Tag: fight

Unanswered Prayers

Published on by beatingcowdens1 Comment

Sometimes my unanswered prayers end up being what I am most grateful for.

Sometimes what happens is not what’s “right.”

Sometimes we can fight to change it.

Sometimes we have to stop fighting and move on.

Sometimes we have to consider that there might be a bigger picture we can’t see yet.

There are a handful of songs that have shaped me as a person. Among them is “The Gambler” by Kenny Rogers. Somehow the chorus has come into my mind at some of the most challenging times in my life.

“You got to know when to hold ’em,
Know when to fold ’em,
Know when to walk away,
And know when to run.
You never count your money
When you’re sittin’ at the table.
There’ll be time enough for countin’
When the dealing’s done.”

My life, sometimes my very existence, feels like it has been one fight after another.

I don’t mean aggressive battles among peers or friends. I mean battling “the system.” Whether it was fighting the limousine company that tried to change the contract 5 days before our wedding in 2000, (yes we walked away, got to the wedding in another limo, sued them, and won,) or health insurance companies that don’t want to pay for tests, procedures, scans, and surgeries Meghan and I have had, or doctors themselves who sometimes just don’t listen, the list of fights goes on and on.

I have a stellar record in this never-ending stream of confrontations.

But at what cost?

I sometimes worry my memory is failing. There are so many things I can not recall. I am sometimes comforted by the movie “Inside Out” and the notion of my brain making room for the things that matter.

The last decade has definitely been among the most formative of my life. Mom always said you do more changing in your 20s than in your teens. I’m not sure where that leaves your 40s!

Sometimes I shake my head in amazement at the journey that included removing a few organs between us, attacking a few tumors, hospitalizations, appointments, graduations, celebrations, and loss. Sometimes the loss hurts maybe more than it should.

I was lucky enough to arrive in my 40s with grandparents. Not many people can say that, and yet not a day goes by when I wouldn’t gratefully accept another one with them.

My father died in 2013, soon after I turned 40, and the ache from that loss, after we had so recently found each other is constant.

And that brings me back to “The Gambler.”

“You got to know when to hold ’em,
Know when to fold ’em,
Know when to walk away,
And know when to run…”

I’m not sure anyone knows Dad referenced that chorus in December 2013 in his VA hospital room when I was tasked with telling him his kidneys were shutting down in response to a cancerous tumor in his pancreas. He was so calm. I wanted him to fight so badly. I wanted to keep him with me. I wanted to scream. But he simply told me it was time. He had fought plenty in his life. And he had overcome. But, this time he knew…

School was not ever Dad’s strong suit, but he was a student of life. He knew the numbers, the stats, and the odds. He knew the reality of how his situation was going to end.

Unanswered prayers. Maybe they prevented things he never would have wanted. Maybe they were what we all needed. I am not sure, and I look forward to hugging him tightly again one day. But for now, the lesson of the value of those unanswered prayers is something he left behind, that I can call upon right now when I need it most.

I fell in January of 2019 in my classroom. I was teaching and a chair moved as a restless student changed position ever so slightly as I circulated the room. My feet did not anticipate it, I could not have seen it, and my left foot stayed on that chair while the rest of me hit the ground. Hard. It was one of those moments where I just knew things would never be the same.

I filled out all the accident reports before leaving for x-rays and MRIs. And, as so often seems to be the case, things got complicated.

My injury wasn’t properly diagnosed until March of that year, much later than I needed that diagnosis, as the damage done walking on a partial Lisfranc tear during those first 8 weeks proved irreparable.

I have fought for that foot on repeat since 2019. Surgery in 2020 did nothing to make things better. As a matter of fact, the addition of 3 screws, well, let’s just say the foot is unimpressed by their presence. And, the rock/ hardplace scenario continues as the surgeon told me removing them will make things worse.

A year of remote teaching did nothing for my foot, although that year, unanswered prayers brought me closer to some amazing colleagues, students, and families.

Teaching in person seems to accelerate things in the wrong direction.

I applied for accident-related disability retirement in 2021 and again in 2022. The denial that came this time, which follows a transcript of me being berated by a doctor who has never been in a classroom, shook me to tears on more than one occasion. The decision actually reads that the fall was not an accident.

I am pretty sure it is the textbook definition of an accident.

I was chastised for going to work. No one could explain how I should treat this injury if I stopped working and lost my medical coverage.

My foot is in never-ending pain. My left hip aches. My right knee is wearing from a constant subtle limp. Complex Regional Pain Syndrome is quite real if you ever wondered. Sleep is often more of a goal than a reality.

I should fight. I should appeal again. I should write a letter of complaint for the way this doctor handled me. I should. But, I am not going to.

I can’t fight this one.

And as many times as I have modeled for my daughter on repeat that she should fight with all her might, I am going to model this time, that sometimes you need to “… know when to walk away, know when to run…”

“If it costs you your peace; it’s too expensive,” and this fight is way over budget.

I spent a few years pulling back. The world has gone mad. The battle of #beatingcowdens alone is typically enough to keep me busy. In this post-pandemic and politically divisive country, I could not continue to be the additional heaviness in every conversation – so I stopped having them. I missed a lot in other people’s lives I am sure. But I think pausing to reflect on my own unanswered prayers, has put me in a better place than I was before.

People can judge all day about my new desire for some global and systemic ignorance. I know all too well that “knowing” is subjective and often solves nothing.

Unanswered prayers – well, maybe they are answered, just not on my terms. Maybe I just need to pause and think and shift perspective, no matter how hard it is.

And as a 49-year-old mom of one amazing young woman, wife to a seriously incredible human, a rare disease patient, and a cancer survivor, I have decided this battle for my foot has to get set free.

Who knows, maybe the answer came in forcing me to slow my roll and look around with more feeling and sincerity than ever before? The only speed I ever knew before was fast. I did not even know there were lower settings on the dial of life.

I have prayed a lot for the healing of my foot. I prayed a great deal that the medical review board would be compassionate and see the facts of my case. Both were not answered as I asked, but maybe they were answered in a way that was better or necessary.

In just the past few years I have spent a week on my knees as my husband, the healthy one, endured that week in the hospital battling Covid pneumonia. He came back to us, and our relationship, our central triangle has never been stronger.

I have prayed to have my child delivered back to me safely from more operating rooms than I care to count. I prayed fervently for Ella, Meghan’s faithful service dog, to arrive in time for her to transition to college. At college, both Meghan and Ella now flourish.

I have prayed extensively for things that I was blessed to see.

I have prayed for things that did not come to be.

I have prayed for peace, clarity, and understanding when things did not go as I hoped.

I have prayed for patience and wisdom, especially for things I can not comprehend.

And I find, on repeat, that when I sit still and really listen, I can find blessings pretty much anywhere.

I have come to wonder if maybe my unanswered prayers are just answered prayers I don’t quite comprehend…yet.

So, I am looking to take this life one day at a time. I am trying my best to make the world a tiny bit better and find joy in the little things. I am moving much slower. I am noticing things I never saw before.

And, remarkably, I am finding peace in this slow-paced gratitude.

Trying each day to be a better human, we remain…

#beatingcowdens

Romans 5:3-5

Difficult To Work With

Published on by beatingcowdens4 Comments

I am so tired of fighting.

All the time.

My Grandfather told me  many years ago that I was “difficult to work with.”  He said it with love.  I don’t remember the exact context.  I do remember it was said with a smile.

And he was undoubtedly right about that, like so many other things.

I had a boss a few years back that told me, “If you continue to hold everyone to the same standards you hold yourself to, you will always be disappointed.”  Strong words, but also not  inaccurate.

I am a lot to take.

I am intense almost all the time.  I have a mouth full of words that last long  past the attention span of anyone I strike up a conversation with.

I am passionate about things I believe in.

I make lots and lots of mistakes.  But, I truly do my best all the time.

So I just sometimes struggle to understand why it seems everything I touch or encounter is a battle.

I spend hours upon hours sorting through medical claims.  I look up who paid what, and when.  I call on bills that need to be refiled.  I take names on post-it notes with dates and times, in case things don’t get rectified.

I file out of network claims, and then I watch them processed in error.  I make three phone calls to try to sort out the change in policy, which was simply just a mistake no one will own.  I take names again.  I am told to wait 6 more weeks for hundreds of dollars owed to me to be reprocessed.  It’s only a little about the money.  It’s mostly about the notebook, and the folder with the copies of the claims, and the alarm in my phone to remind me when I need to follow up on the call again.

I send medication to the mail order pharmacy because we have no choice.  And then I wait for them to screw it up.  That sounds negative, but it’s simply accurate.  They have an entire notebook in my world to help manage the 9 mail away prescriptions between us.  There is a perpetual box on my ‘to do’ list which tells me to check on the progress of any refill.

I make appointments.  The list has 20 specialists between us.  They vary from twice a week to once a year.  A psychologist once told me not to let the appointments interfere with “preferred activities.”  So there is a matrix with the impossible task as the ultimate goal.  Except none of the 20 doctors know about the other 19.  Or the full time job.  Or the high school honor student’s schedule.  Or swim practice.  Or theater.  Or voice lessons.  Nor do they care.  And I get it.  They can not hear everyone’s story. So when I call to try to carefully place that appointment in a very tiny window of time, they are always unhappy with me.  They think I’m being unreasonable.  And maybe I am.  But, I can’t imagine why I wouldn’t TRY to get everything to keep her physically healthy and still let her be a teen.

I deal with unexpected schedule changes.  Like when I carefully stack 2 appointments in one day, and then one has to move to right smack in the middle of a week long summer internship that was planned forever ago, because now instead of two doctors with Friday hours at the same facility, one has Monday and one has Friday.  No overlap.  So I erase,  and juggle.  Except I’m not great at juggling in a literal sense, so one got cancelled and hasn’t been rescheduled.  Actually two… because summer can not be ALL about doctors.  Nor can every day off.  But, neither can every day at work or school…

“What do you mean you’re not going to reschedule today?”

So much of our condition relies on screening.  Early detection is a blessing.  It is the key.  It is also tedious and time consuming.  It is possible to be grateful and overwhelmed simultaneously.

So much of this is case management.  And, when last I checked my master’s degree is in education, not medicine.  But, with no one to coordinate care I have to guess a whole lot.  I have to decide if 9 months will be ok instead of 6.  I have to decide when to push the doctor for more lab tests when the fatigue won’t quit and the thyroid is ok but the spleen…eh, no one is quite sure about the spleen…

And there are doctor’s whose pride won’t let them return a call because I haven’t seen them recently enough.

There is the genetics appointment lingering again.  Because maybe Cowden’s wasn’t the WHOLE answer…

And the “normal people stuff”  like the seemingly never-ending root canals because my stress is played out in the jaw clenching that overtakes the episodes of sleep. That is on the occasions everything is calm enough for me to make it to my bed.

Or the foot injury.  The “rare” lisfranc ligament partial tear.  Close to 6 months later.  Not a soul wants to hear me tell the story again.  No one wants to believe that it still hurts badly enough that I haven’t take a real walk since last fall.  I’m not lazy.  I’m horrified by the state of my body in the absence of real physical activity.  I am trying to be patient.  My patience is running out alongside my sanity.

And the IEP.  Oh, the Individualized Education Plan… and the meetings.  Over and over and over again…  Meghan is on the waiting list for a service dog.  She has PTSD and generalized anxiety disorder.  The dog is coming.  The process is wearing me out.

I am a lot to take.

I am often “difficult to work with.”

I hold myself and others to a high standard.

I am intense most of the time.

I am tired.

I am so very tired of fighting all the time.

There is no choice though.  No choice at all.

So, in the mean time I will be here.  Strengthening my resolve.  I may bend, but I will not break.  I will continue to strive to show my girl that she can have a rare and currently incurable disease, while excelling at school, at sports, being active in the community, and being a generally decent human.

Last month we walked out of a screening appointment.  It was not critical.  It was an hour behind.  We rescheduled.  Also a valuable lesson.

I am tired of fighting, but I am far from done.

As my Grandfather said, I am “difficult to work with.”

I am also loved.  I am flawed.  I am also forgiven. 

 

When I have no more, I put my hands together and ask… and I am never disappointed.

Through God’s Grace alone we remain…

#beatingcowdens

25,000 – How did THAT happen?

Published on by beatingcowdensLeave a comment

I like math.

It makes sense.  At least to me.  There are questions.  And then there are answers.

I sometimes  often wish life could be a little more like math.

I am a numbers person by default.   I remember dates, and addresses, and phone numbers.

I used to be even better at it, but age and stress have clouded a bit of the clarity.

But, imagine my surprise when I checked in on my blog in the middle of this crazy week to find the stats telling me it exceeded 25,000 views!

25,000 blog views milestone - top injury law blog

I can not for the life of me – even loving numbers- imagine how that happened.   But it did.  And I am humbled and grateful.

Especially on weeks like this.

Where things don’t go according to plan.  And I have to be so careful what I say when the battles are too close to home.

I am tired.  So tired of fighting – all the time.

But you bolster me up, and give a reason to keep fighting,  so that Meghan gets everything she needs, and that I do too!

So thank you… and stick around.  You never know what will happen next!

There is always hope...
There is always hope…

Even on the days we fall hard!
Even on the days we fall hard!