This all started with an idea. Black and white. How everyone around me saw this world that I must be living in because of my chronic migraine.
But, as I lay here today in the dark, I realized that that’s exactly what it is. There’s a soft glow coming from above my curtains. There’s a dim light escaping from the door down the hall where the curtains aren’t drawn shut. There’s a small wifi signal that is glowing green by my TV. My coffee maker has 2 small white lights, and my microwave has the time.
Aside from these tiny light sources. It is dark. I know my gatorade is a dark blue. I know my journal has swirls of orange and pink and gold. My glass pears are the most gorgeous shade of blue. But here, in the dark, the colors are only imagined, and I quite literally am surrounded by a 1940’s stop motion film.
These filters that I shove on the pictures to contradict the idea of migraines being black and white, are actually an insight into the condition.
It’s also a reminder that, yes, some migraine patients aren’t absorbed by this life.
I don’t struggle with this condition because it’s hard for me to wrap my mind around it, or for me to put into words what my day to day life consists of. The struggle comes from understanding that I am one of the migraine patients that simply doesn’t respond to treatment. And, that statement, is what the entire world around me, can’t grasp.
This community of migraine sufferers is small. It also isn’t actually measured. There is no statistic, because even doctors refuse to acknowledge it. I mean, most of us can’t even get in to see a doctor more qualified than a neurologist because the lack of certified headache specialists is only growing.
I can give you the numbers for people who suffer from Stoneman Syndrome, it’s 1 in 2,000,000. Alstrom Syndrome only has 502 reported cases… across the globe.
It’s a reminder that migraine patients only get treated to an extent.
Amitriptlyne, Norptriptlyne, Topamax, Propranolol, Verapamil, Keppra, Roweepra, Cambria, Migranal, Rizatriptan, Butalbital, Midrin, Tizanadine, Depoprovera, Promethazine, DHE infusions, Naproxen… and now Aimovig.
This is just 4 years. This isn’t even a full list. This doesn’t include items that were tried once and tossed away because of the horrible side effects. This doesn’t include what has been tried by various emergency rooms.
Now… Throw in over the counter or medicines that may have no relation that were tried anyway…
Advil, Excedrin, Tylenol, Motrin, Allegra, Claretin, Benadryl, Sudafed, BC Powder, Excedrin, Excedrin Migraine, Excedrin Extra Strength, 800 mg Ibuprofen, Hydrocodone, Tylenol III w/ codeine…
Oh, and I’ve missed some. No doubt. But pile these on to the physical therapy, the massage therapy, the sleep regulation with melatonin, the essential oils, the stress reduction therapy, yoga, meditation, conscious breathing, chiropractic, dietary restrictions, dietary eliminations, cbd oil, thc infused massage lotion, juice cleanses, hypnosis, rigorous time management requirements…
Do you get the picture yet?
I just started month two of my Aimovig trial. Next week I’m walking into my doctors office to give him the update he doesn’t want to hear… I have gotten worse. I no longer can look at my cute little “4 day migraine guide” for when my medication will work and when I just need to lay down and not push through… there isn’t 4 days. There is a brief pause every few days where for 20 minutes I might be able to breathe without pain.
And, as a good patient, I’ll schedule my appointment with him again in a month to see the progress once more. Because, I understand that medications of this caliber must build up in your system before they can really be monitored. Each (monthly) shot costs $500. Thank god for insurance coverage.
But, I won’t just be walking out. I’ll be asking for a referral to a pain specialist or a spine clinic or an acupuncturist. Whatever he’ll give me, I’ll take it.
This doctor can’t help me anymore, and his positive “everything is going to get better attitude” isn’t sufficient for a patient that hasn’t responded to a single treatment.
The only thing I’ve responded to, is a lack of treatment.
Day after day, new things go wrong. My knee injury reminds me that it only partially healed because of the rigorous physical therapy. My shoulder injury, the same. My carpal tunnel, the same. But, as my last physical therapist so politely pointed out, my body no longer works like it should. Every joint pops. I move and something cracks. It isn’t painful, but I should be able to hear my virtual yoga instructor more than my joints. I moved my wrist wrong yesterday, only to have it swell up to the point where I had to pry off my rings. I can’t even open tupperware containers.
To say I feel like my body quit on me, feels quite accurate. But, there’s days where I can’t even stand up, so those are more qualifying days for that thought to cross my mind.
So, when I don’t bother making new friends or planning much of anything. This is why.
I read today multiple stories of people in remission or how heartbreaking it is to leave remission. I have never experienced remission.
I don’t respond to your “how have you been since we last talked” messages, because there’s no point explaining to someone I barely know that I’ve left my dark cave only a handful of times and am berated with more bad news than good.
I spent energy I didn’t have yesterday on base to get a new ID card as my lack of full time college student status has required a new version of insurance. They won’t however let that insurance kick in, until I turn 21. So, they can’t issue me a new ID until that day.
So, goodbye to my cute little mimosa and lox brunch plans, and hello to a few more hours on base getting my ID card so I can attend my doctors appointment as intended the next day.
Yesterday I was mad. Being in this position, I have to put everything on hold to fight for insurance and spend my energy fighting for even a small rate of social security payments. Which means that celebrating my birthday, doesn’t qualify as a priority.
So now, through the pain, I’m gearing up for a way too event packed weekend. Friday, I get to meet cows. Saturday a pumpkin patch and a minor birthday celebration with my brother. Sunday, I get to meet Nicholas Sparks. Monday, I get a new ID. Tuesday, doctors appointment. Sometime after that, a homemade mimosa and lox brunch bar… And then I intend to sleep until Halloween.
Today I took my medication and it made me feel worse.
So yes, I spent the entire day staring at the blank, black and white room that surrounds me. Like I do most days.
And I don’t expect you to really understand. Just acknowledge that this isn’t the chronic migraine your aunt magically overcame when she combined Jujutsu, homemade lavender lattes, and a strict dietary regime that required her to eat an apple-mix flavored tic tac every 2 hours.