Images of an Invisible Illness 2016
A migraine feels likes a million pokers in my eye. It feels like there’s a cactus in my brain. It feels like I’ve completely lost, not only my direction, but my mind. It’s extremely hard to express these feelings to someone who has never had a migraine.
When I go downhill, at least once a day in varying severities, you can look at my face and see the pain. I call it melty face. Sleep is essential, even when you’re at a tame bachelorette party and have to find respite in the limo.
I can sometimes hide melty face, but those who know me well, call me out and force me to take care of myself., like Dr. Silberstein.
Prescription meds, preventatives, abortives and over-the-counter supplements. I have a drawer full of bottles that I currently use or have tried in the past. The trial and error process is grueling, but necessary. The standard rule is to try a new drug therapy for at least 3 months before deciding whether it works for you or not (unless you have side effects, then call your doctor immediately). If you have a collection of meds that need to be disposed of, find a Drug Take-Back event.
Migraines come with many co-morbidities. When a new symptom arises, I know testing is needed to get to the bottom of it. In the past year, I’ve had a camera placed in my esophagus (Bravo procedure) to monitor acid reflux and gastroesophageal reflux. Then I’ve had two MRIs and a sleep study to investigate severe muscle twitching issues that turned out to be restless leg syndrome (RLS) and periodic limb movement disorder (PLMD). I also went back to acupuncture to seek relief, which unfortunately did not change my symptoms.
I sometimes think I should wear a handicap sticker on my shirt. Maybe then people wouldn’t question the severity of my condition. Chronic migraine is an invisible illness, but a handicap sign isn’t. I could look perfectly normal but I need help. I lose words, I can’t carry groceries, I get turned around. I feel like I have to apologize to perfect strangers when I need extra accommodations. A sticker might stop annoying questions.
I was approved for Social Security Disability benefits in 2014. After two years on SSDI, I qualified for Medicare. It was kind of funny and kind of sad at the same time. I had health insurance during that gap through the Affordable Care Act, which was difficult enough to figure out and then Medicare was a nightmare to understand. But this program helps millions who couldn’t afford insurance on their own because of their disability.
Migraines are debilitating, they can come out of nowhere to ruin your plans. They can completely change your lifestyle. They can end relationships. Yet, it is so hard to inform others about their impact on your life. Here are some sad statistics that you can use when you share your story with others.
- There are 36 million Americans who have migraine. 4% of those have chronic migraine (15 or more headache/ migraine days per month).
- Depression and anxiety are about twice as common in people who have migraine compared with those who do not.
- Migraine causes Americans to miss 113 million work days per year.
- Headache disorders are responsible for nine percent of all US lost labor productivity.
- Most med students get only 4 hours education on ALL headache disorders.
- There are NO treatments originally developed for cluster headaches.
- Migraine is no longer considered vascular; it's neurological.
- World Health Org says severe migraine attacks as debilitating as quadriplegia.
- The average direct cost per year for migraine-related medical treatment per chronic migraine sufferer in the US is over $4,000.
I’ve written a lot about going to “Headache Camp.” It’s a 5-day in-patient stay at the Jefferson Headache Clinic in Philadelphia. I get a 24/7 IV infusion of a drug called ketamine. I’m averaging 2 trips a year. It helps to “reset” my brain. I feel the benefits of this therapy for about 4-6 months afterwards. The migraines aren’t gone, but they are less severe and I am more productive. Even asleep, you can see the pain on my face. To stay strong, I do some yoga while in the hospital and I find it helps me to recover more quickly.
If you don’t know, Migraine.com was the first community based support group launched by our parent company, Health Union. Today, we also have MultipleSclerosis.net, RheumatoidArthritis.net, Type2Diabetes.com, HepatitisC.net, COPD.net, ChrohnsDisease.com, Asthma.net, IrritableBowelSyndrome.net, and PlaquePsoriasis.net. And there are many more in the pipeline. The team of writers, moderators and tech support has grown tremendously. Those not working at headquarters always feel very supported by those working specifically on Migraine.com. Health Union has grown so fast, they just moved into a new space. I’ve had the pleasure of visiting both offices when I go to Philly for a doctor visit. I wanted to share the amazing art that adorns the office walls.
On the beach, at a wedding, on some crazy cliffs in New Mexico…I’ll do what my body tells me it needs. Yoga can help reset my energy. I have goals of learning new poses and even trying acrobatic yoga with my boyfriend.
We have all “Faked It.” Not faked being sick, but faked being well. For once you just want to have a good time with your friends, dress up, go to a nice dinner. You prepare all day to have the energy to get ready and go out for a few hours. But it’s not always so simple. On the left, I retreated to the bathroom during a women’s health gala so I could pull it together. On the right, I was trying to have a great night in Mexico, but it was cut short. I may look fine on the outside, but on this inside this is how my brain feels the majority of the time.
Patient advocacy work has become a passion. One of the events I attend is Headache on the Hill. Migraine patients from all over the US come to stomp on Capitol Hill to educate their representatives on the seriousness of migraine and how they can help reallocate NIH funding dollars to boost research for this neurological disease. Here I’m pictured with Sen. Tim Kaine of VA, with my fellow stompers Dr. Daugherty and Dr. Chehrenama, in front of Congresswoman Capito’s office and with Sen. Chuck Schumer and another great advocate Michael Hernandez and his mother Alicia.
I attended the American Headache Society’s (AHS) 58th Annual Conference in June. The brightest minds come together to share research, report on clinical trials and brainstorm on the next big thing. Through this experience, I got to meet 3 fellow Migraine.com writers, Kerrie Smyres, Anna Eidt and Tammy Rome. I also heard an amazing talk about managing life as a parent with migraine, given by my DC headache specialist, Dr. Jessica Ailani. Sunday was family and patient day supported by the American Headache and Migraine Association (AHMA).
Migraine Idaho had a logo design contest for their event Haturday for Headaches. The idea is that people would buy the hats and then wear them on a certain day and share on social media. My brother, being an amazing graphic art designer, won the contest with his “Fightin’ Brains” logo. Here, my boyfriend and I are sporting our caps!
I did the craziest thing this year. I moved from Washington, DC to Santa Monica, CA. The opportunity fell into our laps and we couldn’t say no. My boyfriend is from the West Coast and we had talked about this move as a possibility some day, but it came sooner than we thought. In June 2016 I became a California resident and I’m so excited to make new memories here. I know that I have a whole team of family and friends back in DC that are supporting us from afar in this crazy new journey, but I miss them terribly. The amazing sunsets and perfect weather helps ease the pain sometimes.
I try to leave my boyfriend of 6 years out of a lot of my writing to protect his privacy. But to not acknowledge him seems weird. We decided on a pseudonym for him. Let’s call him “Archer.” Nine months into dating, my migraines became chronic. Without his support, I couldn’t do half of what I am capable of doing today. I know he deals with “Compassion Fatigue,” but we’re good about talking through it and finding healthy ways to make sure we both still have a life although mine can be very limiting. He’s my biggest cheerleader and my partner in crime.
My personal mantra is “Living a fulfilled life while managing chronic migraines.” Even though I may be in pain or know that the next day I’m going to pay for the fun I’m having today, it’s worth it just to feel alive. This past year, we took an extended vacation in Mexico, I got to go horseback riding, I had a blast at a bachelorette party in Napa, I got to take my brother sea-kayaking (of course we capsized into the chilly Pacific in December), I enjoyed the Cherry Blossoms in DC and I got to feed a giraffe, my spirit animal. While these adventures are all impacted by my migraines, creating these memories is crucial in making me feel normal.
“Today I made up my mind I will do whatever it takes even if it kills me. I will die for what I love.” I love street art with meaning!
So true. I often feel like I have an 80 year-old body.
I have a love for singing, which fell by the wayside once I became sick. But recently, I found my voice again.
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