Physical Therapy and Weaning Off of Pain Medicine

“Pain is such an uncomfortable feeling that even a tiny amount of it is enough to ruin every enjoyment.” – Will Rogers

My husband carrying me at the Vet School after my foot hurt too badly to step on it.

Weaning Off Pain Medicine While in Pain

This is my third time weaning myself off of pain medicine in seven months – exactly seven months.  I almost feel like a professional – if you discount the body aches, nausea, migraines, temperature irregularities, exceptional moodiness, and stomach cramping.  I have to say I thought this would get easier, but the truth is that every time gets harder. Continue reading

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Transitions: Becoming a Better Person

“The key to change…is to let go of fear.” – Rosanne Cash

Change:  The Only Constant

I am adverse to change.  No, I am terrified of change.  I’m so terrified of change that I purchased a year’s supply of hair dye and a three year’s supply of lipstick the moment I discovered my favorite shades were being discontinued.  Every season brings new trends and “it” colors.  The downside to fashion.

My first photoshoot with the magnificent fashion photographer – Greg Daniels

Nothing can alter one’s acceptance of change quite like chronic illness.  Since the beginning of December I have withstood more change than I have my entire life (though this isn’t much of a comparison since I have successfully shielded myself from it most of my life).  Immobility reigned December through May.  Hormonal changes caused by antibiotics appeared January through April.  I transformed into Sleeping Beauty February through April with the IV antibiotics.  I was plagued with a discolored (purple) foot April through June.

And I know there is more change to come.  What’s different this time?  I’ve come prepared.  I am more self-aware and am even almost comfortable with the thought.

So What’s Changed? Continue reading

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The Woes of Medical Billing

Errors, Errors, Errors…A Broken System

“There’s always something to be thankful for.  If you can’t pay your bills, you can be thankful you’re not one of your creditors.” – Unknown

Sometimes it feels as if all of the medical bills are suffocating me.

I can only hope I am the only person that experiences significant medical billing issues, but I am not nearly as naive about this as I am when men hit on me.  I naturally don’t pick up on their cues – regardless of how obvious they may be.  Time and time again I receive medical bills that I simply know are incorrect.  And I only noticed this once I finally completed my IV antibiotics and began entering “life” again (i.e. I was alert more than 2 hours a day).  And how about those lovely debt collectors for medical bills?

What have I learned over the last seven months? Continue reading

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Discovering Your Rainbow

The Hardest Two Years

I hear the old phrase, “When it rains, it pours,” a lot in my professional career. I even find myself asserting the same mantra when my steps forward only result in even more steps backwards in this journey called chronic pain. But after the storm, a rainbow somehow always materializes somewhere nearby. Sometimes it’s visible from your own backyard. Other times it’s a short walk away. But it’s always there if you look hard enough. My family’s rainbow is a bit more metaphorical. Three years ago today a part of a generous person arrived at my mother’s hospital bed in the late evening at MD Anderson.

Freshly delivered bone marrow being transfused into my mother – the only treatment for her Lymphoma.

Since my blog’s premise is learning to become optimistic in the face of significant hurdles, it’s important to celebrate the victories of life and to remember that with every great struggle comes great success. And today, that life – that victory – is my mother’s.

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Overcoming the Guilts of Chronic Illness: Cause and Care

“Guilt is anger directed at ourselves.”- Peter McWilliams

The Guilt of Cause

I remember when my mother was first diagnosed with Lymphoma one of our first questions was, “What caused this.” We demanded an answer – an exact answer, in fact. In the end, the only answer was far from exact: environmental. I can recall several times when my mom outwardly expressed concern that she had somehow caused the disease. When it comes to chronic illnesses, I think it’s normal to have retrospective moments – sometimes many – attempting to pinpoint cause. I think it’s also normal to find ways to blame oneself. And sometimes you know you were the cause…like me.

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Is It Really “Not Fair”?

It’s Simply Not Fair

Some days (if you haven’t noticed the pattern yet, when I say “some days”…I’m primarily referring to today) I find myself crying, “It’s not fair.”  And then I breathe and remember that no disease is really ever very fair…and then I cry, “It’s not fair,” one more time, sometimes more than once.  Yet, I am acutely aware that life, in and of itself, is not fair.  I preach it to my stepson.  I remind loved ones when they face significant obstacles or great heartache.  Why do I expect anything other than occasional unfairness?  Why do we, as a human race, tend to expect special treatment?  Instead, we (I) should remember to be grateful for what we (I) do have instead of pining for what we (I) do not.  And there it is again, that seemingly depressing quote from Grey’s Anatomy,

“…Maybe being grateful means recognizing what you have for what it is.  Appreciating the small victories.  Admiring the struggle it takes simply to be human…”

Renewing our vows on our 10-year wedding anniversary. Brian had to carry me down the aisle since I still couldn’t walk, and, as you can see from the white mesh, I was still administering five IVs a day.  Boy was it a struggle to get to this point, but my husband is a perfect example of what I am grateful for (despite his propensity for tardiness). 🙂

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The World is Full of Possible Impossibles

“No one ever gets far unless he accomplishes the impossible at least once a day.” – Elbert Hubbard

An Impossible Day

I’ll be honest.  I’ve called an obstacle impossible.  In fact, this morning I was absolutely certain that today’s obstacle was impossible.  My schedule:  a full day’s work followed by a physical therapy session.  Pain level:  6.  Six months after taking leave from work, I had an impossible day.

My place of employment recently moved closer to our house.  When I say closer, I mean only about three miles away.  I started my day like every other – late.  Lateness has only recently been acceptable, mostly because I’ve been relying on my husband to transport me everywhere and he’s not known for punctuality.  The reason for today’s tardiness?  I literally forgot what exit to take.  In my defense, the move occurred just a couple of weeks before my health issues.  The sting of impossibility.

A Possible Day

Me, at the end of the day just before I finally had the opportunity to take a bath.

As the day progressed, my brain fluttered at the opportunity to be challenged. Continue reading

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Mindy-Body Connections with CRPS/RSD: They Do Exist

The Big Day

These days there’s a lot to celebrate.  Even during times of excruciating pain, there’s almost always light somewhere just waiting for me to grab at it.  Sometimes it hides in crevices.  Other times it shines like a beacon right in my path.

My father-in-law and I celebrating the arrival of my first niece!

I can recall three separate times during this web of medical issues that I had been convinced a foot amputation would be necessary.  Yet, today I walk.  It’s funny how your standards for excitement lower over time, which really allows you to truly appreciate the small things in life.  Before now, I would have refused to celebrate anything but pain-free walking.  Today…well today I celebrate the God-given ability to walk regardless of the difficulty that each step brings.  My wound is slowly starting to heal, though not exactly in the manner that was expected.  I’ve long thrown expectations out the window and have learned to take each treatment one moment at a time.  Physical therapy has brought its own set of challenges, but I’ve managed to regain 17 degrees range of motion. Continue reading

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Navigating Through the Struggles…(Life is What You Make of It)

The Struggle It Takes to be Human

My husband (Brian), our three Shelties (Ava, Chloe, and Berkeley), and myself under the Century Tree at Texas A&M University.  Photograph taken by Rosalee’s Custom Photography

The beginning:  pain level 4.  This morning’s physical therapy session was challenging – I’m not going to lie.  I’m tough in therapy.  I execute each request, not always flawlessly but to the best of my abilities.  Pain may shoot through my body, but I push on…and I almost never cry.  For those of you who know me well, don’t laugh at the thought of the most sensitive person in the world not crying.  I transform into a different person during therapy.  Before I walk out the door, I grab my invisible “super” cape.  Let me take that back.  I envision more of a “super” sash, being the girly girl that I am.  I gain incredible strength – not the traditional physical kind but the emotional mental kind.  I can do this. Continue reading

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Shopping: Finding Your Passion

“We are shaped and fashioned by what we love.” – Johann Wolfgang von Goethe

Learning How to Revert to Normalcy

Everyone’s normal is different.  Sounds funny, right?  But it is so very true.  You cannot live your life comparing yourself to others because their normal is not your normal.  Compete with yourself for normalcy – not your neighbor.

Sometimes your normal changes.  As you experience life, you change – your body changes.  Sometimes those changes are unwanted, while others are exhilarating.  The key, for me, is to know your body and its limits.  Slowly, you can stretch those limits, but you must do so carefully to not extend yourself too far.  Occasionally these stretches may cause pain, which is why you should find an activity that you love while extending beyond your comfort zone.

Every day I walk at 1.2mph on the treadmill for two minutes at a time somewhere near seven times a day.  For three days in a row, I walked close to a mile and a half each day while shopping.  Sure, my foot was swollen afterwards, but I have accelerated the length of time it has taken me to re-learn how to walk.  The only thing holding me back now is regaining my full range of motion, which can be achieved through progressive stretching and walking.  I have also regained significant balance.

Me, featured in an Austin dog lover’s magazine – selling no other than…accessories!

Is shopping the key to unlocking normalcy?  No.  Nor should you overspend.  Window shopping is just as therapeutic.  But if you can discover something that distracts you from discomfort, pushing yourself to stretch those weary muscles and tendons, it sure helps. Continue reading

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Finding Hope: Not All Experiences are Equal

“The value of another’s experience is to give us hope, not to tell us how or whether to proceed.” – Peter Block

My mom’s bone marrow donor (Lou) winning Wheel of Fortune in December 2011.

How Do I Translate Personal Stories into Experiences I May Have?

CRPS of the Right Foot

The answer is you don’t. I’ve hinted at this in previous posts, but recent experiences reinforced this observation. Everyone experiences diseases and their treatments differently (whether natural or pharmaceutical). What I had not realized is you may experience the same treatments differently each time. Continue reading

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Walking: Painfully Awkward Moments

Baby Steps

“All truly great thoughts are conceived while walking.”  – Friedrich Nietzsche

My sister-in-law and I after I took a few steps without crutches to take a picture at her baby shower this past Sunday.

At my age, I see a lot of friends posting pictures of their babies’ first steps online.  I’ve never really pondered what those babies must feel at that moment, but I acquired a quick glimpse over the past few days after taking my first few steps without walking aids for the first time in nearly 6 months.  First, I was proud, but it quickly transformed into immense awkwardness as my husband practically jumped up and down after he witnessed the occasion.  Had the thought crossed his mind to video the steps (as I stood in my pajamas, covered in dog hair after spending the day shaving our three Shelties), he would have run to the camera and immediately posted the embarrassing visual display for all the world to see.  What you would not see in the video is the pain felt with each small stretch of my foot.  Before this surgery that led to this disease, my husband insisted that I did not have a high pain tolerance.  I cannot help but wonder if he would still agree.  He still randomly inquires as whether my foot currently hurts; it almost always does – perhaps my tolerance of pain is higher than he initially estimated…or perhaps I’m simply learning how to hide it…or it’s his way of showing concern when there is little he can do to ease my pain. Continue reading

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Emotionally Disjointed: A Testament of the Highs and Lows of CRPS

“The optimist says we live in the best of all possible worlds and the pessimist fears this is true.” -Unknown

Since I can remember, I have worn my heart on my sleeve. But since receiving the diagnosis, I can feel my emotions stretching my heart. One moment, my heart grows exponentially. I learn to appreciate all the intricacies of life – both the exceptionally splendid and the agonizingly dreadful. The next instant that stretching results in fissures that, if not patched quickly, can lead to rupturing.

Some days you feel so disheveled. [2006 Photoshoot with Jean Philippe.]

“I’m just this big mountain of cuckoo who’s about to erupt and spew molten crazy all over…” – Scrubs (Elliot)

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The Wrong Diagnosis: Denial

Denial deprives us of hope and strength. A photograph of me from 2005 captured by K Leo.

We Must be Missing Something

“An illness is like a journey into a far country; it sifts all one’s experience and removes it to a point so remote that it appears like a vision.” – Sholem Asch

But I’m “young and healthy”. The doctors told me so. Chronic? Treatable but not curable? This dialogue is beginning to sound an awful lot like the conversations we had almost exactly four years to the date when my mom was diagnosed with lymphoma. But we established that my entire medical care following my surgery in December has been exceptionally unusual.

My first instinct following my diagnosis was to heavily arm myself with research tools, sifting through websites and journals. Electronic enlightenment. I arranged lists, from practically infinite sources, of symptoms for CRPS. I then proceeded to “check” those symptoms that I could definitively proclaim did not exist in my case. Continue reading

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What I Wish Someone Had Told Me About Crutches

Sitting with the Lemurs at Center for Animal Research and Education (CARE)

Warning Labels

Upon receipt of my new set of crutches at the hospital, they lacked the accompaniment of written instructions.  It sounded simple.  Grasp the handles while holding your weight and limp with your good foot.  In my opinion, they should be required to include warning labels.  They look sturdy enough.  This is not entirely true. Continue reading

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