Living with a Child who has Chronic Migraines

We all have stresses in our lives.  Many of us walk around with brave faces that are deceptive to those around us.  I will often find myself among a sea of people looking around, curious about what life struggles they have or share with others.  Always trying to find the good in those who are rude to others, I think to myself, “Who knows what they’re going through…and others are judging.”

Last night, I stood in a line waiting for my daughter’s prescription.  It was her medication to help with the pain of chronic migraines she has had since a child.  It was almost two weeks overdue, and she was left to struggle through the pain while a prescription company held it captive while making decisions on my daughter, unknown to them, and overruling her neurologist.  As I waited for the long waited medication to help my child, a woman in front of me is picking up a prescription for her father.  She is older than me.  I think to myself how fortunate she is to have a parent nearby.  She is handed paperwork to fill out to authorize her to pick up her father’s prescriptions.  She takes it, sits down, and she gazes at the paperwork.  She looks tired and worn out.  It’s quiet in the line of people, and she suddenly yells, “F*CK!”  I look over at her.  Distress is overruling her as she looks up and says, “HOW THE F*CK AM I SUPPOSE TO KNOW ALL THIS INFORMATION TO FILL OUT?”  Others start rolling their eyes.  To me, I see a woman overwhelmed with the weight of a loved one on her shoulders.  In this case, her father.  She’s desperately trying to get the medication to him and is inconveniently held hostage by the pharmacy.  I get it.

I’ve watched my daughter suffer with trips to the neurologists and other specialists going nowhere.  We’ve been through it all, food triggers, thyroid checks, allergens….you name it.  The cure?  Well, there isn’t one, I’m told.  I’ve watched my daughter suffer in bed for days.  I’ve had prescription companies play games holding onto medication that isn’t suppose to lapse.  I’ve watched medications change her into another person (and not in a good way).  I’ve changed diets, gone to allergists, and I am that woman worn out wanting to scream out the words that woman said when just one more thing was thrown her way.

I go to 504 meetings and get questioned by a county doctor who isn’t a neurologist and isn’t an expert, “Have you tried this?  Have you tried that?  I went to a migraine seminar.”  My negative thinking starts kicking in, “Well, good for you.  You haven’t mentioned one thing I haven’t tried, but you went to a seminar, so you have all the answers.”  Even the most well meaning people can come across in a bad way when you’ve been through it all.  I even had to correct my thinking coming home, “Well, how many doctors would even bother attending a migraine seminar?  Heck, I’d like to attend one.”  It seems even current medicine doesn’t have the answers.

Then, you come across the know-it-alls…the people who will throw acupuncture and yoga at you without knowing a diagnosis or what the cause might be.  It can all be so frustrating.  You hear the words and picture slapping them upside the head while you calmly say, “Thanks for the suggestion!”  I didn’t ask for your advice.  You see, I’ve been through it all and for years.  Even at the school, when she misses yet another day, I’ll be told by a teacher, “Oh, yeah, I get migraines.  Those hurt.”  Have you had them for THREE WEEKS STRAIGHT????  Did people think you had a stroke from them?  Were you completely disabled and unable to live life?  Were you hauled out of school by an ambulance in front of your peers because you’re at high risk for a stroke at a young age?

She suffers in silence.  She doesn’t know what it’s like to be a “normal” teenager.  On a good day, I see her smile.  I never see it but for a day a week, maybe.  How I long to see her smile daily!  That day will come.  That, I have to be positive about because, her family is her rock.  When one suffers, we all suffer for it, but as a group, we will fight it…together.

With any parent who has any child with a disability, it’s hard.  It’s hard for others to understand unless they’ve been there.  It’s heartbreaking to watch your child suffer.  It’s annoying when well meaning people start to grate you with their unsolicited advice when you’ve done tenfold anything they can think up.  It isn’t new to me, this war on migraines.  I’ve read it, practiced it, fought it, and I refuse to give up because giving up is not an option.  The ones who understand it all are the ones who have lived it.

I try to take the suggestions with a grain of salt.  Well meaning people who have no clue as to my daughter’s medical history.  Whatever you’ve had doesn’t equate what she has suffered.  My heart breaks for her.  She’s a child with a heart and soul.  She loves to learn.  She becomes isolated from the pain and suffering.  I tell her I’ve made an appointment with a specialist in New York City and see her light up with new options on the horizon.  I want her to see what it’s like to not be in pain.  I want her to be able to have a taste of what it’s like to be like other kids.  I want her to be able to dream of her future and not picture one of not being able to attend college due to this battle.  As she discusses this new doctor she’s going to see, she starts talking about the future.  Our baby steps have turn into sprints and marathons in a quest to release her from a migraine prison, but we run that race together because she will never run it alone.  Once we reach that finish line, she will be free to run her own race, with me being her biggest cheerleader.  Hope is everything for everyone, and we must always keep the faith so that our children never lose their own.

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