Sunday, October 5, 2014

13.1 Miles to a Success Story in Chronic Daily Migraine (New Persistent Daily Headache)

Today, I ran a half marathon.  I finished with a giant smile on my face.  My time didn't matter, this journey's success came when I reached the starting line.  I am writing this post to share some great news in what has been a very long and challenging personal journey.  I share my story as a celebration, but also as a note of hope to anyone who may be fighting a similar battle.  I have read sad and difficult stories from others struggling with similar headache issues, but I rarely saw stories of success.  Maybe my post will provide a few new ideas or a ray of sunshine.  No matter what your struggle (and we are all struggling with something), I pray you will soon find some relief and comfort. 

My chronic pain story began over seven years ago.  It started with five years of pelvic pain and many blog posts along the way.  It took four surgeries and surgical menopause, but my pelvic pain was finally resolved.  Then, just six weeks later my headache story began.  Until this head pain began, I was one of those lucky women who never really got headaches, excluding, of course, the after effects of some fun nights in college.  Then, in August 2012, I got a headache.  That headache simply never went away.  It didn't take holidays or vacations, it pounding away 24/7.  No matter what I tried, my head hurt.  On the really bad days, the head pain was coupled with dizziness, nausea, diarrhea, and ringing ears.  

It was like a black cloud that followed me around.  It was there through three moves, two new careers, and three new schools.  It was raining down with full fury during the boring of the everyday and every family holiday, birthday, and vacation - from our 15th anniversary to our cross country move - my head pounded away.  While it was my head that hurt, I  wasn't the only one who suffered.  It is so true, "when mama ain't happy, ain't nobody happy."  Scott picked up tons of slack around the house and the kids had to (literally) tip-toe around.  I was cranky and tired and even simple things like grocery shopping often felt impossibly hard.  My mom listened as I cried on the phone and my mother-in-law gave medical advice when I needed it.  My close friends provided me a shoulder lean on and play dates for the kids when I was feeling my worst.  I am eternally grateful to the amazing kindness and generosity I found in those around me.  

All the while, I visited every "ologist" from East to West trying to find a solution.  I started with an ENT thinking I had a sinus infection.  I took tons of antibiotics and steroids.  It didn't help.  I even had sinus surgery.  It didn't help my head either, but it did solve my congestion issues.  So that was a good thing. 

Then, I was off to a gynecologist, thinking hormones might be the smoking gun.  I was only six weeks post-op from losing my last ovary when this all started.  In the throws of surgical menopause, I figured getting my hormones in balance would help.  It didn't. 

Next, I was off to the neurologist.  Then, off to another neurologist.  Then, to many other neurologists.  I had an appointment to see the specialists at Stanford Hospital before I had even figured out temporary housing when we moved to California.  There were MRI's and xrays and strange tests checking my reflexes.  The official diagnosis was New Persistent Daily Headache and/or Chronic Daily Migraine.  In lay person speak, it was a headache the doctors didn't really know how to treat.  Next, came the meds, all the crazy neurology medications.  They often would start to help, then things would revert, and then things would get worse, and then they would add another, stronger medication to the cocktail.  It was like the headache just found a path around every medication I tried. There was Topamax, Lyrica, Zonegran, magnesium, riboflavin, butterbur, feverfew and more.  Every one of those treatments came with really crappy side effects, things like personality changes, memory loss, dizziness, and nightmares.  We even tried an ongoing series of IV infusions which would leave me in bed throwing up for the rest of the day.  

Last fall, I even got a root canal thinking it might.  It didn't.  Truthfully, I really needed that any way.  My ancient filling back from my braces days finally gave way.  

The low point came after one very pompous provider claimed I didn't even have a headache.  I was in the worst pain of my life and she said it was anxiety and a simple ear infection.  I was crushed when she blew off my pain; I began to believe I would never feel better again.  By that point it was December 2013 and I was exhausted.  

My 2014 New Year's Resolution was to simply find the joy in each day and to not give up.  It was the best resolution I have ever made.  I was off to another ENT.  He was one of the kindest providers I have ever met.  Definitely no ear infection, but he had new ideas.  I went to vestibular physical therapy for migraine.  It helped.  It became my life line.  It wasn't a cure, but I could get through the day again.  

I saw a naturopathic doctor.  I went on a crazy diet that eliminated wheat, dairy, soy, most beans, all alcohol, and most everything fun.  I didn't help, but I started eating a little healthier.  That was good.  

I started an 8-week mindfulness series.  It didn't help my head, but it allowed me to focus on all the good in my life instead of the pain.  It brought a little more patience and appreciation of each day.  That was a good thing.  

I went back to the neurologist and asked about stopping the medication.  They said it was a mistake and prescribed something new, but basically the same.  It didn't help, but it gave me confidence in May 2014 to advocate for myself.  I stated I was going off the medications.  It took six weeks to taper off those powerful medications, but each time I lowered the dose, I felt better.  My nausea and dizziness dropped significantly.  My head still hurt, but I felt like myself again.  

It was then, way back in May that I signed up for the San Jose Rock and Roll Half Marathon.  It was my secret, I didn't tell anyone, not even Scott.  I decided I was going to fake feeling healthy until I made it.  I started running, just a tiny bit at first, but one foot in front of the other.  

Then in July 2014, looking once again where this all started, I tried a new gynecologist.  Despite taking lots of estrogen pills it turned out my levels were close to zero.  We tried a new approach and my estrogen levels climbed.  With each blood test my levels rose to more typical level for a 40-year-old.  My head hurt less and my energy rose.  I kept running, slow and steady.  

Now it is October 2014 and I am not cured, but I am so much better!!!  I still do my physical therapy exercises every day and I take Phenergan when I need it (strangely, that medication helps).  My bad days now are what my good days were back in December 2013.  Today, I ran strong and hard as a celebration of a positive time in a very long journey.  

I have held off writing this post until I felt more confident this wasn't yet another false hope.  Yes, I may revert. Today, I feel good.  Each day I feel well is a gift.  I am so grateful to feel better and am working hard to not take it for granted.  Today, I ran to celebrate my good health; Scott and the kids were at the finish cheering for me.  This race was a celebration for me and for them as well.  This has been their journey as much as mine.  Thank you!

That is life in MomZania.  

Monday, September 22, 2014

Parties, Playing, and Lots of Progress

 Mick had his 5th birthday last week!  I can't believe it.  It seems like we were just bringing our 5-pound bundle home from the hospital and now he is 5.  To celebrate such a momentous occasion, we hosted the (almost) mandatory Chuck E Cheese's birthday party.  The was too much noise, too few tickets, and rather poor pizza.  In other words, the kids had a BLAST and it was THE PERFECT 5-year-old birthday party.  To make the occasion really special, Nana flew into town for the week.  She is flying home now and we already miss her.  It was a great visit.

Let the soccer begin.  Mick hit the field this weekend for the first time.  I don't think the San Jose Earthquakes are ready to sign him for their 2030 roster, but Nana was impressed with his moves.  More importantly, Mick had a great time.  All the scoring and competing will start soon enough, this program is just about learning to have some fun on the field.  It is completely laid back, just my type of soccer.

This is our house!!!  Yes, that is daylight in every direction.  We are "all in" on our renovation, there is no turning back now.  It took 5 days to tear the house apart.  It will take 8 months for all the king's horses and all the king's men to put our home back together again.  With construction in full swing, I am racing around trying to pick out everything for our house.  I am currently surrounded by samples from the floor to the roof and a million things in between.  I have been learning about things like sewer lines and shingles and concrete footings and excavation.  It is going to be a wild ride, but come next summer we should have a new home (fingers crossed).

That is life in MomZania.

Friday, September 5, 2014

Another Hilarious Move for the Family

Here is how it is supposed to go on move day.  Load your junk, drive it to your new place, unload your junk, and crash into bed that night exhausted.  That is for regular people.  When the Harrell's move, it never follows the script.  Instead our moves are hilarious chaos.  True to form, our recent move had a slew of hilarious moments.  Here are the top six.

First, this sure wasn't a corporate move.  Since we were on the hook for the bill and were only moving one mile, we (I) decided to save the money do much of it ourselves.  With the help of our free child labor and our trusty red wagon, we schlepped as much could.  Nothing was properly wrapped or even boxed for that matter, but we managed to get much of our junk over the rental.  We only called in the professionals, when we couldn't fit it in the minivan anymore.

Second, we need to work on our scheduling.  Self-moving had left us exhausted before move day arrived.  Then, problems scheduling forced us to book our move the first week of school. Who does that?  Heck, we were at meet the teacher night until after 9pm the night before.  Then, Comcast, with all their crummy customer service, came in and made things worse.  They forced us to switch our cable/Internet on the exact move day or wait 3-weeks with no service.  Scott had to babysit the empty new house for 5 hours waiting for the cable guy, who of course arrived after the scheduled window.  Despite all of our scheduling mishaps, the first half of the move went fairly smooth.  In fact, so smooth, the movers were determined to finish in one long day instead of two short ones.

Third, add a little spice to your move day with a trip to the ER.  With hard-working movers quickly started emptying rooms as I ran around trying to scoop up everything small we had missed. Out went the dining table and in I came, right into the heavy glass light fixture over where the table used to be.  How did I forget that was there?  Crap, that really hurt.  Then, I kept bustling along until I saw the look of horror one of the movers faces.  I had split my forehead open on the light.  A quick glance in the mirror revealed a trip to the ER was in my future.  I called Scott and screamed, "[Expletive] Comcast has to finish up now, I'm bleeding down my face!"  He came home and off to the ER I went.  Lucky the cut looked worse than it was.  I was home in just 60 minutes (probably a World Record for the ER).  A little Dermabond and a bit of a black eye, but mostly good as new.

Fourth, the kingdom was lost for lack of a screw.  As two of the movers made a trip to get the last few things at the old house, two guys stayed at the new house to assemble the beds.  That is until they realized the screws to our bed were missing.  After 30 minutes of looking, it was time for a trip to Home Depot.  With the store closing just a few minutes, it was a mad dash to get to the store.  Luckily Scott was behind the wheel and he drives fast.  Just in time, he and the movers grabbed the screws as Home Depot locked the door behind them. We were going to have a place to rest our head that night.

Fifth, after 11 hours of moving the truck will give up.  Here we were in the home stretch.  As the 9 o'clock hour approach, the guys loaded up the last few things by flashlight.  All that was left was a one mile drive and a few things to empty, when the truck died right in the middle of the road.  Now instead of finishing the move, it was time to call in a big tow truck.  As the 11 o'clock hour arrived, off went the broken down truck along with the last of our stuff.  We were so tired, we really didn't care.  Luckily, those last few items were delivered the very next day in a different truck, by the same team men who had worked so very, very hard the day before.

Sixth, nothing says housewarming gift like a sewer back up.  Yup, the boxes were still being unpacked, when the sewer backed up.  Just like our Easter Sunday sewer backup, it was once again on a holiday weekend. Once again, the nasty stuff was bubbling up in places it shouldn't.  Once again, we were forced to tinkle in the lawn until the plumber could fix the problem.   Happily, once again, it is fixed.  There are some more plumbing repairs to be made next week, but we are back to flushing toilets and running water.

As I write this, I have repair people working simultaneously on the washing machine, the ant problem, and the furnace.  The good news is by the end of today, we hope to have a fully functioning and pest-free home. As an added bonus, this is a rental, so we don't have to pay the repair bill. That is good news.

That is life in MomZania.