Lying McLiarson: Depression

You're a puzzle piece without a puzzle, Depression tells you.

Again with the lies.

She sees only the part of you that's broken, telling you that's all you are for so long you almost believe her. You consider never showing your whole self again.

The lies.

The world teases with drips of orange and red, but she locks you in her pillowy claws until your bones ache for sun.

Whore of deceit.

You kick. You cry. You sleep her away. Her lies melt into the evergreen of winter.

You are free again.

The To Done List: It Will Change Your Life, Probably

I don't do To Do lists. They depress me. They loom large. I make them endless. I make them long. I make them unwieldy. 

http://farm9.staticflickr.com/8470/8114435201_19f98222ca.jpg

But crossing things off feels good. That sense of accomplishment? It's delicious—a beacon of hope.

Whether you like your lists handwritten, on your iPhone, or in your head, a list of accomplished tasks does something to your brain like nothing else. I GOT THAT STUFF DONE.

IMG 0529

Enter the To Done List.

Or: SHIT I ACTUALLY DID DO TODAY.

The next time you get to the end of your day feeling defeated try this: sit down and make a list of everything you did accomplish during the day. Everything. When you are someone with chronic illness or young children or just your average person trying to keep it all together, this is an important exercise in remembering you didn't do nothing today. Hell, try it right now. I don't care if you are still lying in bed. You read this, didn't you? Let's do this. 

Life as a passenger.

Here's my list so far:

  • washed dog bedding
  • put on dog's coat
  • moved son's laundry to dryer
  • reorganized cat food and litter box
  • ordered laundry soap
  • ordered halloween costume accessories
  • emailed one doctor, booked appointment with another
  • work-related research project
  • photographed items for future blog posts
  • put new blanket in dog crate
  • chatted with friends for a bit
  • talked with my son about weekend plans
  • ate breakfast & lunch
  • did a load of our laundry
  • got dressed, brushed my hair and teeth, and left the house
  • picked kids up from school
  • took kids to extracurricular activities
  • helped kids with homework
  • unpacked boxes
  • went on a nature walk with one of the kids
  • took more photos for family stuff
  • moved portable heater/fireplace
  • put away china in kitchen
  • straightened up in kitchen/dining room
  • helped kids with laundry
  • ate dinner
  • edited photos
  • updated family calendar
  • dealt with some email stuff
  • worked on blog-related work for about an hour (writing, editing, photos, emails, ads, social media etc.)
  • repaired iTunes library issues on phone

Oh, and posted to my blog. That, too. Calling this day wrapped. Catch y'all next time. Enjoy the fall colors. Damn trees are showing off like crazy around here.

Downtown was showing off yesterday. #latergram

 

 

 

Deliciousness Of Rain

The pain creeps up from my toes, and I don't know why. Flu? Fibro flare? Whatever, it's unwelcome and ill-timed. 

I grab for my solutions, the things I expect will make it better, and they mask it for brief moments, and then I'm forced to admit The Ick is winning for today. 

Between its wins, I fit mine. 

Children parented, conversations of importance, boxes unpacked, and clothing sorted. Counters are wiped, and towels are folded.

Small wins. Big wins.

Date nights and gardens tended.

Love.

Dreams.

The scent of the first rain sneaks in through our window. I grab it as it passes over my tea.

A little win. 

I put these wins together into a box I keep to show to myself when I forget. I say, See! You are a winner! Look! 

I pour them out into a pile and feel them tangle between my fingers. All of the wins. The big ones fall to the bottom of the heap. The little ones are plentiful and the easiest to see. 

I vow to add more, even if I have to squeeze them in between the losses. 

The Importance Of Taking Sides

What can I do, you ask me? How can I make it better for you? How do I ease your pain?

Take my side?

Of course. No hesitation. Not a millisecond.

Phones, pillows, water glasses are moved in less time than it takes to run a red light.

Will it work? Will it fix my pain? We don't know. I don't know. You don't know.

What is known is that you take my side; I take your side. In an instant. Just because it might help.

We give our best and the most to the people we love because their journey is our journey.

Better together. We really are when that's how we see ourselves—together, as a team.

My Body Stole My Hair: A Poemish Thing

My body let me wake up today, which was sweet of her.

Then she decided to knock me back out for about three hours when I really had better things to do.

I wish she’d ask me about my plans for the day before she does these things.

Cunt.

And we need to have a meeting about the condition of my shoulder. Quite sore. I get the feeling she’s been out partying while I’ve been home playing house with the Brady Bunch.

The voice came alive inside her head.

We Interrupt This Bloggy Stuff To Kick Some Diabetes In The Butt

My nephew is quite awesome. He married a quite awesome chick. She has diabetes. Diabetes sucks. Plain and simple. It just does.

Alicia does not suck, however. She is awesome, and she’s walking this weekend to raise money to fight diabetes. I have already kicked in $100 to sponsor her. I would LOVE it if you would contribute any little bit you can spare ($1, $5, $50) to help her meet her goal. If nothing else, please click through and read her story. She’s a cool bean. Leave a comment on her blog and tell her so.

Thanks!

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Living With the Actual Tourette's Boy

I was going to go to bed. Read. Relax. Enjoy some time where the kids weren’t at each other like a married couple in their 40th year of a loveless union.

Instead, I’m up. I’m listening to my 12yo sit at the dining room table working to relax himself with a pile of LEGO bricks and a podcast on Wolfram|Alpha as his body runs through a series of vocal tics, the most offensive of which sounds like he’s going to vomit.

Tics wax and wane, like the phases of the moon. Not with the predictability of the lunar cycles, however. Instead, people with Tourette Syndrome and their families ride the waves of tics as they come and go. Sometimes the tics overlap one another. They can be vocal or motor in nature. Complex or simple. And every person’s experience is a little bit different.

For all that my son has been through because of TS, he’s surprisingly nonchalant about it most of the time. It’s just who he is.

But as his mother, in the other room, listening to him choking, sniffing, gagging—it hurts my heart. And it sucks.

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The Family Tard Cart

If I could afford it, this would be our family car.

cool_20short_20bus

Instead of shirking away from the word retarded, we embrace it. Steal it’s power back.

If this was our car, we’d paint “Family Tard Cart” on the side in gothic letters and cruise around town with pride.

Why? Because that’s who we are. We’re all special. And we rock. We have acronyms and long words after our names like ASD, TS, OCD, ADD, and Depression, and Migraine, and Fibromyalgia, and we’re crazy homeschoolers, too. Oh, Lord!

I think it’s high time the special needs population reclaimed the words used against them.

It wasn’t that long ago that “queer” was an insult. Now there’s a Queer Nation.

Not so many decades ago, my son would have been locked away, considered possessed in some cultures. My daughter would have been thought too nervous and fragile. I would have been kept on the upper floor, never seen, and seldom referred to. Now, thanks to modern medicine, and education, we roam free. Scary, huh?

There’s no reason our short bus has to be ugly. There’s no reason for us to hide in shame. There’s no reason for us to let words like “retard” belong to our enemies.

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Tied Shoes and Ponzi Schemes

Tied ShoelacesImage by sobriquet.net via Flickr

I taught my son how to tie his shoes today. Not that two-loop fake tie, but the tie that actually stays tied. He’s 12. It was time.

When you’ve got a kid with dexterity issues, you put these things off. Aspies are notorious for having trouble with things like dressing themselves. Show me a teenage boy in elastic-waist pants with slip-on shoes and a collarless shirt, and I’ll bet my mother’s underpants he’s surfin’ the Autistic Spectrum.

Bug’s been having me tie his shoes every damn day before welding camp. (They require you to wear real shoes, hence the ties.) After exposing my crack to the crack smokers in the hood outside camp one too many times, I decided to teach Bug the real way to do this shit.

As we cruised along the freeway toward camp, I had Bug put his right foot up on the dashboard. “Okay, make a bunny ear loop thing using the right lace with your right hand and pinch it. Now wrap the left lace around that looped ear and shove a piece of it through…Oh, fuck. Hold on. I have to merge. Okay, make the loop again. No. With the other hand. A bunny ear. Here, let me show you with my iPhone charger. Like this. Yeah, I know it doesn’t look anything like a shoelace. Try putting your left foot up instead so I can see your foot better while I’m driving. Oh, nevermind. Let’s just do it when we get there. I don’t feel like killing a shitload of people trying to teach you to tie your shoes while I’m driving. Yes, you can turn NPR back on. Yes, I see the humor in the fact that his name is Madoff and he made off with everyone’s money. Do you know what a Ponzi scheme is? Uh huh. Yeah. Really? From a podcast? I see. Yes, I’ll help you with tying your shoes when we get there.”

We park. I get out. Ass crack exposed. I tie his right shoe to demonstrate. Bug does a fumble-fingered attempt at the other shoe, making the mistake of a too long second loop that results in the single loop final tie. We’ve all done it. It happens. I make him do it again. This time he succeeds.

As we walk into camp, I tousle his hair and say, “Bug, I’m glad you learned to tie your shoes. Now I know you’ll be able to move out of the house, go to college, and teach your kid to tie his shoes some day. Plus, it’s about fucking time.”

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PSA: 5th International Scientific Symposium on Tourette Syndrome a Huge Success

image Front of the Class Poster

The national Tourette Syndrome Association, Inc. brought together 250 delegates and internationally renowned scientists, clinicians and other experts from 17 countries, including Argentina, Belgium, Canada, France, Germany, Iceland, Israel, Japan, South Korea and Spain, to share and discuss the latest research into and treatments for Tourette Syndrome. The Symposium was held in New York City on June 12 and 13, and focused on the advances made since the last Symposium which was held in 2004. Notable hot topics were deep brain stimulation (DBS); the development of animal models for the study of TS; and the use of cognitive behavioral therapy in reducing tics. However, fields as wide and diverse as genetics, neuroimaging, neuropathology, epidemiology and neuroimmunology were all covered during the course of the conference. Presenters conveyed their research findings through platform presentations, small group meetings/workshops and poster displays.
The Symposium was co-chaired by the TSA Scientific Advisory Board co-chairs, Peter J. Hollenbeck, Ph.D., Purdue University; Jonathan Mink, M.D., Ph.D., University of Rochester Medical Center; and John T. Walkup, Johns Hopkins School of Medicine. The program was developed by a Steering Committee chaired by Kevin Black, M.D., Washington University School of Medicine.
Dr. Black commented on the success of the event and the high level of the material presented. "The quality of the presentations was superb. We heard breaking news on several fronts: a report from the CDC on the first nationwide survey of people diagnosed with TS, an update on the search for genes that cause TS, an fMRI study of how the TS brain's organization develops in adolescence, discussion of animals that have tic-like movements and may help us find new treatments, and compelling results on PANDAS with a very lively discussion of their implications. Much of the meeting was organized to shed light on the results of the recent NIH-funded multi-site controlled study of CBIT (Comprehensive Behavioral Interventions for Tics), presented for the first time at this Symposium. The study results were very compelling and I believe will help bring an important new treatment to the standard care of people with TS. It is not a cure, but it looks to be an important tool for helping manage and reduce symptoms."
The TSA's Early Career Research Award was presented to the TSA grant recipient Nicole Calakos, M.D., Ph.D for her work on synaptic and circuit level insights for TS and OCD using mouse models. Dr. Calakos was also among the 57 scientists who presented posters. Among these, six were scholarship awardees. The scholarships are part of TSA's commitment to encouraging young researchers to focus on pursuits related to TS.
Feedback from attendees was overwhelmingly positive and they stressed how the symposium provided a unique opportunity to hear not only the latest information about TS advances in medicine and treatment, but also to meet other medical and scientific professionals from around the world to share information, ideas and experiences. Attendees are now anxiously awaiting the next TSA symposium and expressed a desire for it to be held sooner than the next meeting which is scheduled to take pace 5 years later in 2014.
On Sunday, June 14, the final day of the Symposium was a 'Family Day' when local TS families were invited to hear Dr. James Leckman of the Yale Child Study Center talk about the medical and scientific advances presented at the Symposium. Douglas Woods, Ph.D., also  spoke about CBIT and the results of the NIH-funded study.
For more information and photos from the symposium, check out the upcoming issue of Inside TSA which should arrive in your mailbox in mid-September. Don't receive the TSA quarterly newsletter? Click here to become a member and start receiving issues along with exclusive access to past issues on our website!

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The Fourth

Fire Anemone

Image by califmom via Flickr

I’m not quite sure how our Independence Day will play out this year. Hubs’ counts are on the decline this weekend. So, crowds are off limits. We may head over to the Redwood City area to watch the fireworks from Redwood Shores and Foster City from the waterfront, which we can do from a number of spots west of Highway 101 according to a hot tip from Twitter. We’ll have to see how Hubs is feeling. Chemo really is making him tired this round.

If we do head over to the Peninsula, maybe we’ll stop in to say our babysitter/friend/awesome chick/neighbor who’s holed up at Lucile Packard Children’s Hospital trying to keep her previously transplanted kidney from being a reject. The turkey butt. Say a prayer and sacrifice your special vermin for K. There is nothing fun about being a hip, hot 19-year old stuck in the children’s hospital, where they limit you to PG movies and keep giving you your meds in liquid, child-sized doses when your pain is adult-sized.

I’d also like to give a shout out (how flippin’ old does that make me sound?) to my friends Hillary and Kim who turned 40 on July 1st and 4th, respectively. Who would have imagined 1 out of the 3 of us would be spending our 40th birthday sober? Certainly not the one I would have predicted, nor for that reason. How little our middle-school selves knew. Thankfully, we no longer have to shoulder tap to get our booze. Cheers to you, ladies. Salut! I look forward to joining your club on the 9th.

 

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PSA: Musical Minds on NOVA

NEW YORK - JUNE 3:  Neurologist Dr. Oliver Sac...

Image by Getty Images via Daylife

The national Tourette Syndrome Association, Inc. would like to inform you about an upcoming episode of "NOVA," entitled "Musical Minds" which will air on Tuesday, June 30 at 8:00 pm EST. Please check your local PBS listings for exact stations and times.

In this program, Dr. Oliver Sacks, world-renowned neurologist and author, explores how the power of music can make the brain come alive, how music affects the brain and how it can impact some neurological disorders. 

New York State percussionist Matt Giordano, and his mother, Kathy, appear in the show.  Matt, who has Tourette Syndrome, talks about the impact of music on his life.  This documentary was filmed in 2008 and originally aired on the BBC in the UK last year.

Dr. Oliver Sacks' long list of books include Awakenings (the film version starred Robin Williams as Dr. Sacks), The Man Who Mistook his Wife for a Hat, Oaxaca Journal and An Anthropologist on Mars. His most recent is Muiscophilia Tales of Music and the Brain. features Matt Giordano, Tobias Picker and other individuals with Tourette Syndrome.

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The Pain

Migraine is not just a Headache

Image by Migraine Chick via Flickr

I don’t remember when I got my first migraine because I didn’t know that’s what it was called. I thought it was a headache. I thought all headaches started out on one side of your head, knives of pain shoved under the edges of your skull, into your eye socket, your sinuses. Waves of nausea. Nerves on fire.

When I have a migraine, I have sensorial super powers. I have supersonic hearing, see a light on through 3 closed doors, smell a cracker crumb on the floor.

My hands and feet become ice cold, while my head becomes an inferno. My tongue feels thick. I crave a vice grip for my head and an ice helmet to cool the inferno of pain.

Over the 25+ years I’ve had migraine headaches, I’ve tried many treatment options: acupuncture, diet, preventative medications, abortive medications, massage, meditation, rocking back-and-forth in a dark room while crying in pain. Some have worked, others haven’t. Currently, I use a combination of things. That’s not really the point. I’m not searching for the magic answer. Just marveling at the phenomenon of the human body, I guess.

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PSA: Tourette Syndrome Awareness Month

TS Awareness Month is May 15 - June 15, 2009

Bayside, NY – May 15, 2009 - From May 15 to June 15, the Tourette Syndrome Association (TSA)—the only national, voluntary health organization for people with Tourette Syndrome (TS)—joins the hundreds of thousands of families affected by TS to help raise awareness of this baffling disorder during National Tourette Syndrome Awareness Month.
Marked by involuntary body movements and vocal sounds called “tics,” it is estimated that some 200,000 Americans have the disorder, with millions more manifesting associated conditions. National Tourette Syndrome Awareness Month, which was first established by TSA in 1997, provides an opportunity for the TSA, its chapters and others in the TS community to educate the public about this much misunderstood and misdiagnosed condition.
Throughout the month, local TSA chapters across the country will work to raise awareness, increase education and reduce stigma associated with TS. One such event is Government Relations Awareness Week from May 25 to June 1. During this week, TSA encourages its chapters and families to hold district meetings not just with elected officials, but also with community leaders to raise local, state and federal elected officials' awareness of issues impacting families living with Tourette Syndrome.
Some of the dozens of awareness events taking place across the country organized by national TSA Chapters include:
Georgia Chapter: Twitch & Shout Adventure Week, May 31 – June 5, Cape Twin Lakes in Winder
New Jersey Chapter: TS Day, Golf Tournament and Dinner, 12:00 p.m., Old York Country Club, Chesterfield
Long Island, NY Chapter: Family Fun Day, May 30, 1:00-5:00 p.m. at Jericho High School
Texas Chapter: Jazz Fundraiser, “An Evening of Jazz -- I Groove to my Own Move." May 15 in Dallas
Pennsylvania Chapter: Annual Legislative Breakfast, May 13 at 10:00 a.m. in the Capitol Building to show appreciation for the work of the state’s legislative leaders and promote awareness about TS
New Mexico Chapter: Annual Picnic, May 30 at 12:00 p.m. at Roosevelt Park in Albuquerque
Utah Chapter: Various school presentations throughout the month and a contest for Chapter T-shirt design

In addition, as part of the ongoing program partnership between TSA and the National Center for Birth Defects and Developmental Disabilities at the U.S. Centers for Disease Control and Prevention, now in its fifth year, a dozen professional education and outreach programs for medical, school-based and allied professionals, including sessions on Comprehensive Behavioral Interventions for Tics (CBIT) will take place during TS Awareness Month, including programs in Huntington, WV; Tulsa, OK; Lawrence, KS; Ocean City, MD; Keaau HI; Oakley, KS and Goldsboro, NC.
Marked by involuntary movements and vocalizations called tics, Tourette Syndrome is an inherited neurological condition frequently misunderstood and misdiagnosed, affecting more than 200,000 Americans. Founded in 1972, the national Tourette Syndrome Association celebrates 37 years of service to the TS community worldwide.  As the only national, voluntary health organization for people with TS, the TSA has a three-pronged mission of education, research and service and directs a network of 31 Chapters and more than 125 support groups across the country For more information about Tourette Syndrome, Tourette Syndrome Awareness Month or any of the events listed, please view additional pages at the Tourette Syndrome Association site.

Media/Press Inquiries: 718-224-2999, ext. 236; email: tracy.flynn@tsa-usa.org

[My apologies for not getting this announcement posted sooner. I think Hubs’ chemo brain is becoming contagious.]

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Change: The Feared Word for Special Needs Families

I mentioned in a recent post that our family’s medical insurance changed to Kaiser Permanente in January, requiring us to change all of our doctors.

This may not seem like a big deal if you are a family that moves often or has flexible children, but we are not that family. In fact, Bug and Peanut had been with the same pediatric group for 10 1/2 years. Add in Bug’s Asperger Syndrome and Tourette Syndrome diagnosis and we’re even less flexible.

Our former pediatrician understood Bug very well. He got Bug’s quirky Aspie tendencies. He connected with Bug, talked about gaming with him, made sure they were on good terms at all times. He understood Bug’s tics, the varied symptoms of Tourette Syndrome, and never hesitated to refer us to professionals when he was out of his comfort zone.

Today Bug had his first appointment with his new pediatrician at Kaiser Permanente. I hand-selected this particular doctor based on his online profile. (Have I mentioned that I love how Kaiser embraces technology. They totally get it.) He just read like a good fit, but that was just a profile. These things can be a crap shoot.

We arrived on time for our appointment, checked in, waited just a few moments, the nurse took Bug’s vitals, and situated us in an exam room.

Within a few minutes, the doctor came in. He was incredibly personable, shook my hand, said hi to Bug, and sat down to get Bug’s history, entering it into the computer as we talked.

He took the time to explain some of the subtle differences of Kaiser—how the immunizations are handled in a central location, how medical records from prior doctors are entered, etc. He gave me his card and wrote his email address on there for me to contact him directly with any concerns or questions.

He did a brief exam of Bug, talked with me about his BMI, past/current meds, and education, and then we were pretty much done.

Except for one thing.

Bug asked if he could have a glove from the box on the wall.

And, this is how you win over Bug. When he asks for something quirky, and you may or may not think you know why, say “yes.”

The doctor asked him if he wanted a white or blue glove. Bug chose white. Then Bug started to blow up the glove, making cheesy ‘hand’ jokes, and eventually turning it into a bunny.

We stopped by the pharmacy on the way out of the building to pick up Bug’s prescription, accompanied by the glove bunny. On our way out to the car, I told Bug I really liked the doctor and thought the appointment went well. I asked Bug if he liked the doctor.

“Yes, he gave me a glove. So, he’s not a strict doctor. A strict doctor wouldn’t have given me a glove. I don’t like strict doctors.”

Who knew? Well, the doctor did. That’s who.

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The Living Dead

Death haunts even the beautiful: an early 20th...Image via WikipediaI died for the first time in May of 2004. Kelly died and left. I died and stayed.

I died again on October 10, 2007. The school quit my son, and I quit life.

I don't know how to come back to life. It's been such a long time since I've felt like part of the living.

I'm good at faking it for the rest of the world, but Hubs knows. He knows because he's the one who takes care of his dead wife.

It is unfair, and I don't know how to fix it.

It is unfair to him. It is unfair to our children. It is unfair to me, but it is me.

How do you resurrect yourself?

Mind you, I have no intention of actually dying, at least not ahead of schedule or anything. But, this corpse I am right now, it's got to go.

I've had glimpses of being alive. They come in spurts, but never seem to stick.

I want them to stick.

I need them to stick.

I need to figure out how to string them together into living--make a chain of wholeness, lightness, happiness.

Until then, I thank God I have people who love me.


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Front of the Class

Hallmark Hall of Fame

Image via Wikipedia

One Last Reminder!
to Tune-In
This Sunday, December 7, 2008
as Hallmark Hall of Fame Presents
"Front of the Class"
on CBS
9:00 pm EST (check your local listings to confirm)

(If setting your DVR – remember to extend the recording time as the football game may go overtime)
An Inspiring, True Story about a Young Man's Triumph over Tourette Syndrome
Based on the Life of Long-Time TSA Member and Friend, Brad Cohen

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My Invisible Disabilities: Part 1

MigraineImage by makelessnoise via Flickr

I've talked a lot about my son's disabilities over the past 4+ years of blogging, but rarely mention my own. I think it's because I like to pretend they aren't disabling.

Ha!

Being a migraneur (one who suffers from migraine headaches) is an ongoing battle. Starting in middle school, I've been plagued with migraine headaches nearly every week of my life, some weeks even more. The only time I recall being migraine-free was the first 2 trimesters of my first pregnancy.

I found out about Imitrex when it first came on the market in the 90s. I'd had a migraine for 3 days, and ended up sitting at the doctor in a heap of tears and pain. He told me to hang tight, turned off the lights in the exam room, and stepped out into the hallway where he summoned a nurse, and told her to get an Imitrex injection immediately.

For the first time in my life, a medication got rid of my headache AND the other migraine side effects (nausea, light sensitivity, sound sensitivity, speech difficulties, motor impairment). It was amazing. It also felt like someone had place my heart in a vice grip for about 15 minutes.

Turns out you can't use Imitrex too often because of the side effects. I had one doctor tell me I'd end up having a heart attack if I used Imitrex as often as I needed it. So, I embarked on a journey to prevent the migraines.

After trying a whole host of pharmaceutical approaches to preventing migraines, I gave up. Nothing was working, the side effects were sometimes worse than the pain. I even tried acupuncture, which provided relief for a few months, then they were back.

So, I continue to get migraine headaches, usually a few times each week. If I catch them early, I can keep them at bay with ice packs and OTC meds. If not, I turn to the Imitrex or Frova. If they're really off-the-hook, I have to add pain meds to the mix.

But, no one can tell by looking at me that I suffer from this regularly disabling condition. I don't have a forehead tattoo alerting them, and I don't wear a t-shirt that says, "I have migraines, what's your excuse?" (Although, perhaps I should.)

Fortunately, I no longer work outside the home. Unfortunately, I do need to parent and homeschool my children. The great thing about homeschooling, for our family, has been the flexibility to accommodate our special needs without the usual battles of advocacy. I no longer have to explain to employers that I don't have the kind of headaches where you pop a couple of Advil, and go about your day.

Being a migraneur is one of the disabilities I live with. The other is Fibromyalgia. That one has been even harder for me to accept. I'll save it for another post.

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