"Who is that girl?"

trilobite fossils
picture   
   child with sparkling eyes
   caught in time like trilobites
   motionless and glorified

   picture   
     child with sparkling eyes
     beneath the surface, she fights
     desperate and horrified

     picture   
      child with sparkling eyes
      caught in time like trilobites

DNA in the Migraine

There is DNA in the migraine story of my family. My mom called them “sick headaches,” and sometimes I’d find her on the couch when I came home from school. These were the only times I ever saw my mom lay down during the day, and even with a “sick headache” she’d get up and start dinner as soon as dad’s truck pulled in the driveway after work. She never showed him her pain – it was embarrassing and a sign of weakness – but I saw how she suffered.

Around the time I turned 13, the head pain and nausea I’d been experiencing throughout my childhood was finally referred to by my parents as “sick headaches.” The stigma of these “sick headaches” (migraine attacks) was also attached, and I knew they were something I had to hide from others. I hid them for decades until I couldn’t hide them anymore. Even with regular medical care and a slew of migraine medications, I lost my job of over 20 years, because of chronic migraine attacks and comorbid conditions.

I don’t know if it was the fog of my own struggle with chronic illnesses or the learned embarrassment and fear of appearing weak from my childhood “sick headache” experiences – but I failed to recognize the symptoms of migraine in my child. She often complained of stomach aches in elementary school and had been sick in the car several times. When she started middle school, the head pain started and eventually became a daily occurrence. It wasn’t until her pediatrician referred her to a neurologist that she was diagnosed with migraine.

Even with regular medical care and a slew of migraine medications, she is still experiencing daily migraine attacks. She has the typical comorbid conditions (anxiety and depression), which make the migraine attacks worse. Treating her anxiety and depression is, in turn, hampered by the migraine attacks. Also, the trauma she suffered as a younger child likely contributed to the attacks. She’s stuck in this cycle that is not her fault, and I’ve been unable to break her free.

All of this is in her DNA, passed on from her family going further back than I am even aware. It’s not just the genetic predisposition for migraine but the family history of trauma, also likely going back further than I know. It’s like a glitch in the DNA, turned on by chance at birth, and compounded by negative life experiences – a family glitch we no longer hide.

Related post The Passage of Pain.

After the Migraine Attack

The migraine is over, and I’m ready to take on the day — or am I?

The first thing I notice, upon waking, is that the pain is gone, and I feel elated like the pain from yesterday has caused a rebirth in me! I move to get out of bed and sense the soreness that tightens and ripples through my body. I stand up, determined to ignore the aching, but my head reels and swirls causing me to steady myself for a minute. Then, adrenalin cascades through my veins as I contemplate the tasks ahead of me today.

Once dressed, I open the curtains and then immediately close them because the daylight feels too intense and is burning into the pupils of my eyes. A hat, dark sunglasses, and lots of squinting facilitate the morning drive to the kid’s school. Soon, I find myself sitting at my desk, staring at the computer screen and thinking, “What was it that I needed to do today?” I read the to-do list and decide to do it tomorrow and feel comforted by the fact that I actually made a decision..

I decide to write a post about migraine postdrome, also known as migraine hangover, in hopes that it may be helpful to others. For so many years, I was unaware of this final stage of a migraine attack and understanding it has helped me learn to cope better. The worst part of migraine postdrome for me used to be accompanying depression because when I realized that I was unable to perform at a “normal” level of activity after a migraine, I felt weak, lazy, and useless.

Now, I take a step back and remind myself that I can be productive as long as I modify my activity. Simple and mundane tasks are now on the to-do list for today so that when I am feeling better, I’ll have more time to focus on more ones. It is still a struggle for me to quiet the negative self-talk, but I’m very much a work in progress.

Migraine postdrome is real and can last for up to 2 days. With all the focus on treating the migraine attack, we must not lose sight of the final stage of migraine and how to recover in a way that works best for us.

For more information about migraine and migraine postdrome, visit the American Migraine Foundation.

Surreal Torment

Migraine
From danathepania.tumblr.com

No More Waiting

Yellow and orange paint dripping on black background.

Throwback to Waiting

https://undeniablysara.com/2016/06/26/waiting/

Trepidation

A winding road with trees and fog

Ending Invalidation

It happened again, or should I say it’s still happening.  Last night, I was talking with a close family member about my seriously ill sibling.  I can hardly imagine the mental turmoil and pain my sibling is experiencing, and I feel terribly for their suffering.  We spoke about the latest test results, how fatiguing the treatments are, and how strong they are to continue working during this illness.  I admire my sibling and hope they can recover quickly and thoroughly, to resume a healthy life.  

What happened during this conversation that has been lingering in the back of my mind since last night?  It is the starkly different approach to the invisible illnesses myself and my children have been fighting for years now.  I try not to bring up our health struggles, but in a moment of weakness and a longing to talk to another adult about a recent health concern with my youngest child, I did.

I was met with negative comments about my need to continually take my children to doctors, how the test results don’t mean anything,  and I should just tell my children to tough it out.  My children all have post-traumatic stress disorder (PTSD) as a result of repeated childhood trauma and exposure to domestic violence.  They struggle with depression, anxiety, and low self-esteem.  Asthma, chronic pain, and chronic migraine add to the already devastating diagnoses. 

They see a therapist weekly, have annual checkups with the doctor, and get their flu shots.  Also, there are urgent care visits for severe colds that aggravate asthma, in-office procedures to combat chronic pain, and those that attempt to prevent more migraines, as well as hospitalizations for depressive episodes and suicidal ideation. Do they see the doctor more often than the average kid?  Yes, they do – because they need medical care for conditions that are not visible to most people.

At the end of the conversation last night, I had a familiar, unsettling feeling.  When I was a child, I had several health struggles.  Some of them presented with obvious physical symptoms and were, in time, treated.  What I remember most about my health struggles as a child was being told that what I felt was imaginary, not real and that I was causing it to happen. 

Traveling in a car with me as a child was awful because of my severe motion sickness.  This was no secret, but I was always told that I was making myself sick.  For the life of me, I can’t imagine why I’d do that.  Vomiting in a car is no way to make friends, positively influence people,  or have any fun.  Eventually, that motion sickness turned into episodic migraines, but I was still bombarded with messages that I must be doing something to make myself sick.

As an adult, and in part because of an abusive, decade long marriage, the migraines became chronic.  After a vicious divorce and financially devastating child custody battle, the migraines only got worse.  Eventually, I was put on extended medical leave, but not after making significant and repeated mistakes at work because of my stubbornness to work regardless of my medical condition.  After all, I should be able to push through and stop making myself sick, right?  I eventually lost my job and have been fighting to regain my health and financial security for years now.

I don’t talk about my personal struggles with family anymore because I don’t think anyone wants to hear about it, and I certainly don’t need the negativity. I have a chronic neurological condition. It is real and invisible.  It has nasty leaches called depression and anxiety that drain me of any migraine-free days I might have.  I do not wish this on anyone, yet I have a child with chronic migraine.  I feel guilty and responsible for my illnesses and those of my children, even though I know I did not cause them.

Yes, I take my children and myself to the doctor to receive timely, appropriate medical care.  We also get up every day and push our way through and jump over (or crawl under) the hurdles life throws at us.  None of us have a potentially terminal diagnosis, like my sibling, but our lives are severely impacted by our invisible illnesses.  We didn’t cause them, and we don’t make them happen.  In fact, we are doing everything we can to get better, whether anyone believes it or not. 

The invalidation that happened to me as a child is still happening to me as an adult.  The stigma of invisible illness is alive and well in my family, but it ends here.  I will be the last of my family to be invalidated by loved ones about how I feel. My children will not be blamed for their illnesses, and they will be given the help they need to recover, so it doesn’t happen again.

Volunteer for the 2020 Migraine World Summit

A few years ago, I volunteered for the Migraine World Summit, and I’ve never looked back.

During a time when I was just beginning to climb out of a decade long chronic migraine cellar, I saw a call for volunteers on a migraine website I follow. At the time, I was unemployed and in the middle of an unplanned career change. I figured volunteering would give me some much-needed experience to help me find a job in my new career field. Looking back on that time, I had no idea how valuable this experience would be for me.

Yes, I now have some career-related experience under my belt, but I also have so much more than that. At Migraine World Summit, I am embraced by those who not only understand, believe, and support my chronic migraine journey but also value me for my strengths. On top of all that, I learned much more about migraine than I ever thought possible, and I continue to learn. Add in the feel-good vibes from helping get important information to other people with migraine, and it is a win-win situation.

In preparation for the 2020 summit, the Migraine World Summit is looking for volunteers in multiple roles including:

  • Social Media Manager
  • Community Support Ambassador
  • Content Editor
  • Copywriter
  • Website Developer
  • Graphic Designer
  • Partnership Manager
  • Live Event Planner
  • Video Editor
  • Executive Assistant

If you are interested, just fill out a short application form before November 1st, 2019. You can also visit the Join Our Team tab on the Migraine World Summit web page for more information.

Escape to Slumber

Woman sleeping in bed


Escape to slumber in the darkest night.
Heavy blankets help hide the fear inside.
Moonlight hidden behind thick clouds, contrite.
Their eyes weighed heavy, blurry with bromide.
 
Racing in circles, their thoughts fight and flight.
Replaying the past, like a movie slide.
Still frames, close-ups, emotions amplified.
Escape to slumber in the darkest night.
 
The movie plays on all covered in blight.
Each character struggling to face what died.
She covered them up and tucked them in tight.
Heavy blankets help hide the fear inside.
 
They woke in the morning and grinned, bright-eyed.
But then he broke in and unleashed his might.
She fought to save them and keep them bright-eyed.
Moonlight hidden behind thick clouds, contrite.
 
She schemed and planned and plotted for their flight.
He screamed and yelled and cursed them.  Amplified
by triggers and flashbacks that play despite
their eyes weighed heavy, blurry with bromide.
 
Safe now from him the future should be bright,
but his ghost invades. A demon bestride.
We carry him with us into twilight.
Never without the dead feeling inside.
                     
Escape to slumber.

Loss and Found Treasures

Loss and Found Treasures 

Chronic illness took away my health, my income, and my security. It also forced me to focus on my family – something I took for granted when I was healthy. After losing so much, I now realize that I have so much more of what matters. I have my loved ones, and I cherish them.  They are a treasure worth more than wellness, fortune, or invulnerability.