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Working with Migraine Disease – BlogPost #2

April 9, 2015

Or maybe I should call this post “Not Working with Migraine Disease”.  Migraines are difficult.  Trying to work, whether at home or an office, with migraine disease is extremely difficult.  Trying to work with chronic migraine disease can be impossible.

One thing I have learned about migraine disease and migraineurs is that we are ALL so very different.  Instead of generalizing about working with migraine disease, I will just tell you my story.  As I mentioned last time, my first migraine happened while I was working 23 years ago.  I was able to take the rest of the day off, go home, and recuperate.  My boss, my job and my life were not permanently affected – my migraines were still episodic.  (Please see below for the difference between episodic and chronic migraine).  No permanent damage was done to my career.

The next time I remember my job being affected by my disease was when I was working for an animal rescue group in Utah.  This was also around the first time I was diagnosed with depression, a comorbid migraine disease (more about that in a later post).

Rosie and I at the Utah sanctuary

**********Rosie and I at the Utah sanctuary**********

A few of my colleagues, my bosses and I went on a business trip to Chicago.  At that time, I didn’t know that travel, especially air travel, is one of my triggers.  Hell, I didn’t even know what a trigger was.  After an extremely stressful flight and a night out in Chicago, I ended up in the ER.  For years I blamed this 100% on drinking too much.  Now I give the drinking about 25% of the blame (although drinking on a business trip is NEVER a good idea).  I had plenty to drink on other occasions in my life.  I even had plenty of horrible hang-overs without ending up in the emergency room.  The migraine disease is what pushed me over the edge.  Shortly after this, I was laid off.  There were definitely other reasons why I was laid off.  Whatever.  Ending up in the ER during a business trip after a night of drinking forever damaged any credibility I or my migraine disease had in the eyes of my employers.  Right or wrong, it just was.  There’s always an up-side to these life events, and mine was that I returned to the Bay Area (I didn’t want to remain in Utah), went back to school and graduated with my MBA with honors (Beta Gamma Sigma).  My migraines ran rampant during my second visit to university, but I was able to succeed with the support of my professors, parents and friends.  And Rosie, of course….

Job Loss #2.  At the beginning of 2009 during my first post-MBA finance job, my migraines were chronic, and I was totally miserable trying to keep up at work and everywhere else.  My incredibly wonderful GP (who still supports me every single day) had been suggesting for quite a while that I go on disability.  Going on full-time disability would have meant losing my job, because I was the only person doing my job, and rightfully so, they would have had to hire someone else in my place.  Six months later I found out I could go on temporary part-time disability (though the state of California for one year) and still keep my job.  THAT sounded like a good compromise.  I started on disability in June 2009.  To that point, all my down time and personal time was spent on the couch in pain and depression.  Guess what happened next?  At work I accidentally received a copy of the Craig’s List ad bill advertising for my replacement.  To make this long story shorter, I came to an agreement with them that I leave.  But in reality, I was fired.  Or I would have been if that Craig’s List bill hadn’t crossed my desk.  After applying for permanent private disability insurance through my employer and SSI through the Feds, I was denied.  It went something like “We understand that you have daily migraines, but we believe that should not affect your ability to work forty hours a week.”  So I had to find full-time work again.

Fast forward to 2015, and basically the same thing has happened in my current job.  I went on part-time disability again in February.  The near future will tell what happens with my job and career.  I’ll let you know when I know more and can’t really say more than that now.

Many other migraineurs have similar experiences.  With no test or MRI available to definitely prove we have migraine disease, many doctors, employers and others use this as an excuse to simply not believe us, not support us, and treat us like crazy, whining losers.  Some of us wish we had cancer or our arms had been chopped off.  Then society and community would rally around us.  Instead we are thrown back into society to fend for ourselves.  I seriously thought I would end up homeless at one point in 2010; a thought that was unimaginable to me a few years before.

I think the worst part of all of this is having to give up my dreams for my career.  My work-life was always a sense of pride and accomplishment for me.  I felt productive and smart.  I felt like I could help people, animals and/or society.  I didn’t pay USF something like $70,000 for my MBA so that I could hang a piece of paper on my wall.  I have had to accept that I will never be able to have a great finance/investment job that I wanted after USF.  I can’t be a marine biologist like I wanted to be in elementary school.  And I’ll never be able to open that animal sanctuary – Rosie’s Ranch – that I often dreamed about.  I have grieved for those losses and am looking forward to a less active future, just trying to stay afloat, just trying to work at something, anything a couple of hours a day.  While depressing, it’s better for me to try to be realistic.  To try to put my energy into something doable.  I think working is important for chronic pain patients, but work can be many things.

  • Working at home to make life better for us and our dogs
  • Advocating for others in pain
  • Spending some time in the garden
  • Learning more about migraines
  • Keep working at my current job as much as possible

As you can see, it’s a work in progress…

Here are a few more things that help keep me positive:

  • Soccer, especially the US Women’s National Team (I can’t believe I forgot this last time!)
  • Memories of my 2003 bicycle trip through the UK

Day 1 Land's End GroupDay 2 Dartmoor with Repetti and TimDay 10 Forth Bridge Group 2DSC03352Sandra and Sara Stonehenge croppedDSC03512

Helpful Links:

Talk at ya again soon, and as always, stay positive!     Sara


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