Desperate times…

I took the knee scooter to the mall.

I brought my husband.  Well, technically he brought me.  And he lugged the giant contraption down the stairs and into the back seat of our “big enough for most things, but not this thing” Sonata.

The screen on his iPhone had cracked and he needed to go to Apple.  I needed an outing worse than a puppy who has been crated too long.

He dropped me off at the door.  He rode the scooter through the parking lot to meet me.  Apparently, like so many other things, its a LOT more fun when you don’t need it.

I laughed in spite of myself at the sight of it.  I was also glad our teenager had decided to stay home.  The sight of it all would have likely been just too much.

People stare right at you, while simultaneously judging you as you drive this thing.  The local mall lacks the tolerance of Disney World.  In fairness, from face on, it looks like you’re using wheels for fun.  It’s not until I have passed, if they bother to look, that they would see the giant walking boot resting on the knee pad.

Today is 8 weeks and 1 day since I’ve been “booted” again. 57 days.

I have had more surgeries in my life than I can count.  Not a single one of them kept me down for 8 weeks. This foot has been messing with my life for over 8 months.

Double Mastectomy – back at work in 5 weeks.

Hysterectomy – back in 2 weeks.

I once had arthroscopic knee surgery over a long weekend, and was back on the 4th floor in my classroom the following Monday.

Vascular, over the February break…

Biopsies, a day tops…

We always say recovery pain is the best kind, because you know it’s going away.

And yet the answer to “Does your foot feel better?” still remains “Not really.”

My kind and compassionate local podiatrist, in a combination of frustration at the injury that won’t heal and my insurance company making it harder for him to treat me, has advised a visit to Hospital for Special Surgery.  I’m sitting.  Foot up, phone in hand, waiting to try to schedule.

I rode that knee scooter all over the mall.  I rode it into the grocery store too.  Quite simply, I’m tired of being locked in my house.  It is truly a ridiculous and ingenious contraption.

If you asked me 2 years ago if I would ever… the answer would have been “NO WAY!”

Except if I keep learning anything through these years of life with a rare disease, and also just life, it seems to be” never say never…”

I had a boatload of things I wasn’t going to do as a parent.  I’m pretty sure the first one was undone about three hours in… right after the anesthesia from that c section wore off…

Wasn’t going to… feed certain things, watch certain things, give certain things, etc. etc.  And then you find yourself learning that all the plans in the world are suddenly invalid as you just try not to damage the tiny human.

A great deal of my pride was left behind in the OR where she was delivered.

I lost a bunch more of it through a slew of breast biopsies prior to the double mastectomy in 2012.

The uterine biopsies, the hysterectomy, the “cancer screening” human exams took a bunch more.

And there are few things quite as humbling as a breast MRI of your silicone implants.

I was never “in fashion” but I used to take great care in what I wore.  Things were dry cleaned.  Stockings and heels were worn daily.

Then there was back pain that seemed only better in sneakers.  Coupled with a significant weight loss my wardrobe evolved into jeans, t shirts and sneakers.  May be a dig at my early judgment of “too casual” teachers…

Life, at it again…

If we are open, and able to be introspective, we are changing and growing all the time.

I am in a painstakingly slow process of relinquishing control.  

Control is really largely an illusion anyway.

Faith, trust, hope, and the ability to embrace what the future has in store, these are my current goals.

I’m a work in progress.

So if you see me and my knee scooter, be kind.  You may even see me up and down the block.  These are, after all, desperate times…

We’re done being caged up.  I need some fall air.  I am ready to get well.  Since my foot isn’t cooperating, I’ll start with my mind.

#beatingcowdens

 

 

Check in…

grass is greener“The grass is always greener…”  Blah, blah, blah.

One of those phrases hard to hear, yet typically true.

I woke for work so many days wanting an extra day off, to do nothing.  A break from it all.  A weekend escape.  Me time.  On my terms.

And here I am.  Not on my terms at all. Finishing my seventh week in the “boot” with no end in sight, and daily trying to be diligent about restricting my movement.  All in the hopes the foot will finally heal enough for rehabilitation, and a return to the daily grind.  Isn’t it ironic?

ironic

Seems to be how life goes  a whole lot.  A dear friend once told me, “You can have it all, just not all at the same time.”  Sage advice that I have frequently pondered through the years, but especially these last few weeks.  She stopped by and spent an amazing few hours helping to make some of the time melt away.

Someone sent beautiful flowers to my house last week.  They sat on my table and every time I rolled past them on my scooter I smiled.  Unexpected random act of kindness that lifted my heart.

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Someone sent me a text out of nowhere, just checking in.  The smile it gave me lasted for hours.

There is one who checks in to keep me involved in the day to day outside of what is currently a very small world.

Another sends me Instagram messages.  Simple Smiles.

check in

A dear friend stopped by with a bottle of Coke and left it in a bright pink bag on my porch.  She had taken the time to pick one up with my last name on it.  I try to generally be healthy, but a sugary real coke is often a weak spot.  She knows.  I will save it for a time when I’m really starving for company.  Maybe tomorrow?

I’ve been focusing as a chronically ill person would, checking boxes, and completing a variety of appointments that are necessary for the management of Cowden’s, yet sometimes interfere with my work day.

I’ve cleared a cardiology intake, and can now hope I need nothing more than an annual drive by.  I have “stacked” several appointments for Meghan on a Monday in January.  It will cost me the day (in my optimism that I’ll be there…) but it will save us a world of trouble going in once instead of three times.  I have filed claims, copied, faxed, sorted….

Meghan got 2 wisdom teeth pulled Friday, right in front of a 4 day weekend from school.  I’ve set her up with a new eye doctor for her annual screen on Election Day.  The eyeglass forms from the Union are on my table.  Felix and I need exams as well.  I’ve spoken to pharmacies, stayed on top of prescriptions and supplements.

6 month dermatology screen for both of us next Wednesday.

I have a few projects, a few things I hope to get focused on.  But, I am easily distracted.  And I am focused on my apple watch, and my step count, which I have been instructed to keep painfully low.

There are some nights, after using up my steps at any of the above appointments, that I’m stuck in my bed pretty early.

I have an app on my phone that has me reading the Bible more than I have done in far too long.  I love the way the books are illustrated in drawings first.

I also have an app that I can waste hours on bouncing bubbles.

I’m up to date on the DVR.  I watched “Diagnosis” on Netflix.

I’ve been researching some alternative pain management.

There is always a way to stay busy.  There is always something to research, to sort, to shred.  There is ALWAYS a way to better yourself, regardless of the restrictions.

What I don’t do is pick up the phone.  I don’t really reach out.  I’ve been battling for quite some time, and I work hard staying afloat. I get the job done, and I always will.  Failure is not an option.  Becoming a completely isolated introvert however, is.

It’s hard to reach out when you’re struggling.  I do my very best to broaden my senses and put small gestures in the direction of those I know might be having a hard time.  Just because you haven’t heard from them, doesn’t mean they wouldn’t love a check in.  In this technology world where its so easy to say “I’m thinking of you…”  We should all try it more.

It’s not about grand gestures.  It’s about knowing you’re missed.  I’m not always as good about it as I could be for others. But, I’m working on it.

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That starts now.  Because if I feel this way, other people do too.  And if we can all check in and share a smile in whatever way we know how, it will make a difference.

And right now, I’ve got plenty of time, anxiously trying to heal this foot while…

#beatingcowdens