Janet Geddis, aka The Migraine Girl, is one of my favorite migraine bloggers. Born and raised in Georgia, Janet has dealt with both chronic migraines as well as autoimmune disease for more than half her life. In 2011, Janet opened Avid Bookshop, which is a community-focused, independent bookstore located in Atlanta, Georgia. She writes for migraine.com and recently, her phenomenal blog was moved there in its entirety.
As a migraine blogger, I have wanted to branch out to other bloggers whose writings have helped me through my own struggles. Reading Janet's blog helped to motivate me to start my own blog! Hopefully, this is just the first interview of many migraine and spoonie bloggers!
What do you always carry with you in case of a migraine?
I always have my water bottle, a Zomig nasal injection device (for migraines I wake with or ones that approach very rapidly), a triptan pill (Imitrex or naratriptan at the moment), and some Tylenol (which my doctor has me take in conjunction with whatever triptan I take).
What changes (if any) have you made to your daily life because of your migraines?
It's hard to enumerate the changes I've put in place over time. I've been living with migraine for 23 years (though I wasn't diagnosed until 8 years into my struggle). A handful of changes include keeping a very steady sleep schedule, drinking way more water than I used to, and learning to scan every new environment for potential triggers. For instance, when I go to a restaurant, I am careful not to stand too close in line behind a woman with perfume on, and I know not to sit under the ceiling fan (as it will cause a strobe effect if the overhead light is behind it), and I avoid really loud places. Every new place I encounter, I'm on the lookout for potential triggers.
How did you start blogging about living with migraines?
My blog started as an anonymous outlet for me about eleven years ago, and in 2010 I was the first contributor to join migraine.com, which was about to launch at the time.
What is one stereotype about migraines that you wish people knew more about?
I wish people understood that migraine is highly individualized. For instance, I'm not lying when I say I have a migraine but still remain at work, mostly functional. Though many of my attacks do leave me in bed in a dark room, there are others that allow me to maintain a somewhat normal semblance of life. And just as migraine changes in me from attack to attack, it changes from person to person.
When you’re recovering from a migraine, what are your go to foods?
I usually crave salty foods high in carbs. Lately, any kind of potato-based snack has been what I go for as I begin to recover: tater tots, McDonald's fries, and even gnocchi!
What’s the best advice that anyone has given you?
Though I can't remember the eloquent way this advice was put to me, I know it was something about how I need to be less hard on myself and focus on all the amazing things I have done in spite of (and because of!) migraine instead of focusing on all that the disease has stolen from my life.
What are you excited about this year?
I am the very proud owner/founder of Avid Bookshop, a community-based independent bookstore here in Athens, GA. This fall, we will not only celebrate our fifth birthday at our original location but will also be opening a second location of the store. This is a huge feat, and I'm so excited. To be able to do this at all is pretty thrilling, but to have done it despite chronic migraine is really quite amazing to me. Thank goodness for my very supportive friends and family and my absolutely incredible team of booksellers at Avid--thanks to them and our loyal customers, my bookshop business is expanding year by year and I couldn't be happier.
Thank you so much Janet, for letting me interview you! I wish you the best with your second location and with your journey!
Hi everyone! This year, I participated in In The Company of Others, an orientation program that shares experiences from college students to incoming freshman. As I have a not so typical freshman year story, I figured that I should do it and share my experiences. After a week of writing and rewriting our scripts, we performed them. Here's my performance. I will put the text below so you can read it as well. Hope you all enjoy!
Hi,
I’m Ellie and I’m a sophomore.
When
I first think of February 8th, 2016, my mind goes to laughing with
my best friend while watching Hannah Montana at 4 o’clock in the morning. It
seems so normal until you take a step back and look around at our environment.
We’re in a hospital ER room, with white walls and fluorescent lights waiting to
find out whether I had a blood clot in my arm or not. This was 4 days after I
had been in the ER for pain and swelling in my arm and was sent home with a
wrong diagnosis and a dismissal because I was “too young” to get a clot.
Watching TV with my friend, I forgot about the IV digging into my vein, or of
the potential consequences of the test results that I was waiting on, or even
the fact that my parents were frantically trying to find a red-eye from LA to
anywhere close to Hartford so they could come and make sure that I was still
alive and breathing when my dad landed 8 hours later. Watching this TV show
from my childhood about living a double life, I realized that I also live a
double life, not as glamorous as Miley’s, however. I wear two masks; that of a
healthy college student, and that of someone living with a chronic illness-
constantly sick and fatigued.
February 4th, I was taking
notes in my social psychology class and suddenly got this intense burning pain
in my right arm. I figured that it was just from fervishly writing, and there
was only about 15 minutes left and I could probably tough it out. The pain got
worse and worse, and finally I was able to go back to my dorm and call my
parents. I called my doctor at Yale, because Davison couldn’t see me until 3
hours later, and I feared that I had a blood clot. See, I’m at risk for blood
clots because I take birth control to manage my hormones for my menstrual and
non-menstrual migraines. However, when I went to the ER, they blew me off. I
told them my medical history and that I knew I was at risk of clotting. Then, I
was lead to a room for 2 ½ hours, alone while the pain migrated from my right
upper arm to my hand, making the area around my thumb blue and swollen. I could
barely touch my thumb to my index finger. There was no one at the nurse’s
station, and when the doctor finally came in, he dismissed my symptoms. I was
too young to get a clot, it definitely wasn’t a clot, my hand definitely wasn’t
swollen, but they might do an ultrasound “just to make me feel better.” At this
point, I had been there for 3 ½ hours alone, I was tired and I didn’t know what
was going on. So they discharged me with a wrong diagnosis that they all knew
was wrong. 4 days later, I was brushing my teeth, about to go to bed when I
feel a shooting pain in my hand. I knew that the clot was back and much worse
than before. When I called PSAFE, I told them to call an ambulance. I didn’t
want to walk in and be disregarded again. However, the ER doctor saw the note from
that Thursday and refused to do any tests. I had to threaten to go to another
hospital because they said that I would have to wait 5 hours to get an
ultrasound and that they wouldn’t run any other tests. After an hour of
arguing, phone calls and pleading, they finally gave me a CT angiogram with
dye, showing that I did in fact have a clot in the right brachial vein of my
arm. The doctor apologized, saying that she was wrong to dismiss my symptoms and
that she was inspired by how well I advocated for myself. Do you know how
common it is for women to get clots blood on birth control? 3%. 3% of women
develop clots, and I just so happened to be in that 3%.
5
years ago I was diagnosed with chronic, intractable migraines. Chronic meaning
that I had more than 15 headache days per month and intractable meaning that
they couldn’t be stopped by medication. Migraines, contrary to popular belief,
are not “just headaches.” They’re a complex neurological condition that has
many symptoms triggered by various factors. For me, my worst triggers are
bright lights, high sounds, vibrations, gluten, soy and anything with tyramine,
which is most commonly found in aged cheeses and red wine. Which sucks because everyone likes cheese and wine.
Now, Everyone memorizes different
things about their lives, whether it’s lyrics from their favorite song, their
favorite poem or something else that they enjoy and hold onto. For me, it’s my
medical history. I can give you the names of all 10 of my doctors, and yes you
heard that right. I have 10 separate doctors who oversee my medical life and
their office addresses, and that’s not even including the ones who gave up on
me because my case was “too difficult”. I can give you my entire medical
history in under 5 minutes because I’ve gotten used to fast intake meetings
with doctors who did not bother to read the information in my charts, whether
they’re at an ER or a doctor’s office. I can tell you every medication that I
take and have ever taken, including dosages. Today, the number of pills I take
per day is 7. A couple months ago, I was taking 12 a day. This doesn’t include
my abortive medications either, that I take when I have a migraine. The
funniest part of my medical life is that if you put my file in a nursing home
and just changed my age, no one would question it! That’s because I am the
youngest person in the US to have ever been put on an anti-Alzheimer’s drug for
migraines, and up until 3 weeks ago I was also on a blood thinner. I also take
Centrum Silver daily vitamins. My friends joke that I am a Jewish grandma
though, because I love naps and am always prepared for everything. I always have
snacks, aleve, lipstick, band-aids and usually whatever else is needed at that
time.
But
4 words have come to typify my life: “But You Don’t Look Sick.” I don’t look
sick because I don’t tell others how I feel all the time. I use makeup to cover
up the bags under my eyes, and balance my skintone because if you saw how pasty
white bordering on green my face is when I’m feeling badly, you’d ask me if I
was okay. And that’s just the thing. I am okay. I’m okay until I’m not. I can
function decently well with a pain level of 4 out of 10, but I’ve learned how
to fake it and to hide my fatigue, memory and word finding issues. You don’t
what it’s like to lose control of your body until you can’t control it anymore.
I’ll be in class, taking notes and listening, when suddenly I just get this
feeling. I get really tired, like the kind of tired that you get after pulling
two all nighters in row. I start to feel my body go weak, as if I can’t support
my own weight. It suddenly becomes hard to find words, let alone even put
together coherent sentences, making communicating what I’m going through much
more difficult. I start feeling like I’m going to faint. Add together those
feelings with intense nausea and dizziness, with a serving of pounding, intense
pain, and that’s my typical migraine.
I’m
not sure if it’s good or bad that I’ve gotten so good at hiding my symptoms.
Yeah, I can get to more classes and appear like I’m a functioning human being,
but at what cost? In the chronic illness community, there is a term called
“spoon theory”, and it’s used to explain why we become so easily fatigued.
I’m tired all the time, even everyday actions
like taking a shower become something that takes monumental effort. In a day,
there are certain things that most people do, like showering, doing dishes,
getting dressed and going to classes. Spoon theory explains that each activity
uses up a certain amount of spoons, of which you only have a certain number per
day, which I’ll say is about 10. There will be some days where 10 spoons will
be enough, but other days when you come up short and can’t do certain
activities because you don’t have enough spoons left. See, it became necessary
to create a theory in order to talk to non-ill people about our illnesses.
That’s because people don’t like hearing about invisible issues. In their eyes,
I don’t look sick, therefore I can do everything that an able-bodied person
can. There’s a certain shame that’s associated with having an illness, be it
mental or medical. I used to be scared to tell people about my migraines,
because I thought that they would not want to be my friend if they found out
this deep dark alternate person that I become when I have a migraine. It’s true
though, I do have a different persona when I migraine. One of my exes called it
“Ellie’s world is ending” attitude because everything becomes extremely
negative and depressing and because of the pain I can’t think or rationalize
anything. I get stuck in these anxious spirals that just add onto the physical
pain that I already experience. I don’t usually let anyone see me. Even my
family rarely sees me during the worst parts of a migraine. When I’m starting
new relationships, I don’t trust easily. I may tell the person about my
migraines, but just the bare minimum. Not the fact that I spent my junior and
senior years of high school visiting the Outpatient Pain Center at Ceders-Sinai
3-4 times a week, instead of being in class. I don’t tell them that I lost
almost all physical ability for almost two years, that even washing the dishes
was enough to force me to get back into bed for 4 hours just to recover and be
able to sit up again. I don’t tell them about the nights that I can’t sleep and
how I cry at 2 o’clock in the morning because sometimes, dealing with this
illness is too much to handle. I often feel like I’m burdening others if I ever
need help, and this includes romantic partners, and no matter how much that
they try and assure me that they want to help, it’s hard to believe them. I’ve
been in too many situations where their actions don’t match up to their words.
See, I’m difficult. High-maintenance. I have numerous food allergies making it
difficult to eat out sometimes. I used to not be able to go to the movie
theatre because the sound and lights would trigger migraines for me. I can’t
keep all of the plans that I make, because I never know when I’ll be
incapacitated. I live in the unknown. It’s a disturbing place for some people,
but recently I began to appreciate it because that is my normal. Every morning
starts with the question of, “Can I get out of bed this morning?” or am I in
too much pain to move. I live my life with contingency plans carefully thought
out, so when something happens, I already have a plan of action and can deal
with it. Living with an invisible, chronic illness isn’t fun. But not having
people to talk about it with makes it so much worse. It is already an
isolating, solitary experience. So, if someone you know who has an invisible
and/or chronic illness, I’m asking that you listen to them a little bit more
carefully and try to see it through their eyes. The people that have done that
for me are some of the most important people in my life, and they have helped
me be able to actually live my life instead of living in fear of my migraines. Thank you.
I've had some of the best weeks of my summer in the last 3 weeks. I finished an amazing internship, visited friends, made spontaneous plans, and even was a tourist in my own city with friends. I was surprised by the amount of energy I had, and decided to try and use it as much as I could. Yet, as spoonies with a limited amount of spoons, how do we know when to stop? I know that there's been days that I've totally overdone it and have paid the price the next day. Here's a couple of my tips to make sure that you're getting the most out of your activities but also taking care of your health.
1. Plan out your day ahead of time
If you know that certain activities tire you out, try and cut the amount of activities you do. For example, driving tires me out. Instead of trying to drive all around my city and do things all over, I planned a couple days of activities that were all centered around the same area, allowing me to go do fun things, but not totally sap all of my energy.
2. It's okay to say no.
I know that when I'm with friends, I won't always voice how tired I'm feeling, fearing that I was going to ruin the day or the plans that we had set out. Here's a small bit of my wisdom- it's okay to say that you need to rest. Your friends/family/significant other will understand why you need to take a break. I know, it's easier said than done. It never feels good to have to cancel or cut plans short, but honestly, it's better to keep yourself healthy and take the time to recharge so that you CAN do more activities the next day. It's all about balance.
3. Contingency plans are life-savers.
So here's a real-life situation that I've had; I'm out with friends in Santa Monica, we're doing a beach day after going to a museum. I'd already been feeling exhausted due to the heat and all of the walking, and wasn't sure how much longer I would last. So, after spending some time at the beach and grabbing dinner, I opted to take an uber home and recharge while my friends enjoyed the walk from Santa Monica to Venice. Having multiple options, like public transportation or mapping out all of the what-ifs, allows you to actually enjoy yourself even if you're a bit worried about your energy or health. I know that when I'm out, I am always worried about getting a migraine and not being able to get home or even be functional. Making plans with multiple options allows me to go out and do fun things without having to worry about making split second decisions. I know that if I am with friends and I don't feel well or can't handle an environment, I have already planned a couple options of how to get home or somewhere comfortable safely.
Furthermore, sharing your contingency plan with your family and friends makes it easier for them to react and help you when you get sick. I have trouble talking and making sentences when I get migraines, so trying to make plans is extremely frustrating and difficult. However, if I've gone through the plans with them before, they can easily help me do what I need to do, whether it's taking my meds or finding a taxi or uber to get home.
4. Be Prepared
I never go anywhere without my rescue meds. Ever. If I go to the gas station down the street, you know that I'm going to have my meds with me. You never know where or when you're going to get a migraine, so why not be prepared? My friends joke that I'm a grandma, because I also have 3 million things in my purse. Need a bandaid? Need lipstick? I've got 5 different shades. I also carry Aleve and tylenol with me at all times. As a reminder, never give anyone your prescription drugs because those are only for YOU. Furthermore, always have earplugs or noise cancelling headphones. ALWAYS. For years I couldn't see movies in theaters because they were too loud and I would trigger from them. Now, I always have earplugs, and it's allowed me to go to concerts, movies and any other activity that I want because I don't need to be worried about not being able to handle the sound. I never know when I'm going to be affected, so I over-prepare, and this has saved me so many times and allowed me to continue to have fun.
5. Have Fun!
Not having enough spoons sucks. Not being able to get out of bed is a terrible feeling. Try and do small things when you can, even if it's having a friend over to watch a movie, or going out to lunch. You are the only one who knows how many spoons you have and how activities affect you. Do things that make you happy, because even if it's a small activity, you can feel happy and feel like you have fun, even if you need to spend some time to recharge.
Find what works for you and stick with it. You are the only one who knows how your body is feeling. Even though it feels shameful and embarrassing, it's okay to say no. In fact, I know that when I say no, I usually end up feeling better and am able to reschedule and be fully present then. There's nothing fun about feeling like a zombie when you're at a museum!
What do you do to deal with your lack of spoons? Comment below and let me know what works for you!
When I first got sick, I was ashamed to talk about my illness. It was hard for me to ask for help, and I felt like I was inconveniencing everyone around me. It's been about 5 years since I first started getting migraines, about 3 years since they became chronic. I used to apologize for having to ask for accommodations, or for substituting something that I can't eat at a restaurant. Maybe I'm just growing up, but I've realized that I needed to stop apologizing. I never asked to have a chronic illness. I never wanted to live my life with the uncertainty that I may not be able to make plans or live my life the way that I want to. Yet that's what happens with chronic illnesses- no one asks for it, but it's something that we have to learn how to deal with. It's like riding a bike- except for the fact that your bike has a flat front tire making it impossible to control. Every step of the way is bumpy, even when your life seems to be sailing a little bit smoother.
So why was I apologizing for something that I didn't even have control of? First of all, I'm a chronic apologizer. I even apologize to inanimate objects when I bump into them. "Sorry" became a filler word for me. When asking a question, I would start with "Sorry," instead of "Excuse me" or the question itself. "Sorry" became a word synonymous with distancing myself from my illness, adding shame to requests that were perfectly reasonable.
Once I realized what I was doing, it was easy to change my attitude. There is no reason why I should be ashamed or embarrassed about my illness. It is as much a part of me as my passions and interests. I always felt that I had to apologize because I was "different." I said "sorry" because my case was difficult and seemed to have no concrete, long-term solutions. I had to learn how to deal with doctors, insurance companies, and medication side effects for a misunderstood illness that still needs a great amount of research to be fully understood. I was never a textbook case, nor will I probable ever be (ex. my blood clot). Now, I don't say "sorry." I talk to doctors about my case calmly and clearly, because I have nothing to be afraid of or "sorry" about. I've already been through the worst.
By not saying "sorry," I'm taking control of my illness. To say it clearly, I'm living my life instead of apologizing for letting my chronic migraines make my life decisions. Chronic migraines don't define me. They don't define my passions, my hopes and my dreams. Rather, they've helped me to see how strong and resilient I am, what my body has endured and how I've come out okay. If I never got sick, I would not be doing what I am today. I would not be writing this blog, or working to raise awareness about chronic and invisible illnesses. So no, I'm not sorry. Even though my life has been a rollercoaster with no end in sight, it's made me into who I am. I am a headstrong, passionate girl who doesn't eat gluten, tyramine or soy and is set on changing the world.
I can't really remember the spring semester of my junior year of high school. No, really, I can't. The last memory I really have is watching Annie Hall on New Years Eve, and then my next clear memory is my junior prom in May where I went home directly after the dance. There's a couple sparse memories here and there, but the rest of it is pretty grey and cloudy. Over July Fourth weekend, I saw Finding Dory with my family. There was something about Dory that reminded me of how I felt when I was very sick. There were multiple periods of time where I struggled to read, write and focus. As a consequence, my memory was heavily affected to the point that I couldn't recall information. Sometimes, I would be talking to someone and forget what I was talking about mid-sentence. Like Dory, no one really understood what was going on or how to help me because I couldn't remember or finish my thoughts. Sometimes I would be reduced to tears trying to find words just to make a simple sentence. It was frustrating, confusing and scary. I never realized how much I took my ability to talk, read and write for granted until it became almost impossible. As much as I tried to keep going, I felt incapacitated and discouraged. Neurologists did full work-ups, sending me through test after test finding nothing as to why this was happening to me. I was sent to doctor after doctor trying to figure out why my migraines were causing me to lose all quality of life. When I was in school, I would try and keep quiet so I wouldn't be called on in class and have to talk in front of others. Talking became a chore, something that I dreaded doing in front of people who didn't know the medical details of what I was going through.To cope, I became increasingly better at ways to find words when I would be unable to find the right word. I would keep on throwing out words until I found the right one, or my friends and family got the gist and filled it in. As someone who loves words, (I talk and write A LOT), losing my speech and memory made me feel like I had lost my life to my illness. Memory loss is scary. It's frustrating and unnerving. Imagine a day where right after you do something, you forget what you just did. Even just creating simple lists becomes difficult. For me, I could encode new information (basically make memories) but I could not retrieve them from my memory. Studying for a test was infuriating because I could learn the information, but then forget it right after I said it. I honestly thought that my dreams of becoming a diplomat or running my own business were gone. Now, I know that I can achieve anything that I put my mind to. But then, my world as I knew it was gone. The Spring semester of my senior year, I was put on an anti-Alzheimers drug called Namenda (generic name Memantine). It sounded crazy at the time, a 17 year old girl who didn't have Alzheimers on an Alzheimers drug. However, this drug made it possible for me to start to remember, encode and retrieve information. Namenda contained glutamate, which, through receptors, aids in memory formation, neural communication and learning. This off-label usage of Namenda, first used in a study by Dr. Andy Charles, allowed me to get part of my life back. While I still have migraines, my ability to remember and encode is less impaired than it was almost two years ago. Losing my memory and my words has made me a stronger person. It also made me thankful that I am able to speak, read and write again. Just like Dory, I kept swimming and finding my own way to function in order to live my life the best that I could.
I am a patient advocate, blogger, and health policy professional living in Washington, D.C. I’ve been living with chronic migraine for the last 8 years since the age of 15. I started writing about my life as a student and young adult living with migraine on my blog, Chronic Migraine Ellie, over 4 years ago. I write about topics like understanding migraine and learning how to be a patient advocate, reducing stigma around migraine, mental health and invisible disabilities, and navigating personal and professional relationships while living with chronic illness.
Disclaimer
**I am not a medical professional nor claim to be one. Any medical advice or decisions should be discussed with your doctor. I am only writing about my own experiences and information that I have learned pertaining to my own medical history.**
