The Patient Speaks!

February 23, 2003

Awe…  Wassa matter?  Little boy/girl gotta headache?

If you have found this web page, I would expect there is a good chance you/ve heard this line once or twice before.  Even with all the advances in head pain medicine and public education, it would appear the vast majority of the world still does not understand our dilemma.  Therefore, it seems there is little tolerance and even smaller efforts made to “deal with us”.  Personally, I have a tolerant employer, but I talk with many headache brothers & sisters who claim to be hassled constantly.  This does not count the stories you read on the web or in newsgroups.

In trying to figure out what I have (in an employer) and what “they” don’t, I firmly believe it mostly comes down to communication.  Correct, concise, straightforward communication.  When I first got into the “headache game”, I kept my employer aware of exactly what I was doing to pursue a remedy.  Never, ever did I use the migraine as an excuse for poor work or to get out of work (other than doctor visits and hospitalization).  I treated this no differently than if I had broken my foot – which I did in 1980.  Just the facts.  K-I-S-S or, Keep It Simple Stupid.  Never NEVER do I walk around the office trying to elicit sympathy by wearing my poor, pitiful HA Face.  If I have a HA doctor’s appointment, I simply let my immediate supervisor know I have a “doctor’s appointment”, not a Headache Doctor’s appointment.  I have found it interesting how others around me wear thin with the headache that is giving ME the pain.  In short, I never dwell on my affliction, never bring it up, never use it as an excuse, never use it as a crutch.  Every day I push through and do the best I possibly can.

It is important to point out I am no better nor worse than anyone else.  In fact, I am pretty much a medical baby!  The best way is to practice the Golden Rule: Do onto others….  I can’t stand others whining about their lot in life, so it stands to reason they don’t want to hear about me, either.  Actually, the best thing I can hear at work – or life, for that matter – is the exclamation of someone I have known for quite some time that just found out I have chronic, intractable migraine.  They invariably say they didn’t know which means I am doing my job.  Make no mistake about it – my head hurts!  As I write this, my pain scale is stuck at a solid #6.  That’s a number six even though I take daily long-acting opiods plus the occasional breakthrough medicine.  I want no praise for my efforts, just the knowledge that I am doing my life’s work as best I can.

So listen to what my grandma used to say: Buck up, hang in there and don’t let anything stop you.  Do what is necessary to make the best of each and every day.  Now, if you’ll excuse me, I hear the garage door going up.  That means my wife is getting home and I have to practice my HA sympathy face before she gets upstairs.

(Post carried over from previous website)

Can you believe it!  January is but a distant, and very cold, memory.  A blink of the eye and February is here – the shortest, longest month of the year.  It’s that odd month that nobody really thinks about.  We all look forward to January as the first day of the New Year, and March as the first day of Spring.  But February?  Well, it was February 29, 1980 at 10:30pm that I quit smoking.

Now that the holidays are over, you stood in the ‘Return Merchandise’ lines for hours on end and your holiday credit card bills have all been paid off (sorry, couldn’t resist!), how is your HA pain doing?  Better?  Worse?  No change?  For me personally, I went through a really rough period.  So rough I actually called my doc and “whined”.  Now, as a manager of 150 people, I have very little tolerance for whining, but it was MY turn.  Fortunately, my doc is a very patient, tolerant person and was able to help me – and not out the door!  A week later, I was back to my old self, maintaining a consistent pain level of #4 to #6.

What are you doing for your pain relief and tolerance?  Are you actively pursuing treatment?  Do you keep on “keepin’ on”?  While not obsessed, I continue to read everything I can find about “my condition”.  Books, websites, pamphlets, etc.  I actually read the insert that comes with a new prescription.  It is a wealth of information.  (Yes!  I DO have a life!!)  When I see the doctor, I ask questions and questions and questions and more questions.  Another tactic – I go into the website of whatever pharmaceutical company supplies my prescription.  Searches on Google reveal a wealth of information.  It has become very clear to me over the years that the more informed I become; the better I can deal with my chronic pain, even if the actual level of pain is the same.  In the early days, a #6 HA would have been devastating for me.  Now, it is “acceptable.”

Hang in there.  Spring is around the corner.  Better days for us all.

(Post carried over from previous website)