Becoming the CEO of my health and body
I just want to kick this off by saying to anyone who suffers from chronic pain or any other condition, I so feel you and I’m here for you. Don’t feel like you are fighting this battle in isolation.
When I left my job in September of 2019, I had idealist fantasies about all of my stress and extra cumulated weight gain just melting off and feeling healthier and more energized than I ever had before. I pictured captioning a future Insta post with the old cliché “I’m 34-years-old and in the best shape of my life!” caption. Instead, the opposite happened. By the first of the year in January 2020, my health started rapidly declining.
I had gotten on a great antidepressant that literally changed my life a few months earlier, but I was perplexed at why I still felt tired all the time. Not only was I still tired, but it seemed like the tiredness and exhaustion was getting worse. I’d wake up around 6ish and usually linger in bed while I read the news, do a crossword puzzle, check social and emails and around 7:30 I’d get up and give our dog breakfast and by 8:30 a.m. I’d be ready for a nap. Usually by 1 p.m. or so, I’d feel the need to take another nap. I was down for the count and in bed by 9:30 p.m. every night. And those were what I considered “the good days” at the time.
There were days when I felt such a deep tiredness in my bones that I wouldn’t even have the energy to get out of bed
There were other days when I felt such a deep tiredness in my bones that I wouldn’t even have the energy to get out of bed or shower or have a conversation. Those days were increasing and that scared me. Especially because I had always associated my failure to launch days with my depression, but now that I had that in balance and not experiencing any other depressive symptoms, why was I still so damn tired?
In addition to this, my migraines got out of control. I was essentially getting a migraine every 3 days. Migraines are still greatly a mystery and they are different for everyone. A little background – I do not see auras or get sensitive to light and sound. I get a pain that starts in one side of my neck and that pain grows into the side of my head and face and eventually down one whole side of my body into my fingertips and toes. When I get migraines it feels like muscles and nerves are tightening so much they are trying to strangle me from the inside, like a rubber band ready to snap. I get knots, my joints feel like they’re on fire and hands and feet and elbows start popping. Eventually my muscles will droop and the vomiting will begin.
Untreated, these migraines can last days and have ended with me trying to smash my head into a wall.
Untreated, these migraines can last days and have ended with me trying to smash my head into a wall, visits to the ER, urgent care and multiple specialists. Finally we discovered that triptans, specifically sumatriptan is the only thing that works for me. If I take it at onset I can usually be clear of the migraine within an hour. That is unless it’s my Super Migraine. I usually get one horrible migraine during June or July, right around monsoon time in Arizona and nothing can treat it and I just have to ride it out. But lately my meds had become less effective and I felt like I pretty much just always had a dull migraine or was on the brink of getting of one.
I decided that we should try cutting out processed foods and follow the Mediterranean diet to add in as much anti-inflammatory nutrients as possible. No change. We took it a step further and thought that perhaps I had a gluten intolerance so we experimented with cutting out gluten. No change. I thought exercise would be beneficial so I tried implementing a daily regimen. At first I thought my body was just weaker from not working out for an extended period of time when I was focused on my job, but as I had to drop the weights from 12 pounds, to 10 pounds, to 8 pounds to 5 pounds and then eventually cut out weight training all together because it would utterly exhaust my body and trigger a migraine, I knew something was wrong. I could barely get through 30-minute medium-level workouts.
Time to listen to my body.
It is heartbreaking to feel like you are a hostage in your own body and you don’t understand what its demands are.
Eventually I decided that maybe I needed to take a different approach and just listen to my body. I gave in to what it was asking for. Sleep. So I slept and I slept and slept, slept, slept, but I never felt refreshed or better. I began doing research about Chronic Fatigue Syndrome, Thyroid cancer since it runs in my family, autoimmune disorders, hormonal disorders and planning for the worst.
For those that have been through something similar, it is heartbreaking to feel like you are a hostage in your own body and you don’t understand what its demands are. I was losing my quality of life – cancelling plans constantly, leaving things early, unable to be active or attentive. The amount of brain fog I had was ridiculous. I remember even saying to my husband that I was worried I was getting more stupid with age because it felt like I couldn’t retain knowledge anymore or remember things.
We decided to focus on one thing at a time and I did some research and found a neurologist that had great reviews and was one of the few in Arizona that prescribed some of the new medications recently prescribed by the FDA to specifically treat migraine. Up until very recent, all migraine treatments were originally developed to treat something else like seizures or blood pressure, etc. This was a big deal.
I want to highlight why this was a hard step for me to take both personally and from a logistical perspective. I have kidney disease called Polycystic Kidney Disease. I was born with it and it was genetically based down from my grandmother to my father to me. I watched my grandmother suffer from this for decades and spend a huge chunk of her life in doctors offices and hospitals and dialysis centers. It was terrifying and sad to me to look at this as my future. Then my dad started declining in his fifties. He was a difficult match and waited on the transplant list for 3 years and had to do home dialysis. It was devastating to watch my strong, capable dad have to change his whole life to yield to this disease. So I tend to be a bit doctor adverse. Not because I don’t find them valuable, but because while I’m young and healthy I want to spend as little time as possible in their presence as possible.
Unfortunately, this stubbornness has cost me. Because of the gaps and inconsistent care, I couldn’t get into a specialist at Mayo or to see a few of the other top practitioners, but I felt optimistic about getting an appointment at Foothills Neurology. There was a TON of paperwork I had to fill out prior to my visit and of course I cried while there as she told me that my migraines had become unmanageable. She explained that there’s a period before the onset of your migraine where your body wants to shut down and sleep so it can focus on fighting this upcoming migraine war and there’s a post period of recovery, so basically I was living in a constant state of chronic migraine.
My insurance will only allow 9 pills a month and I was far exceeding that allotment and this was also causing me intense stress and anxiety and to resort to other things to just dull the pain like muscle relaxers. It was a vicious and ineffective cycle that was draining my body.
Finally, she said the words I had been praying for. She wanted to try me on of the new injections specifically for migraine called Emgality which is very similar to Aimovig. I was so happy, I felt giddy! They administered two shots in the office and if approved, those being the keywords because you have get approved for this treatment by your insurance, I would administer one a month myself at home in my arm. We also had to make sure the medication didn’t interact with another new drug I was taking for my kidney disease called Jynarque.
Blessedly, I was approved and both of these treatments I’m excited to say have little to not side effects. The Jynarque just makes me INSANELY thirsty. I seriously am probably the most hydrated person you will ever know and I probably pee more than any person you will ever know. I’ve had to make adjustments to my life like making sure I always have water readily accessible, making sure I have my trusty Luggable Loo (for those that don’t know, it’s a portable toilet and it has saved my butt – literally – on more than one occasion) with me on long car trips, I have to get monthly blood tests done to monitor my kidney and liver function and always being aware of where bathrooms are and that I can get to them without hassle at events and outings. Totally worth it for the possibility that I may never have to go on dialysis if the pill works as it should. Anyway, the shot hurt like hell. Seriously. Worse than of my tattoos. But, if it decreased my migraines, again, totally worth it.
Within two weeks my migraines got cut down by half. Within a month it was more than half and my energy started coming back, the tiredness dissipated and by the second month I have migraine pills leftover in my bottle, all that brain fog cleared and I feel sharp and focused and I’m proud to say I have many napless days now and have started reintroducing exercise back into my life.
I still have to honor my body and my triggers. I’ve permanently given up weight training except for some light work with 5-pound weights because it still instigates an attack as well as high impact cardio like plyometrics. I’ve been falling in love with yoga, barre and dance as well as sneaking in just mini bursts of cardio sessions for like 5 minutes a day. I also walk for 30 minutes almost every day. When the weather is good, I get a nature fix and extra bonding time with my boys, but when it’s hot I just turn on Golden Girls and walk around my living room.
I’ve also permanently given up alcohol as that is a massive trigger for migraines, along with ramen (this one makes me super sad) and watch my salt intake. I sleep with the weirdest pillow you will ever see that has an indent to provide neck support and I also do weekly stretching to help with keeping my muscles loose. And I still honor what my body tells me. If I ever get that urge to sleep, I cancel and clear everything for the day and let it do its work to prep or heal from a migraine. I don’t fight it anymore.
The other big adjustment is that I’m finally taking responsibility for the conditions that I already live with. I’m seeing my migraine specialist one every few months now, my psychiatrist once ever few months, my kidney doctor once a month for blood/urine tests and annually for a full checkup. I’ve made these a priority and schedule them with as much importance as any other high value meeting or event in my life. I’ve stopped putting my health on the backburner and have now made it front and center to provide preventive, holistic care.
This whole experience has really taught me to be in tune with my body’s health and energy and start making choices to live in a way that makes sense for me. I know a big part of my migraine pattern has to do with my hormonal cycle and I read a great book called ‘In the Flo’ that discusses how important it is to align our schedule with our inner feminine cycles.
As much as possible, I try to preemptively schedule meetings, speaking engagements, networking events, etc during days I know I’m prone to be feeling energetic and sociable based on my cycle. For days that I know I’ll probably be feeling a little low, perhaps more inner-focused and intuitive, I schedule time for reflection, reviews, writing and goal-setting. And I take it all day-by-day now. If I need a rest day, I allow myself to truly rest and restore trusting in the fact that probably tomorrow or the next day I’ll be so fully rejuvenated that I can as much done in one day that most people do in 3 days. That’s just how I flow!
It’s a much more healthy approach to my schedule. And I’ve gotten a lot better at communicating to friends and family members where I’m at and what I need for the moment we’re in. All the people in my life who truly love me are completely understanding and supportive. I used to make excuses all the time, but now I just say, “I have a migraine today or I’m feeling really exhausted today, but you are important to me so can we reschedule this for when I can be fully present.” I hope that you have people in your life that love and care about you enough to respect that. Having a good support system is important. My husband, parents and three of my best friends were always standing strong beside me every single daunting and challenging step of the way.
And so I’ll say again that if you don’t have that, hi, I’m here for you.
P.S. Oh, and I like to give credit where credit is due. I didn’t come up with this idea of being a CEO of your own health. I saw a very strong, candid woman speak at Alt Summit in March and she shared her personal journey of becoming the CEO of her health and she was the inspiration behind this whole transformation. So thank you, Rachel Matos for bravely speaking about The Chronic Entrepreneur.
Love, love, Love! Thank you so much for sharing this mELISSA. mIGRAINES ARE AWFUL. tHEY ARE SO SNEAKY AND THEY ROB yOU OF YOUR LIFE. i GET WHERE YOU’RE COMING FROM. oTHER cHRONIC MALADIES SUCK ASS, TOO, PARTLY FOR WHAT THEY DO TO US IN THE MOMENT BUT ALSO FOR THE STORIES WE TELL OURSELVES ABOUT THEM. tHINGS LIKE, “a STRONGER PERSON WOULD BE ABLE TO OVERCOME THIS.” aND, “wHAT ARE YOU WHINING ABOUT – OTHER PEOPLE HAVE REAL PROBLEMS. sUCK IT UP!” YOUR HONESTY TOUCHED ME AND YOUR ORIGINAL VOICE IS TO BE CHERISHED. wRITE ON, SIS!