body and HOW to treat it. If I could have packed my DO and moved her to France with me, I would have!! With illnesses as complex as these, I think a good traditional osteopath is invaluable as they work on the body as a whole and what is actually going on in the body at the moment from a physical and energetic perspective. I also find they have the perfect blend of appreciation for natural health and western medicine.
  • CHIROPRACTIC
    My first experience with a chiropractor almost swore me off all chiropractic forever. There is a lot of overlap here with traditional osteopathy, so this one didn’t make my list until years down the road. But I did start to see shifts in my spine (which started out being described as that of someone in their 80s, and improved to that of someone much nearer my age) and nervous system function. Along the way I switched to another chiropractor who rounds out my list of the three most brilliant doctors I know (Dr. Joseph Fuller). The diagnostics he did with me and the way he could isolate the exact place I was having some sort of impedance were out-of-this-world. As he is also an acupuncturist and specialized in NAET, his knowledge base was rich and diverse. People travel from other countries to see this guy!
  • MASSAGE / ROLFING
    Here, again, you have to find a GOOD ONE. But when you do, they can make a huge impact on your healing and overall wellness. If you can find one that is a Rolfer or at least very anatomically focused, you will get more than released tension and move into the realm of actual structural treatment. Mine helped correct my posture, normalize my gate and completely change the texture of my soft tissue from that of  iron rods to relatively normal. Mine (Jenny Rock) is also on my list of amazing healers, not to mention all-around amazing human beings. It took lots of hours on the table, but we made serious progress. She was also the source of several of my other referrals, which is definitely a huge advantage to finding other practitioners to round out your team.
  • SPECIALIST(S)
    Through my osteopath, I was referred to the Hunter-Hopkins Center in North Carolina. I continued to see Dr. Lapp for a few years both in person and remotely through phone appointments. The most critical part of adding him to my team was the way he both validated and helped me re-frame my understanding of my illnesses and most of all my limits. As one of the most respected doctors in the field, he was able to explain what and why I was experiencing in ways no one else could, validate that what I was experiencing was not only real but also had an explanation within the scope of fibromyalgia and chronic fatigue, and help adjust my treatment plan and lifestyle moving forward. He was the one that told me I MUST stop working, and, without that step, I’m sure I would have become irrecoverable (as he warned).
  • COUNSELLING
    I am a child of two psychologists, so I believe this can be vital in many situations. I had some trauma from when I was a child that was addressed with EMDR (Eye Movement Desensitization and Reprocessing) and I found that to be effective and fascinating. Likewise, when you lose all you know to an illness, there is a lot of emotional pain and scarring that comes along with that. We often feel so helpless and depression is not only common with chronic illness, but something that shouldn’t be taken lightly. As trauma is often a common pre-disposing factor to fibromyalgia and chronic fatigue, counselling that works on those trauma issues can be incredibly helpful. Counseling also helped me process some big steps I had to take along the way to continue my healing journey.
  • CHANGE IN DIET
    I have always been very interested in health and healthy food, always striving to give my body it’s best shot at being healthy starting by what goes in my mouth on a daily basis. Along the way, I came to the conclusion that I would try a plant-based diet as there is a lot of evidence supporting it as being the most healthy. I did VERY WELL as a (nearly) vegan and started gaining some energy back, got my IBS under control and lost a bit of weight I had struggled with due to lack of activity and medication. I do not believe one diet fits all, but at that point, plant-based foods made me feel best. (I have since re-introduced some animal products to my diet as my body’s changing needs dictated.)
  • NAET
    This one was a game-changer for me. One of my docs suggested I do some allergy testing as we could not make a dent in my fatigue. She was convinced there was something that I was eating that was “pi$$ing off my system,” as she put it; she suspected food allergies and possibly leaky gut syndrome as a result. We tested a large variety of foods with the ALCAT test and a good 75% of them came back as problematic for me on some level. Next came a very strict elimination diet, which was nearly impossible since I was intolerant to practically everything. My osteopath suggested I try NAET as a way to start clearing some of those allergies so I could eat balanced nutrition again. Through NAET, we found a zillion (almost not an exaggeration!) more things—from foods to chemicals to hormones to neurotransmitters to the my spouse’s DNA—that I was reacting to. The best thing was we could, 1- test all the things! and figure out where the problems were, and then, 2- effectively treat them through the utilisation of kinesiology and acupressure points. This stuff is crazy cool. Since I was basically always in this constant state of reaction (which my body sees as a state of crisis), I could have never really healed without this step. It allowed us to clear out hundreds of things that put me in that reactive state, thus giving my body a chance to heal and fully benefit from all of the other treatment it was getting. Additionally, we were able to narrow down the deep-rooted culprits.
  • YOGA + LOW-IMPACT EXERCISE
    This one is tricky as the timing has to be just right. There was a point where I was so ill that I don’t even think most forms of yoga would have been a good idea. Perhaps with the right type (like yin yoga), it would have been helpful, but you have to know what to look for in a class or instructor. When I did start yoga, I was able to find the perfect studio with a perfect match of instructors. Not-so-ironically, although the recommendation came from my cousin, my massage therapist and then-future acupuncturist were both connected to this studio. The good people are always connected! Doing yoga with these instructors allowed me to be incredibly attentive to my body’s needs and protect all of my weak spots that could cause me to flare, and I was able to reclaim my body as my own after many years of feeling trapped and betrayed by it. Yoga also led me to be able to start some low-impact exercise at home with the T25 video program. This was a HUGE step for me as, 1- it allowed me to become physically stronger (actually, in the best shape of my life, even more so than when I was a competitive gymnast) and, 2- regain hope of significant healing and quality of life. I was VERY hesitant to try a workout program such as this, but also desperately motivated to be well. Since there is a low/no-impact modifier in the program, I followed her entirely and also worked in a few extra rest days as my body dictated. The key to adding in exercise in any chronic illness recovery program is to do it at YOUR pace, LISTEN to your body and stay within its limits. The limits will gradually increase, allowing you to progress, but do not follow the traditional push-push-push concept in fitness. Remember, your goals are different than those of most others working out.
  • SHAKEOLOGY
    At one point, I was taking over 30 pills a day between all of my medications and supplements. Some of these helped a lot, some of them I was just taking with the hope that maybe they were helping, and some probably did more damage than good, as I mentioned above. Nearly two years ago, I was going through a really tough spot and barely had any appetite. My osteopath told me if necessary I had to force myself to eat as nutrition was my medicine. Knowing that most days I could only manage to eat my green smoothie, I started looking for ways to get as much as possible from this one meal. I happened upon Shakeology and was honestly very skeptical to start. I am a huge proponent of whole foods and nutrient density, but also wasn’t so sure that this shake could be as great as they said it was. I researched and researched and finally felt confident enough to try it. Within a week, I was decreasing my medications (including my sleeping med, which was the most difficult one for me to come off of, as I had been trying for years at that point), and within a few months, I was down to only 2 pills. TWO PILLS. FROM THIRTY. This is partially due to the fact that many of the supplements I was using were included in the ingredients of Shakeology, so I no longer needed to purchase and take them separately. Also, I believe all of the good, easy-to-assimilate nutrition in the Shakeology aided significantly in regulating several of my issues and thus eliminated the need for them to be treated with medication. Shakeology has been a daily part of my nutrition nearly every day since, and I am currently in the process of weening off my VERY LAST MEDICATION (throws confetti)!
  • CHANGE IN RELATIONSHIP(S)
    One day I’ll elaborate on this more as I believe it is critical—both as a step toward healing and as a topic of conversation—but I will start by saying: “toxic relationships are toxic.” Just as physical toxins make you sick, so do emotional ones. Have you ever said “so-and-so makes me sick?” There is a reason behind the existence of this phrase. Never underestimate the power of having good, healthy people around you,  nor underestimate the power of getting the toxic ones far away from you. When you are in a toxic relationship, your body is always in a state of defense, your adrenals are always “on” and you are basically in crisis/survival mode. Healing functions stop in this mode and if you are there long enough, your central nervous system can re-wire to all sorts of dysfunctional norms. I started to experience the instant healing effects of being out of this type of toxicity when I would travel, and ultimately this was essential, above every other step, to be being able to be healthy. All of the others were good and necessary, but somewhat blocked and ineffective until I took this (massive and admittedly terrifying) step.
  • MOVED TO FRANCE
    There is a known phenomenon called “the location effect” where some experience instantaneous healing when in a particular geographic location. Often it is documented in a costal location such as Caribbean islands, but for me, I am much better nearly everywhere but Florida, and especially here in Paris/France. Texas is the only place where I have been as ill as Florida and Paris is where I have experienced my maximum health. I won’t pretend to have a perfect explanation for this, but I believe that there are many reasons that I experience better health in France. The food is cleaner, the lifestyle is more mobile and has more regular inclusion of fresh air, the climate is relatively mild (heat and I do NOT do well together), and geographically, I think the magnetic/energetic properties that exist here just make my system happier. Remember, everything that exists is energetic. I don’t say this to sound new-agey; scientifically, everything breaks down to energetic components. I still have bad days in France, but in general my health is DRASTICALLY better just for being here.

So there you have it. The summary of what I did over the years in effort to heal and recover from my fibromyalgia and chronic fatigue. If you have any specific questions, feel free to drop them in the comments below as I’d love to answer them in any way I can! Next time around I’ll talk about the concept of actually healing the body and what that looked like for me.

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chronic illness, healing

The Unbroken Chronicles, Pt 1: don’t be a superhuman

August 3, 2015
the unbroken chronicles: healing from fibromyalgia and chronic fatigue

ESTIMATED READ TIME: 5 MINUTES


Recovering from Chronic Illness: Acknowledge Your Limits and Stay within Them

Read Part 2 Assembling a Healthcare Team and Plan

>>–<<

In the summer of 2002, I had a very bad car accident that initiated the process of becoming chronically ill. 11 years later, I was still struggling with these illnesses (fibromyalgia and chronic fatigue syndrome/ME) and doing everything I could to not give up and keep seeking answers and health. You can read a little more about where I was in May 2013, 11 years from my initial diagnosis, from my post (You are Not) BROKEN. This is a blog series about that journey and what I did along the way that ultimately led be to being healthier than I was pre-diagnosis. DISCLAIMER: Fibromyalgia and chronic fatigue syndrome are very unique and complex illnesses. I am not suggesting that my path to wellness will work for others. I am hoping by this series that I can encourage others who are ill on their own journeys to wellness. Please be sure you have a good doctor and consult with them!


When I had my car accident, I was a 20-year-old-former-competitive-gymnast-all-A-student perfectionist. I didn’t really know how to set limits and I always pushed to live beyond them. I had finished competing as a Level 10 (the highest level before the competitions you see on TV) gymnast two years prior, and had an over-loaded schedule as I was a double degree student. I was socially active, held positions on leadership teams, coached gymnastics and was getting my As. So when I got in my accident, I continued in my typical type-A style: I got my ducks in a row and called my acupuncturist from the scene. I was actually relatively ok at the scene (other than completely unnerved from having to climb out of my car with another one on my roof), but I knew I needed to get on top of treating what had just happened to my body.

This was not my actual accident, but this is what mine looked like. I was the car underneath. Photo credit: nbcmiami.com

This was not my actual accident, but this is what mine looked like. I was the car underneath. Photo credit: nbcmiami.com

Within 2-3 weeks of starting treatment with my acupuncturist, my pain levels had increased significantly and we had more and more to treat. I then contacted one of the best doctors in the world (no, that is NOT an exaggeration) and arranged to see Dr. Larry Nassar that August while he was working at the USA Gymnastics National Championships. I had seen him before for a previous back injury (significantly more acute to start, but never turned chronic) and he worked miracles for my back. When I returned from that trip, I started seeing TWO osteopaths. They treated a bit differently, so I thought I was just giving my body extra healing. My main Osteopath, Dr. Laura Ramipil (also one of the best of the best), finally told me that I had to chose between her and the other. Basically I was OVER-treating. My nervous system was still too freaked out from the accident to even allow my physical injuries to be treated, and I was doing TOO MUCH. Of course I had the best intentions, but I had to take a step back.

So I slowed my roll a bit, and after about 6 months, she was finally able to start treating my tissue. Trauma is no joke! The kicker is no one told me the MOST important part in preventing my acute injuries from turning chronic: STOP. SLOW DOWN. YOU AREN’T A SUPERHUMAN. And even if you have managed to function in superhuman mode in the past, it CAN’T WORK NOW. No one told me was that I needed to slow it down in ALL parts of my life: treatment, physical and mental activity (if you struggle with these illnesses, you know that mental work = physical work). I was still trying to manage everything that had been in my life pre-accident and that was simply more than my body could handle. When you are processing trauma, be it emotional or physical or both, the body just can’t do it all. It needs time. Space. Rest. I didn’t give it any of that. Instead, I ADDED more to my list as I was trying to get well… which quickly amounted to 8–10 appointments a week between acupuncture, massage, osteopathic and physical therapy.

STOP. SLOW DOWN. YOU AREN’T A SUPERHUMAN.

Three years later, I graduated college and began working as a Creative Director, which is a very demanding job. It wasn’t until 2009 when another doctor (Dr. Charles Lapp, one of the leading fibromyalgia/chronic fatigue/me docs in the world) finally told me: “YOU MUST STOP [working] or you will be irrecoverable.” The word irrecoverable to a 28 year-old is pretty scary. And serious. It was finally enough to slow me down. I stopped working for what was supposed to be 6 months. Several years later, I was still ill, even more so, but there were different reasons for that which I’ll get to in another post. There is absolutely NO WAY I would have ever gotten better if I hadn’t slowed down and made rest a priority. There are so many other things I did that were really important, but without this step, none of it would have ever mattered. I had to work hard at not working hard. If you are like me, and many of you are, you are a type-A go-getter that has always done “everything.” You need to stop. Now. Listen to your body and go at it’s pace—as much as possible it’s non artificially created pace (as in if you drink 5 cups of coffee or a take a stimulant med, you are just creating false energy that is allowing you to push your body beyond its limits). That’s the only way.

Next time I’ll talk about the team of doctors I assembled over the years and the treatments that helped me the most.

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growth, health, life

You are Not Broken

August 3, 2015
You are Not Broken

This was originally posted on my graphic design website back in April, 2013. I am in the process of creating a series of posts about how I became “unbroken;” how I healed from my chronic illnesses. But first, I’ll share this one:


Being that I am sitting in a hotel room in Charlotte, NC for my annual visit to my fibromyalgia/chronic fatigue specialist AND that May is Fibromyalgia Awareness Month (what, you hadn’t heard?), I figured I’d do a little blog post about living with this diagnosis.

My journey with fibro/cfs (Fibromyalgia/Chronic Fatigue/Myalgic Encephalopathy) began 11 years ago when I was rear-ended on the way to work. Long story short, I was hit pretty hard and pushed underneath the car in front of me so their back wheels were on my roof. It was terrifying. I drove a little “tupperware car” Saturn Sport Coupe and I had no idea if it’s frame was going to collapse below the weight of the Chevy Malibu that was suddenly imposed upon me. It was definitely one of those moments where you wonder, “Is this how it is going to end?”  I ended up with some pretty intense pain from my injuries, but was fortunate to be able to crawl out the window of my car and walk away.

Fast-forward several years and I had the most bizarre constellation of symptoms. I was still dealing with a decent amount of daily pain in my back and neck, but I was also experiencing migraines 6/7 days of the week. I developed TMJ and my skin became so sensitive it hurt when the wind would blow against it. My eyes would often have difficulty finding focus and depth of field in a large space, and when I got really overwhelmed, they would spasm and rapidly twitch back and forth. I couldn’t sleep at night, and then would fall asleep at work. I never felt like I could get a good night’s sleep, even if I had slept for 8-10 hours. I had difficulty articulating my thoughts and even more difficulty managing multiple tasks/projects at once. My skin would itch, my nose and knees would sometimes go numb, and my hands and feet would always throb and feel swollen in the morning. It hurt to put weight on my feet and felt like I was walking on pins and needles every single morning. I would get so tired that my entire body burned—simple tasks like picking up a glass of water would sometimes make my muscles fatigue as if I had just completed a strenuous workout. And, finally, I had terrible abdominal and chest pain that would sometimes hurt so much I couldn’t stand up straight or take a deep breath (which later I discovered was due to IBS and food sensitivities). Last time I checked, I have battled at least 35 distinct symptoms. Each day was different—some days I would have five symptoms, some days I would have 10, some days I would only have one or two. I never knew when I would be able to get up in the morning or if I was going to make it through the day.

I grew up as a highly competitive gymnast, so I was trained to always push through pain and just work a little harder to achieve anything I set my mind to. The biggest thing I have had to learn through the past decade is that I have to work harder at doing less, not more. I have to constantly ask for help. This is the hardest thing I have ever had to do as it goes against every fiber of my being. It makes me feel broken, incapable, and defeated. It is absolutely impossible to explain to someone who doesn’t have fibromyalgia and chronic fatigue (the two syndromes are typically present together) what it is like to live, er, feel trapped, inside my body.

It would be easy to give up, and honestly, it is often quite tempting. I’ve been on this chronic illness journey for pretty much all of my adult life and it has cost me everything that the world would call stability. I must constantly remind myself that God will not abandon me, thus He must be up to something here. There must be something good that will come out of this. I even have this art, designed by a friend of mine Jim LePage, hanging on my living room wall that reads:

“I will repay you for the years the locusts have eaten.”

I need that reminder. Every. single. day. I also need to remember that I am not broken and I am not past the point of repair. I am simply on a journey, albeit a difficult one. Something more lies ahead. I have made progress over these years. Sometimes it is hard for me to see that, but the indicators are certainly there. On the hardest of days, I cling to those indicators—they give me hope and motivation to keep putting one foot in front of the other.

If you happen to know someone with chronic illness, be it fibromyalgia/chronic fatigue, or something other (often hidden) disability, give them grace. For most of us, our lives feel like they are not our own. We will let you down. We will not carry “our fair share” or “our weight” in most relationships, but I promise you we are carrying weight 24/7. If you happen to suffer from fibro/chronic fatigue (or are in the midst of recovering from an serious injury or trauma), my best advice to you is to give yourself grace. Take time to rest. Then take more time to rest. Surround yourself with supportive people that love you regardless of how well they can understand you or how much you can do for them. And never give up.

You are not broken.