Help Tracy raise money

I’ve been battling migraine disease for 6 years, ever since I was hospitalized for a rare neuro immune disease called ADEM.   I actually feel lucky to know the WHY behind my pain, because there are so many people out there who will never know why they have this disease.   I suffered brain damage as a result of ADEM, which altered the way I experience pain.  Forever.   Migraine is a complex neurological disease of which there IS NO CURE.  It’s not just ‘a really bad headache’.   Sometimes it’s the worst hangover you’ve ever had, without any of the fun.  Some people never experience head pain at all during a migraine attack, instead they go through fun things like losing sensation in parts of their body, or worse, losing sight.  (take a second to think of how scary that can be- are you going to be in the car with your kids the next time a migraine strikes?) Common concurrent symptoms include nausea and sensitivity to light and sound.   The nausea is no joke.  But I have cancer grade pills to help with that.  A common misconception is that people believe you ‘get a Migraine’.  No, you have migraine disease.  It is there FOREVER.   

My journey to being able to function after ADEM has included over 30 migraine medications, in various combinations, over the years.   And while I’m so grateful for all of my neurologists at the Headache Center, a large part of my recovery has been through diet, supplements and exercise, which I was left to investigate on my own.  I’ve seen several holistic doctors who led me to focus on gut health, supplementing my body with minerals and eliminating certain foods from my diet.  I cannot stress how much effort and money I’ve had to expend to get to the point where I am now, which is why I’m passionate about raising money for research into this disease.   

I want to share what living with migraine looks like because there is a huge misconception about what it is.  Like most migraineurs, I’ve experienced a lot of bias, judgement and outright discrimination.  Migraine is a disability.  Yes.  A disability.   

When I left the hospital after ADEM I was completely blind, I couldn’t bathroom for myself and I could barely walk.  I have permanent nerve damage in my eyes.  Those things were fine.  What wasn’t fine was the migraine I had that NEVER WENT AWAY.  I felt like my head was literally going to explode.   Thankfully I was on some heavy duty antidepressants because I’m sure I would have killed myself.   I ate advil and tylenol like candy because I didn’t have anything else (this actually made things worse)  I wasn’t able to get into the Headache Center for about 6 months.  At that time my vision started slowly coming back and that gave me some hope.  

Finding the right combination of meds to be able to function as a normal human being took A LONG TIME.  Some medications actually made things worse.  When my vision returned I wanted to go back to work because I just wanted my life to be ‘normal’ again.  That was the biggest mistake of my life.  I had no business going back to work, which is full of things that constantly trigger migraines - fluorescent lights, computer screens, people wearing cologne and perfume.   And I was in so much pain all of the time.  I would try to go have a drink after work and my face would start twitching from the alcohol and my head would POUND.  A coworker actually made fun of me.   I realized I was never going to be my old self and that was hard.  

Fast forward to today.   If you just met me you would never know that I have a disability.  You wouldn’t know that I take 13 pills a day or inject myself with medication once a month.  That my migraine brain craves consistency and that means I go to bed at the same time every night (8:30) and I wake up every day at 5:15am.  And when I don’t do that I will surely have a migraine the next day.  I can’t eat pizza or anything with fresh yeast, no aged cheeses, nothing fermented.  All of those things are migraine triggers.  I have to cancel plans often because I feel sick, or it’s the day after the migraine and I’m feeling ‘hungover’ from the migraine meds.   When I come home from work, most days I have nothing left for my family, I’m simply exhausted (a fun side effect of ADEM).  A lot of days I don’t get to be a mom and I am so thankful for my husband and my family who continue to support me through all of this.   I have 1-4 knock out migraine days a month, but most of the time I’m living with head pain to some degree.   I can’t take any one medication more than 3 days a week so there is always the fear of running out of meds to take.  When that happens I go to the hospital for 3 days.   My anxiety is constant.  How am I going to make it through the work day today if I get a migraine?  Who am I going to let down this week because I have to cancel plans?  I have so many things I want to accomplish this weekend… ugggggg please don’t let me get a migraine on the only two days I have for myself.   

I continue to fight for the things that help me lead a ‘normal ish’ life, like the ability to work from home two days a week.   Despite my doctors note that migraine is a permanent disability, an employer told me I’d have to get a new letter signed every 3 months saying I still have migraine.  I asked them if anyone in the company was in a wheel chair and whether those folks had to get a letter saying they still couldn’t walk every three months. It’s this kind of discrimination that makes my blood boil.   I am so sick of the ignorance and bias surrounding this disease…. which is why I decided to sign up for this 5k.   Because if I don’t get my frustration out in some way I would have to slap people who say stupid shit to me on the regular.   

If you have migraine, or know someone who lives in constant pain, I hope you will consider donating to this cause.  Migraine is an invisible disease and you never know what someone might be dealing with on the inside.   Thanks for reading.