Sunday, July 29, 2012

The Dark Side

There's a place that I know
it's not pretty there, and few have ever gone.
If I show it to you now
will it make you run away?

Or will you stay?

Even if it hurts,
even if I try to push you out,
will you return?
And remind me who i really am...
Please remind me who i really am.

Everybody's got a dark side.
Do you love me?
Can you love mine?
Nobody's a picture perfect,
but we're worth it..
you know that we're worth it.
Will you love me?
Even with my dark side?
~Kelly Clarkson

I'm a pretty strong person.  I haven't always been that way.  But trials and just plain life has molded me into who I am.  Lately, sometimes, I get told how strong I am by other people, and I get told how "inspiring" I am that I can keep the faith during times as hard as these.

And sometimes I partly agree with those people.  Sometimes I marvel how I keep myself walking upright, and I think how much strength I have to function and keep the family strong and happy during times like these.

But as much as I don't want to admit it...I'm not always strong.  And today especially, I feel so weak.  I feel like the world sits on my shoulders made of glass, and at any moment I will shatter under the pressure. 

I know a lot of the time, (maybe even all the time,) Ryan feels this way, too.  He doesn't always articulate it, but I know that we are living our lives on the fine line of pretended normalcy and complete chaos.

Last week's bad news was a punch in the gut.  Ryan's meds aren't working anymore.  The tumors are growing.  We were moving forward at a good clip and now we have lost our footing and have to find our momentum all over again.

It isn't easy.

Part of me wants to crumble. 

Part of me is questioning everything. 

Part of me is really angry right now. 

Part of me is so scared it is literally paralyzed.

Thankfully, the greater part of me is staying strong.  It is continually nursing my weaker parts, encouraging myself to keep the faith.  The greater part of me believes in miracles, and angels, and that some things are meant to be.

For Ryan and I, one of the harder parts of all this is not being able to articulate our fears to one another.  I told Ryan the other day if he just needed to tourettes syndrome out all his fears and anger that I can take it...let it out.  He gave me a smirk and said, "I'm okay."  And instead of lamenting of what could be, or how completely scared out of our minds we are...we talk about how blessed we are.  We talk about how despite it all...we have each other and four amazing boys.  We talk about the undeniable feelings we have had in the past telling us that all will be well.

We talk about our faith.

We all have a dark pieces.  I don't know if it takes up an entire side of us...but somewhere in us lay the dark days...the sadness, the bitterness, the loss.

But just because I have a dark day, or a dark week, doesn't mean all is lost.  It doesn't define who I's just part of the process.  I've felt a lot of guilt the past couple days...guilt that I'm faltering and not the pillar of strength that I need to be for my husband, or my family, or my God.

I like to think that it is normal...or at least I hope it is.  When one is punched in the gut with bad news, one steps back for a moment to catch their bearings, right?

I'll fell better soon...and when I do...I'll be stronger.  I know it.  I'll tell the dark side to take a long walk off a short cliff and the only thing left will be my faith.

What other choice do I have?  Can I let the dark side win? 

Hell no.

You all are so kind to me.  I know many of you are saying to your screen, "Meri, be kinder to yourself!  It is ok to have bad days for crying out loud!"

And my response to that is this...

It goes both ways.  Can't you be kinder to YOURSELF too?  It's ok to have a bad day, a bad week or a bad month.  True strength comes from overcoming the bad days...not from pretending they don't exist.

This post is my small way of taking my own advice.

Thanks for the prayers by the way...I know they are part of what keeps me upright each and every day.  They make me stronger, and that is a blessing for sure.
(PS  I don't know why my font got suddenly bigger mid-blog, mid-sentence.  And now this PS is even bigger...I'm too exhausted to figure out why.)

Saturday, July 28, 2012

The Diabetes Detour... Where am I, again?

One of life's many reminders that
 I am not alone, with diabetes.
"Who are you?," I asked, as strange and odd faces peered over me, picked me up and placed me on a stretcher. "What am I doing here?"

No one answered.

The world felt really odd, and weird. My head, compressed and pained, while my vision was at odds with my mind... as if I had put on a pair of someone's prescription glasses many times more powerful than my own vision, and making everything in sight oddly concave.

"She keeps saying that!" said the voice of a red headed woman with too much eye make up, in an exasperated tone, and incredulous that I could not remember who any of them were. Funny, I thought I'd only asked once. The attention was unnerving, and frightening... and their annoyance was oddly embarrassing. I really wanted to get out of there, and go home... If only I could of remembered where home was.

On October 26th, 2007, I had a massive seizure at my desk, at work... Or so they tell me. I can't remember when it started, or what provoked it... I can't remember much of anything about it, or that day, for that matter.

All I can remember is laying in a hospital bed, in a medical gown and no underwear, under the gaze of my former Human Resource Manager, and trying hard not to look like a woman who's not wearing a bra. He was a brutish man, with a hot temper, and little human resource education. It's the way of the world in some of these up and coming companies. You get to be buddy-buddy with the head honchos, join the good ol' boys club, and then it doesn't matter if you have any qualifications for a job. His way of qualifications was a 6 month stint as temporary HR manager back in 1984. (Yes, you can laugh out loud.)

... And so it was that a company who sold out to a much bigger company, coincided with a production foreman (wise in the ways of verbally intimidating employees) being made into an HR Manager (a position which requires extreme diplomacy), and me... developing extremely debilitating, and uncontrolled type 2 diabetes, with no one knowing what it was, at the time.

It was a perfect storm, really.

They needed to cut down on employees... and I got sick. I was a good target. We all knew they were going to cut SOMEONE. They kept having all those 'behind closed doors' meetings. And no one knew what I had at the time, so I got to be made to look like a mediocre employee who just wanted to play hooky and not show up to work. A great way to cut staff (and I made quite a bit of money, in my position, so it was quite the savings for them, I am sure). They had already tried to intimidate me... by demoting me, claiming I was unorganized, and had made many mistakes. (It didn't matter that, when I asked, they had absolutely no examples to provide to back up their assertions, other than my illness related absences, which had been closely monitored by my doctor... nor that a few months earlier, they had given me perfect praise... nor that my previous review had been above excellent.) They wanted to break ME as a person, and get me to quit. They wanted to treat ME as worthlessly as another unskilled production employee.

So, I had a seizure. It was on a Friday, and I spent a really ill weekend at the hospital. Went home on a Sunday, with a very chewed up tongue, migraines and dizziness issues... And when the HR Manager demanded I be at work on Monday -- but couldn't do so, for obvious reasons -- he fired me. The company NEVER contested my claims for unemployment insurance; they never even showed up for the hearing.

I can't tell you... HOW MUCH I have blamed myself over the years. How much I have felt like a worthless person who just couldn't keep running as hard as she could, who couldn't just grin, and bear it. Still, to this day, I sometimes have many nightmares... sometimes reoccurring dreams where someone calls me, 'forgives me,' and just gives me back my job. I loved my job. I loved making a difference. I loved making people smile with my organizational skills, and my programming skills, and my language interpreting skills. I loved interviewing new hires, and giving new employee orientations, and speaking to big audiences... I loved educating, and writing, and speaking, and everything I did. I had been promoted to a better position within 4 months of hire, and given hefty salary raises for my skills. I had dreams of further certifications, promotions, and continuous education degrees. I LOVED MY JOB. I loved my life. 

For many years I felt like I lost my soul on that day. I lost my soul, and I let myself go. I let myself go, and felt like I died. Long, lost, and forgotten... someone who forever had ruined her life. I felt great shame, and hurt. Great anger.

Diabetes came into my life with a BIG bang, and like a tsunami... washed up many parts of my life with it. Great post traumatic stress took over, and made me shy away from new jobs, job situations, and new friendships. Finding a job, a permanent one, and keeping it... for the last 5 years has been HARD. I wanted to cry and wallow in self pity.

Diabetes is HARD. And it's often embarrassing. And people JUDGE you. They do. People DON'T understand. People think their lives are textbook examples for how other people's lives need to be. They judge you, and they often try to bring you down.

But you get up. You get up, and pick up the pieces of you... as many times as you need to... and you keep going.

I now work minimum wage. I don't do anything near as glamorous as I once did. I have two jobs. I work unloading trucks, and at a fast food place. I don't even have a car. I walk long and far... just to make minimum wage. But I am... OKAY. I'm OKAY, and I am even happy, sometimes. Heck, I'd say most of the time.

My bosses don't really get diabetes... but they LISTEN,  and they try to understand, and try to help me be safe at work, and make concessions. My coworkers LISTEN, and they care... My bosses let me be ME, with diabetes. They let me be ME, in spite of diabetes. Sharing with coworkers the other day, and even opening up about my traumatic past, really made realize... that it's OKAY. That I can move on. THAT I AM SAFE.

Sometimes, some of those people I used to work with at the Human Resource job, show up for lunch at the fast food place. They seem to look down upon me with a certain pity in their eyes, or with embarrassment that I am doing a fast food job, and I just smile kindly back to them. I smile because I'm happy, and they don't understand my journey... and I hope they NEVER have to.

I smile... because though I loved, and miss my job... happiness and freedom are not found in jobs, nor what people think of us. They are found in those 5 year detours in the desert... when all you have is YOURSELF.

(... And, ironically, the original founder and owner of the company passed away, not long ago, of type 2 diabetes complications. I may have lost my job, money, insurance, etc... but I guess at least I still have my life... and boy am I LIVING it.) 

Wednesday, July 25, 2012

Let it be.

Let it be.

Let it happen.

Let it alone.

Just BE.

My husband and had the rare opportunity to have dinner with some friends in the city.  On the way home the sun was setting and the Bay Area glowed in yellow haze, carpeted by reflective pools of water. 

Almost intuitively the radio began to play "Let it Be" by the Beatles.

The words pierced my heart.  I tried to internalize exactly what they meant to me.  To us.

Let it be.

Let it in, Let it happen?   Life doesn't stop for anything.  It is a crazy ride and when something big shakes up our world my first instinct is to think, when will this end?  How long must we endure?  Maybe I need to step into the calmness of "letting it happen."  These hard moments are changing us, and someday I'll have the benefit of hindsight to see what miracles were wrought in our life.  Someday I'll be wiser and the bigger picture will be clearer.  Instead of punching mindlessly at the storm...maybe just acceptance is what I need.  Storms blow through, and they are scary.  But it waters our fields and the rainbow follows.

Let it in, let it alone?  Sometimes I let the question creep in.  Why?  There is no answer to why.  Why is only there to make me miserable.  There is no strength in why.  Why is there to take my mind away from the things that are really important, like my blessings.  Why wants to preoccupy me with its time so there is no room for anything else.  Why is extremely needy.  So leaving it alone...alienating the why may be my only option right now.

Let it in, just be?  Just LIVE.  Make the most of every day.  Enjoy all of the little moments.  I read a quote the other day that said happiness is not in the destination, but in the journey.  I can't look ahead and say, "someday this will be over and then we'll all be happy."  That isn't fair to my family, and not fair to my soul.  I/we need to find happiness in today. 

A few days ago our family received a miracle.  My husband who has been suffering from nausea, exhaustion, pain and weakness, woke up last Thursday and said, "I feel amazing."  For the first time since his diagnosis Ryan feels "normal."  He can eat again.  He has energy again.  Gone are the days of two naps and constant misery.  He can sleep well at night again.  It's like we've all woken up from a coma.  How long will this last?  I don't know...but we'll enjoy each wonderful day we have...and "let it be."

Yesterday when I was up all night with a rouge 400, the words echoed in my swelly brain...."let it be."

Today when the boys had breakfast and then an hour an half later ate again at Costco, (because apparently it's sacrilege to NOT eat a hot dog when we're at Costco,)..."let it be."

And tomorrow, when Ryan has another diagnostic appointment to give us results of yet another chest scan..."let it be."

It's sticking for a reason.  If diabetes has taught me's that acceptance is the fastest way to happiness.

"And when the night is cloudy, there is still a light that shines on me, shine until tomorrow, let it be." ~The Beatles

Monday, July 23, 2012

When numbers take over the night.

Deep in the nighttime when children are dreaming,

When parents are snoring and resting their minds.

The numbers march into our homes never failing,

And dictate the peace that our bodies will find.

A wave of emotion they bring with each blinking,

The numbers they know how to hurt and be kind.

They bounce up and down like a young child flailing,

And soothe us to sleep with their one hundred and nine.

When we dose we are hopeful that we are securing

A strong healthy number to keep the calm night.

But that number will turn when we're least expecting,

No choice but give up our sleep for the fight.

Some numbers are brutal, they'll fight until morning

taking bits of our life 'long the way.

With lows taking pleasure in seeing us foraging

for carbs to keep crueler numbers at bay.

And the highs with their clattering,

They joy in the panic of our worrying about insulin on board.

Our hearts work with resolve to keep up their pattering,

But our sanity falls on the sword.

The numbers they are forever weaving

their quantities into our heads.

There is never a night that we are not dreaming

of meters with dots crimson red.

On those nights that the numbers cause up their stirring,

We hold our breath:  Three.  Two.  One.

And keep in check emotions that surely are surging

To prove to these numbers, we've won.

Because life marches on, the numbers will shift,

The one hundreds sympathetic to our plight.

Peace always returns...there's an end to the rifts,

When the numbers take over the night.

Saturday, July 14, 2012

Holding on by a bracelet...

Yesterday was a big day.  14 hours from beginning to end at the hospital for Ryan's Gamma Knife Radiation.  As thankful as I am for the technology that will surely help my husband, I am so glad that yesterday is over.

It's hard to explain what feeling helpless is like.  It mentally hurts so much that your body viscerally responds to it.  It is an aching anger that comes from the gut, and a quiet hurt that haunts your heart. 

Needless to say, feeling helpless is not my favorite.

One would think I would be used to it.  When it comes to diabetes I often feel helpless.  But when you see someone in front of you miserable...that is a different story.  My boys are very rarely miserable.  They are happy and busy kids.

But cancer is a totally other animal.  Yesterday we had to look that cancer in the eye.  We had to let it take over our day.  We had to let it hurt.


Many many hours of waiting at the hospital, I set my focus on my wrist.
(The orange FFL bracelet fell off a couple days ago. Super sad face.)

I read these words yesterday a thousand times:  You can do this.  And, COURAGE.

The You Can do This bracelet taken from Sara's wrist and put onto mine during Richard Rubin's Diabetes Overwhelmus course at FFL.

The Courage bracelet given to me in a tender moment from Wendy, another mother who is like a sister to me.

And in the palm of my hand I held the third bracelet, also given to me from Sara.  It is a cancer awareness bracelet with a heart inscribed:  Together we can make a difference.

I was able to take all the love out there and bring it all to one place.  And to be honest, I drew strength from it, and it helped.

One of the most important lessons I've learned from this journey so far is:  small gestures make a big difference.  Most often it isn't the grand things that are needed but rather a small token of love, a meal, or even a kind word.  We have been recipients of so many kind gestures and I'm ashamed to say I never knew.

I never knew that bringing a meal to someone who is having a hard time could cause them such complete relief.  (And really, it isn't a small gesture when you're cooking for a family of 6.)

I never knew that just saying, "I'm sorry, I hear you, god bless."  can heal a heart so.

I never knew that bracelets, probably monetarily worth very little...could be equal to the mansions in heaven for my soul.

I never knew that when  a person is having a hard time, just writing on their facebook wall or sending them a text or an email could make them feel BETTER, and lift them up out of the fog.

If you ever feel prompted to call someone, or text someone, or help someone...

Do it.

It makes all the difference in the world.

My surviving all of living proof that it is so.

Thursday, July 12, 2012

Raising Hell... One Ice Cream Scoop at a Time

Last year, a certain man writing for his local newspaper, took advantage of the health struggles faced by people with type 2 diabetes to push his OWN agenda: Food Alarmism. In it, he claimed folks with type 2 diabetes were like alcoholics, who needed to be kept away from all sugar, and be on a fruits, vegetables, and grains only diet. 

It was a very hurtful column, not just for type 2 diabetics -- who get BULLIED constantly because of the massive amount of assumptions and misinformation in the news and media, but it also hurt type 1 diabetics as well. In his post, the man became indignant because the local type 1 diabetes organization in his community was having an ice cream social to generate funds so they could send some children to diabetes camp, and he confused them for type 2s. Not only did he wrongly confuse type 1 children for type 2 patients, but he also tried to be our food police! These kinds of strict views on food are the views that often lead to many eating disorders, and poor self images. Diabetics world wide were enraged, and responded swiftly against this level of ignorance. Soon thereafter, the newspaper took his columns down.

It was no surprise to me to find out he was a "Chef, Motivational Presenter, CBS Host, and Syndicated Author." It's always this type of 'persona' that want to stir the pot. He needed READERSHIP, and MONEY! And what a way to do it, than with food alarmism. 

Food Alarmism is becoming more the rage these days, what with the credible threats of pollution, pesticides, GMOs, cattle hormones, etc. There is no doubt that we, as consumers, need to become a little more discerning with what we put in our bodies, and be more mindful of moderation.  

The problem is that food alarmists feed on our constant food insecurities. They are like any intolerant religious zealots or fundamentalists: they leave NO room for anyone else to live life, or their diets, differently... PLUS they want to make money off of you. They feed on YOUR 'concern' and 'fear' and your desire to be 'healthy.' Then you go around recruiting OTHER people with your genuineness, and bring them over to their side. They can be just as bad for you, health-wise, as the fast food industry we so want to attack. They also love to claim they have the all the aswers, and the science to prove anything... taking advantage of those who aren't savvy enough to recognize junk science when they see it. Small studies with minimal results, studies with inconclusive results, studies done by organizations with biased interests, studies where little is known about the population groups used, or research promoted by people trying to sell you something, etc, etc. People regularly flock to 'The Doctors,' 'Dr. Oz,' 'Dr. Hyman,' and 'Dr. Mercola,' for their daily dose of alarmism. They DON'T care about how you felt better thanks to the placebo effect, when you took their supplements; they care about the $60 you spent on their supplements, or their books.

So, last year... intent on proving that we, diabetics, can control our own diets -- in MODERATION -- and that we do NOT need to be policed, or be on diets of just fruit, veggies, and grains only... I set out to create the first online, and worldwide, Diabetic Ice Cream Social.

I just got tired of people telling me what I can, and cannot have. Writing articles giving license to others to police, or bully me, or using their OWN fears of food to control my life... or assuming I'm a lazy slacker, or a person with a bad diet, if I choose to have a treat, once in a while. Over 2,400 people responded in support... and yes, I'm going to do it again. We need freedom to mind our own lives, and our own illnesses... without busybodies out there pushing us around as to what we can/can't/should/shouldn't eat. 

I've been criticized left and right this week, by a few who are against my social: 
  • I'm irresponsible, and promoting gluttony (a moderated portion of ice cream hardly classifies as gluttony);
  • I'm irresponsible and not promoting good eating habits (excuse me, moderation is a GOOD eating habit);
  • I should instead write letters to editors, and just attack the problem directly (we can all raise awareness in different ways... but perhaps YOU should write the letters, instead);'
  • I should be holding a 'marathon' or a 'walk-a-thon' instead (why? so that a lot of people aren't able to participate, because they have mobility issues, or neuropathy?) 
  • That I am increasing the type 2 diabetes epidemic (surprisingly, this one came from a type 1 diabetic who should know eating a scoop of ice cream is not going to give ANYONE diabetes.) 
  • That I am wasting my time, and instead I should go around collecting insulin to give to needy diabetics (ummm... how about YOU get off your behind, and collect insulin? If it needs to get done, DO IT... don't accuse me of not doing it! Do what YOU have a conviction that needs to happen.)
So... controversial as it might be, because of these reactions and more, I am convinced -- more than ever before -- that we NEED this type of awareness. Going around lecturing people on how sugar doesn't cause diabetes is not the most effective way to do it... Teaching people that moderation is what makes LONG LASTING healthy habits, and not just crazy, restrictive, fad diets -- IS. 


My numbers after last year's ice cream social.

Wednesday, July 11, 2012

Have diabetes, will travel

Four oversized swollen suitcases.

Four backpacks, one for each boy.

One large tote bag for me.

One carry on that looked like this.

We were ready.

As we made our way to the security lines at the airport I searched for the "family and medical assistance line."  When I found it I explained that I had three boys wearing insulin pumps and they couldn't go through the metal detector/scanner.

"Don't tell me...tell the next guy."

The next guy checked our ID's and waved us through.  He didn't want to hear it either.  "Tell the next guy."

As we arranged all our bags on the x ray conveyor belt, I explained to the gentleman standing there that three of my boys could not go through the scanner.

"That's ok...just have them walk through here," as he gestured to the scanner.

"I'm sorry, their insulin pumps could break.  They'll need a pat down. They are not walking through there."

He gestured again..."No, it is ok...have them walk through here." 

"I'm sorry, they can't."

He was frustrated now. "I've never heard of this before.  Never."

"I read on your website, they have the right to request a swab or a pat down.  They are not going through that scanner.  I can't risk it."

"OUR website?  The TSA website?"

"Yes...YOUR website."  I answered as I fumbled through my paperwork looking for the section I printed out just in case I was questioned.

I pointed to this section that I had highlighted:

"If you are concerned or uncomfortable about going through the walk-through metal detector with your insulin pump, notify the Security Officer that you are wearing an insulin pump and would like a full-body pat-down and a visual inspection of your pump instead." ~TSA website/hidden disabilities/diabetes

He glanced at it impatiently.   "OK, I'll call security."

A few minutes later three very large, very seriously looking Samoan men in uniform came to gather the boys.  I explained I wanted to stay with them at all times and they said no problem.

It was quick and efficient.  They gave J a swift half hearted pat down and had the two younger boys touch their insulin pumps and then swab their fingers. 

Five minutes and we were ready to go.  Except for the initial conversation, everything ran pretty smoothly and efficiently.

Florida on the other hand...well they are a little more militant about it all.

Returning home was a bit more complicated.

It included a long conversation with the guy at the scanner.  He wanted the boys to go through the new full body scanner.

"I'm not familiar with the technology.  I don't feel comfortable with their pumps going through there."

Honestly, I had no idea if it was ok or not...but my gut said it wasn't.

The TSA agent went on and on and on about how it doesn't have magnets and it was safe for the boys to go through.

I looked him in the eye and said, "We are requesting pat downs or swabs.  The boys will not be going through any scanner.  I know we have the right to request this, and we are."

He nodded and called security.

Three men eventually approached us and waited for a manager to join them before they began their work.  In Florida, it is protocol for minors under 12 who are searched or swabbed to have a manager there to witness.  J was whisked away.  They didn't ask if I wanted to witness, and I had to follow the littles that were taken in a different direction.  I found my husband and pointed two fingers towards my eyes and then pointed the two fingers towards J, signaling to Ryan to keep an eye on him.

They swabbed the littles hands and feet and shoes.  They swabbed my hands and feet and shoes.  Why I was included, I do not know.  I went through the security scanner like everyone else.  I found it interesting they didn't ask them to take out, or even touch their insulin pumps.  I'm not even sure they knew they were wearing them.  To make it less invasive for children, if they are under 12 they no longer do pat downs on them.

After a slew of radioed calls to the upper management they apparently did some kind of background check and then insisted on searching the boys backpacks.  The backpacks had gone through the scanner, but regardless, everything was taken out and swabbed to see if there was explosive residue.  Again, we were asked to wait for the final ok.  Another 10 minutes passed and we were given the ok to go.

While all this was going on I glanced to the other side of the room to see J.  Wide eyed, he gave me that look like, 'What the heck!"  Let's just say his pat down was very, VERY thorough. 

All in all it took a good 30 minutes to get through security in Orlando.

I want to say at this point I think the boys could have walked through the scanners and everything would have been ok.  I think MOST of the time nothing happens to the pump...but I have heard too many stories to risk having three pumps going haywire on our vacation.  When J flew to see my brother last year he didn't even tell them he had a pump and walked through the scanner and the alarm didn't go off.  On the way home it did go off because he had starbursts in his pocket and starbursts are lined with a foil liner.  Unfortunately, I know some people have had pumps completely stop working, and some stories of pump settings being completely erased.  I made sure to have all the boys settings written down before we left.  (Last year all three boys jumped into the pool at Disney and I had no idea what their basals or sensitivities were.)

The word is Animas pumps have metal inside, usually setting the scanner off, and Medtronic doesn't.  I think it has a lot to do with the setting the scanner is set at.  Some airports set the scanner to higher sensitivity than others.  Both pump manufactures recommend NOT going through the scanner, there's that.

I don't know what the right answer is, I just know in our situation it was better to be safe than sorry.

What helped us most was being firm in what we wanted.  Don't let them sway you...because they can be pretty persuasive with their permissive tones and crisp uniforms.  It is your right NOT to go through the scanner.  They can't say no. 

All in all the people with TSA were kind enough.  They are in a hurry and try to find a harried solution to get you out of their way initially.  I went to the airport expecting it to be complicated so I could be pleasantly surprised if it wasn't. 

It all works out in the still happen...the airplane still takes off...memories are still made...and that is what's important.

Don't let diabetes stop you from traveling.  You can do it!  And it is so worth it in the end!

Monday, July 9, 2012

Learning what it means to be a Friend for Life.

Sometimes life has a way of throwing us curve balls. Things happen that we don't expect and it takes the will of a thousand prayers to keep us walking upright.

Last week I was taken to the edge of my will. I pushed the envelope so hard I almost lost my ability to think in the process. Worry has a funny way of making you feel vulnerable and alone. Its easy to shut out the rest of the world and wallow in our own cave of misery.

I tried to do that on Saturday at the Friends For Life Conference.

I failed.

But first, a little back story...

We left for the Children With Diabetes Friends for Life Conference on Tuesday evening. We got to our flight no problems and settled into our seats excitedly. Well, most of us did. J sat there pale and shivering.

Was I expecting my 14 year old to have a wicked case of the chills as our plane took off? Was I expecting to stay up all night with him as the Advil wouldn't quell the heat of his fever? Did I expect to turn to Jeff Hitchcock for help to find an urgent care facility and then wait at the said urgent care facility for 5 hours to finally see a doctor for strep?

No.  Wasn't expecting that at all.

Did I expect to see lovely faces from the interwebz and hug them tight?

Yes, absolutely.

Did I expect they would encircle me with the love and friendship that they did?

To be honest, I don't know what I was expecting. But what I do know is the sincere kindness and love we were shown went far beyond casual Internet connections. It was more of a family reunion with people that don't know what it means to be artificial. They are real in more than just a tangible sense. They are everything they pour out onto their blogs, they are all the support they post on Facebook, they are every bit as fun and funny as they are in the twitter-verse.

Corny-ly enough, they are friends for life.

Did I expect to take Ryan to the emergency room in Florida?

Seriously, I didn't expect it...but I secretly feared it. 8 hours of waiting just to hear the doctor tell us his cancer has spread to one of his adrenal glands. The severe pain he was experiencing in his back came from a tumor that had bled, as melanoma tumors like to do...

And as word spread of our situation, people jumped at the chance to help. People from the DOC that I know and love...and strangers....STRANGERS who didn't know me.  They came out of the woodwork to drive us to hospitals and pharmacies, to feed us, to pray for show us what a friend for life really is.

We may all be different. We may have political views that are polarizing...we may care for ourselves and our families differently, but there is a common thread that connects us. That thread is love, and it is spun from the spirit of sameness and understanding.

As I sat encircled by beautiful people in the DOC offering prayers on our behalf, I sobbed deeply in a place that I haven't allowed myself to go in awhile.  And after I let myself mourn. I felt the peace return.  I know it is going to be ok.

It seems impossible, but when I was sitting in the emergency room with Ryan the phrase, "God can make a way when there is no way," came to my mind.  Over and over again.

I don't know how everything is going to be ok again, but I don't think it's my job to question that right now.  My job is to hold onto my faith...and my hope.

In between all the hoopla, we did enjoy a couple days of classes and bonding with friends.  I have volumes to write and I know it will be cathartic to get it all down on virtual paper.

To all my friends at Friends for Life that offered support and love to us...thank you. 
I love you.

To all of you that read my blog and send love, prayers and good thoughts or way...thank you.
I love you.

It is from your example I'm learning what being a Friend for Life is all about.

Monday, July 2, 2012

The Stepford Diabetic: The Most Frustrating Type of Diabetic

September 29th, 1985.

I remember I was with my dad, out in the country. My dad was a real estate appraiser, and often would go appraise homes or farms 2-3 hours away, deep in the Puerto Rican country side. I loved it. I put on my 'Tinkerbell' brand make up, and dressed up... and dad would let me take pictures of the properties. You got to see a different way life; farm animals up close, and the people were always so kind. Sometimes they'd pay you in fruit, giant bunches of plantains or bananas, or even legumes. Sometimes in animals, like rabbits.  (I came by a pet rabbit that I adored, this way.)

I don't remember the town we had gone to (it might have been Mayagüez), but I remember it was raining soooo much, and we had to cross the Añasco river bridge. You could see the river was really right up to the edge, and it was quite scary. Dad took a risk that day, and crossed anyway. We made it home, but many other people did not... Just a few moments after we crossed that bridge, the river took the bridge, cars and all. 

To say we had a tropical wave is to put it mildly. We always have tropical waves. No one bats an eye. Some rain, no big deal. Except... I have never seen another tropical wave like this, that wasn't - well -- a hurricane. No one was prepared. The wave didn't have a defined center, so it was never classified as anything stronger, and no one issued any warnings, or was seriously worried.

But on September 29th, the rain began... and it didn't let up. We had about 32 inches of rain in ONE day. By comparison, Oregon gets 37 inches of rain in a year, and Hawaii about 23.

The night was even more horrific. We had no power for a long time, and would listen to reports from a battery operated radio.

There were many awful stories, but (in my mind) the most traumatic story came from a man who was travelling late at night, when suddenly and by grace, he noticed the bridge was out. (Many bridges fell that night, and I can't remember which one this was, but I do remember it was a very tall bridge with a river raging below. The river had taken the bridge.) He stopped his truck by the side of the road, and tried... as much as he could, to flag and stop other drivers and keep them from plunging into the cold, raging waters. But he failed. People thought he was a lunatic, a mugger... a crazy person. One by one, he saw many cars plunging into the depths... No one cared to listen. They were sure of themselves, and their judgments of the man.

The scene... played out in my mind over and over. It gave me many nightmares. (I was only 8...) The chance were I, too, could have died... also played in my mind. It was an unnecessary risk. A foolish risk.

This is how I sometimes feel, when I work with people with diabetes who are not exactly knowledgeable, or in control of their care. I feel like a desperate person, trying to flag down helpless people... unaware they're an inch from losing their lives, because of their own pride. 

  • People with constant out of control numbers, thinking it's 'no big deal,' because they aren't 'as bad' as their previous numbers... or because they don't feel bad.
  • People not getting on much needed insulin, afraid of myths, and stereotypes, or for crying out loud, of a needle, and poking themselves. (I'd much rather be afraid of the horrible consequences of uncontrolled diabetes than some needle.) 
  • People who want to obey everything said to them by medical professionals, hook, line, and sinker... without much thought, or research; who stay on dangerous regimens, out of control numbers, and ineffective medications, or diets, because they're too afraid to say something, or seek a second opinion. 
  • People being lead away by 'miracle cure' nut jobs, or crazy fad diets, and supplements. 
  • People who won't check their blood glucose numbers, because their doctors said they didn't need to! 
  • People who just don't wake up... no matter how much you share with them, or try to guide them. 
  • People lacking in courage... to truly admit to themselves the seriousness of this condition. (Out of sight, is out of mind, I guess...)  
I know I can't police people, or change their minds... or tell them how to manage their diabetes, or how to tell when a medical professional is less than professional, or bad... or that they ought to seek more in-depth information about their condition. I know. But often, in groups, and forums... it sometimes feels like someone wants to start a conversation by asking you your opinion, and then not letting you have an opinion; telling you you're wrong... or just brushing you off. Or by bragging of their careless life. (Yes, there are occasional folks who brag about their out of control lifestyles... and not just occasional escapades, mind you, and bring down the whole mood of everyone around them.) 

As someone who has seen what it's like to die from ALL the most horrific complications of diabetes, I can't help but feel like that man, on the side of the road. I just do. Denial is a powerful thing... and I wish I could slap people right out of it. Uncontrolled diabetes (especially type 2 diabetes) is like a thief in the night; you don't hear it or see it coming... and one day, you've just been robbed blind. It makes some folks overconfident in themselves, and their lack of care. 

And these people... who want help, but don't want help. That is the MOST frustrating type of diabetic. And none of us can help them, medical degree or not, until they want to be the pilot in their care, and not the silent co-pilot. A Stepford Diabetic.  


You all have no idea how hard it was to keep all this in.  Secrets are HARD to keep!

Last year I entered the Once Upon a Time Contest sponsored by Lilly and Disney.  To enter, I wrote a short essay about our life with diabetes.  (Not easy.  It's no secret that short is not my forte.)

I found out in January that I won!  I won a trip for our family to attend the Children With Diabetes Friends for Life Conference in Orlando.  (This was before we found out about Ryan's it wasn't a pity win.  Or maybe it was. I do have three boys with Type 1, right?)

When we got the news in March about Ryan, we thought the trip wasn't going to happen.  Then Ryan said, "We are going to make this happen no matter what!"  So the game was afoot!  Ryan went through all his radiation and the doctors all told us it was a great idea to go!  Even with the one tumor that popped up, they were going to move things around so we could get the radiation done before we left on the trip.

And then last week...after I wrote my last blog post...we received more bad news.

More tumors have popped up, and some of the old ones have grown.  He now has nine brain tumors that need to be taken care of.  We were sent to UCSF to the head of Radiology Oncology. 

Last Friday we sat in the UCSF office on pins and needles.  We knew that we were there to schedule Gamma Knife Radiation.  But we didn't know when.  Would they do it the following week?  Would we have to cancel our trip for him to receive his care.  (Ryan first...trip second...we knew this.)  But miracles happened and mountains were moved and Ryan will receive the special radiation the day after we return.  When we asked if it was safe to go they said, "He can have tumors here, or he can have tumors's all the same."

So here we are...GOING TO FRIENDS FOR LIFE!   Are you reading these words that I am typing on the screen?????  It is happening!

Do you want to read my winning essay?  It is HERE.

And here is one of the press releases about our win HERE.

If you are going to #FFL12, please leave a comment.  I'll be easy to find...I'll be the hot mess with the purse that says, "HOPE."

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