My first migraine

Migraine has always been a part of my life. So when I was asked about my first migraine experience, I had to think a bit. When was my first memory of this neurological “storm?”
And then I stumbled across a vivid one. I must have been 6 because I was at a YMCA summer morning camp. I didn’t need or usually attend summer camp – my mom was a stay at home mom. So I must have wanted to attend, or even joined with a friend.

I don’t remember all the particulars, but camp ended with all the children meeting in the YMCA gymnasium before it let out at lunch time. In my memory, the room was huge and echoey – in that way school gymnasiums are, hundred of kids on wooden bleachers, singing or shouting and stomping a camp song together. It was loud. I remember sitting with my group and trying to participate in the activity. I could not perform well; I couldn’t sing along, just stare and go inward. The entire episode was intolerable. There were too many people and it was too damn loud and I felt sick to my stomach and… there was something quite wrong with my whole head. It vibrated and throbbed as if it’d been struck like a gong. I wasn’t having fun at camp; I wanted out. I was “spaced out” and confused and I wasn’t able to think of what to do….except wait for camp to be over and wait for my mom to pick me up. I wasn’t scared and I tried to keep up with the activity.
When I got in the car, I was quiet. And since the loud echoey noise was left in that gymnasium, it was easier to handle my gong-head and nausea.
I must have looked pale or distant or like something was wrong and I must have been able to verbalize some of what I was experiencing. And my mother really saw me and had no hesitation diagnosing, “You are having a migraine,” she said.
Some people wait years and years for their diagnosis. I was diagnosed in a few minutes.
How did my mom know? Because she was an episodic migraineur. She struggled with hormone and stress triggered migraines one to a few times a month. She described them as 3 day crescendos, with the pain becoming it’s highest level on the last day. Then she described the postdrome as feeling “bruised all over the day after.”

She did not have aura or visual aura. And neither do I. And for many many years, she did not have anything for treatment but aspirin, until the 1980’s when ibuprofen became available. And by the time my mom went into menopause, her migraines nearly ceased to exist. My dad would also occasionally get “weekend migraines” from stress letdown from his work. I’m told even my grandparents had episodic migraines. It’s clear I have a very strong genetic predisposition for Migraine.

So on that day… that YMCA camp day with my migraine, my mom took me home, gave me some yummy chewable aspirin and some food and drink, and put me to bed.
And I recovered.

I also remember another migraine when I was older… probably age 10-12. I was in bed in my dark room, miserable with throbbing head pain and light sensitivity, and waiting for the ibuprofen to start working. My dad came in to check on me and he started to massage my head. He was used to doing this for my mom and her migraines. He massaged my head, found where the pain was worst and applied pressure. I remember it as one of the most amazing feelings of my life… like my dad was expelling the migraine from my brain.
For so many years, I was in good control of my migraines. Ibuprofen and rest was my effective treatment. I never doubted it would be a part of my life, but I didn’t have any idea it would be so much more.

Why Chronics need other Chronics…

I’m still me. I’m still in here. But there’s this strange and ridiculous chunk of my life that is this other thing.

What would my “normal” friend say if I told her I’d been wearing pajamas for 5 days? What if she saw my freezer drawer with 15+ ice packs? What if she saw my medication drawer?
She might run screaming. And understandably so… my Chronic life is so far from what my Normal life was. I wouldn’t have understood it back when I was a Normal. And I’m a nurse; I should have understood! But nowhere in school or clinicals did they discuss chronic pain.

Which is why my Chronic friends are so critical. Some of our correspondence through Facebook messenger, Instagram direct messages, and texts are freaking hilarious. Hilarious in a dark, wacky, weird way. My Chronic friends are people I can vent and connect.

When we ask each other how we are… we don’t smile and lie and answer “Fine.” We lay it out honestly: “I’m still in bed and it’s 1pm! My head is a bastard and I’ve got a heater on my sacroiliac nonsense. How are you?” Sometimes we talk in Pain Scale: “My head is only a 4 but my RA is a 7 and I can’t keep my eyes open.”

We all have matching night tables with a pharmacy drawer chockful of medication bottles, “Big Bertha” pill organizers, an unusually large amount of icing and heating instruments, drug-free treatment mechanisms, massage gadgets, and other tools that poke, prod, stab, flatten, relax, bruise, knead, manipulate different areas of our body.

Our houses are not like other homes… we have a “nest” or a “perch” where we crawl to when the hurting is too much. It’s our Spot. Mine is my bed… in my bedroom where I haven’t opened the blinds in over 5 years. It’s where my kids and my husband look for me first when they come home. My Spot is surrounded by everything I need: many pillows and blakets, heating pads, my nightstand with it’s medication drawer and the second drawer full of topicals – Biofreeze, Voltaren, Arnica, IcyHot, essential oils, numbing sticks and more. And always a lip balm. Because lip balm is an amazing thing that is both critical for dry lips and can make us feel a little more alive!

Chronics need distraction. While we are in the nest, we can watch tv sometimes. It can be a helpful distraction from pain… during attacks computer screens and books are difficult, but Netflix… we can sometimes handle that! And we’re Netflix experts and we can talk show shop. “Did you watch that series?” “It was pretty good.” “Oh I liked that one a lot!”

We keep our phones nearby… it’s great to connect through Facebook support groups or text each other. We understand when it takes awhile for another Chronic to respond as they may be busy with very difficult task of SHOWERING. Or they may be too sick to open their phones. If they can respond, sometimes their responses might not make sense if they’re in a bad way. It’s hard to spell and autocorrect is a jerk when you’re hurting. Aphasia and brain fog certainly don’t help writing and communicating coherently.

Chronics don’t call or Facetime each other. We wouldn’t dare. That’s just altogether too intrusive. The other Chronic may have 3 day bedhead, drool marks on their face, ice or cups attached to their head. It’s a definite possibility. And that would be awkward.

Our calendars look the same: often littered with many doc appointments, therapy, treatment, and lab appointments, and the like. We may have a busy day with obligations of “Normal living”… those days usually have rest prep days and rest recovery days worked in – if we know what’s good for us.

Many of us have “furry caregivers”… our dogs and cats are Chronic comforts. They are so important and I know as much about my Chronic friends’ animals as I do about their children. We might try to hide some of our illness from our families, but our pets see it ALL.

We know how to celebrate the big things: “I did a load of laundry today!” “I cleaned the cat box!” “I made dinner!” And we applaud each other with celebrating emoticons and hearts. ❀😍πŸ’ͺπŸ˜ƒπŸ‘πŸŽŠ

We have found each other, we understand each other, we don’t have to pretend. And there’s an empathy and recognition that only other Chronics get… we care deeply for each other… we share pain and burdens and blessings. And we are always there to support and encourage.

Actual Chronic A, B, C conversation:

A: “I’d go but I’m in the worst shape: migraine everyday.”
B: “g*d da** it! It’s no f***ing fair!”
C: “I’m so sorry, I can’t believe how sh*t it’s been.”
A: “I feel like THE biggest loser.”
B: “I was saying exactly the same thing today.”
C: “No one gets it but you guys.”
B: “Me. Complaining everyday about something insane. Yesterday I couldn’t believe how bad my back was. Then today my arm! Yesterday my head was insane!”
A: “Seriously this all embarrasses me. I’m like only out of bed to go to the bathroom. My SI is giving me searing pain from my a** to the instep of my foot. What the actual f*ck???”
C: “And the weather! It’s been rain and more rain. There’s no way I can function with the s*it!”
A: “I took my son to the doctor today and found out they have an online scheduling portal, so I’ll never have to operate a telephone to schedule him in!”
B: “Golden!”

#ChronicMigraine #MigraineAwareness #SpeakYourMigraine #ChronicIllness #Automimmune #invisibleillness

February 2015… the first time I put my beautiful migraine Out There

It was a Friday and I sucked up my courage through enormous pain and symptoms, and I posted on Facebook:

A candid moment: Chronic migraine is a dead sexy disease – as you can clearly see. There is no cure, and medicines that work sometimes, don’t work other times. I wish my outward smile was always genuine. All I want is to be somewhat normal and free from daily head pain…and if I never take another pill in this lifetime, it will be too soon. I hate boring my friends with my oppressive condition, and I don’t look for pity – just awareness. Migraine is a neurologic event, usually with three stages and only one of them being head pain. I’m not a complete freak – there are more of us silent invisible pain warriors out there than you may realize. We are trying our best to live a full life and we just hate having to report the bad news to friends and our docs (we have lots of docs!) that this or that treatment did not “fix us” despite our hopes, efforts and faith. In fact some of the treatment side effects are worse than migraine itself. Sometimes the pain is so relentless – like endless waves of the ocean on a coastline – that you begin to really despair – it is a lonely place.

Peaceful brains and love to ALL!
Signed, a grateful soul ❀

The response I recieved was very supportive. 21 people reacted and 17 people commented.

I guess I had just had enough hiding. I was sick, so sick. And I had discovered others like me about 6 months prior. Had I found my voice for advocacy? It was my time to #SpeakYourMigraine

#ChronicMigraine #MigraineAwareness #ChronicIllness #invisibleillness

More Migraine & Headache Doctors

We need your voice in advocacy. Help us reach key members of Congress and encourage them to support an amendment to a bill that will provide funding for training of new pain medicine, addiction medicine, addiction psychiatry and headache medicine providers.

Click here to reach out to YOUR member of Congress:

#HOH2020 #HeadacheontheHill #ChronicMigraine #MigraineAwareness #AHDA

March will be better?

This has been a difficult cycle/phase. I’m sure starting with the holidays in November, and cedar season, following with the most wonderful event of our son’s wedding in early January. That took me a solid 4 weeks to recover. Which, while worth every minute, is a ridiculous amount of time.

With Headache on the Hill last week, I feel I’m still in recovery cycle… maybe another week? The weather is rainy and gross. My thyroid numbers are finally stable from my Emgality flop last Spring.

I’m puttering along… flaring with migraine or RA everyday. Pain, pain, pain, more pain, light sensitivity, nausea, hot flash, pain, pain, lethargy, worse lethargy. Opressive feelings of guilt, inadequacy, uselessness, burden to those I love. Facing the big question: do I have enough energy to shower? Wash my hair? Put on clothes or makeup? It’s terribly depressing and sad that my life has shrunk to the size of a tiny fishbowl. Just a fish, swimming in my bowl, ready to flip belly-up and float.

Trying to push through, rest as much as I can, hide as much of my disabilities as I can – because they are so embarrassing. Trying to focus on the important things and the good moments. Moments. It’s all life is… those moments.

November, December, January, February… bust. Maybe March will be better? I’m sure March will be better. 🌞 Or maybe April…?🌞🌞

#ChronicMigraine #MigraineAwareness

djk #MyBeautifulMigraine #invisibleillness

Migraines and marriage…

How to Cope When Your Wife Has Migraines

This is a great article. It’s not exactly Marc and my experience… but it’s great advice: #1 Love your wife, HATE the migraine. There is SO MUCH MORE I’d do… if I could. #2 Never take it personally… pain and chronic pain and frustration makes even the most lovely person act “off.”

(P.S. I love when you wear cologne, Honey Baby!)

Our shelves are full of wonderful memories:

2005, I was diagnosed with depression but my migraines were still episodic.
2019, all my babies grown and amazing big people: kind, smart, nurturing, driven.

But some of my favorite pictures are the ones where I’m struggling and my Marc is right there WITH me…

Marc always gets me new ice packs! He never complains no matter how frequently I need to ask. ❀
This was a Fourth of July celebration… and one of my Thunderclap migraines. Often, when I just CANNOT face social events due to pain, he will go on his own. It makes me SO happy that at least he can go! He’ll text me while he’s there, making me feel a part!

And the myriad of appointments he has attended with me…

In this life, I can honestly say… I have known such a Great Love and True Soul Mate…

I love you, always & forevermore.