Tag Archive | gratitude

These Are My Graces…

beautiful-cloud-heart

Yesterday, was my father’s birthday. He passed 4 years ago and so with the day brings a deep sense of melancholy, and yet… all I feel is JOY at the myriad of ways his spirit shines through me every moment of every day.

Today, I am in more physical pain then I have been in years. Meds have been changed, symptoms flared, and yet… all I feel is GRATITUDE that I am able to be with my closest family today; the ones who do not expect me to be anything other than me.

A couple days ago a dearest friend called in deep distress over the sudden loss of her closest mate, her dog. And my mind reeled with the age old question, “Do we close ourselves off to love to protect against the pain of loss?” And yet… all I feel is BLESSED at the way every being in my life has shaped me; has made me a better person. I have lost a lot… and yet I have also lived a life full of love.

Today, I turn on the news and once again bear witness to the tragedies of war and famine, death and disease, throughout the world, and yet… all I see is STRENGTH in the faces of my brethren, and the little acts of KINDNESS that are woven through the stories of strife.

THESE ARE MY GRACES…

The way I live my life… the way I view the world.

Threaded through my heart, coloring all that I see.

Influencing the way I treat others, and in turn, the deep compassion in which I am treated.

It is seeing a world full of ABUNDANCE instead of loss.

Grace, no longer reserved for just the Christian community… it is there, right there. Every Where. For every one of us.

Ripe for the picking.

Grace is not a thing you can earn, or deserve, or create, or even lose.

You do not have to be “redeemed” by grace; we are all gifts of grace.

It is always there. It is in the sparkle of newly fallen snow, blanketing the world in a clean, new slate.

It is in a child’s smile as they crack open from ear to ear at the mere sight of you.

It is in the gentle pressure of two hands as they encircle you in love, in support, in comfort.

It is the feeling in your heart when you give of yourself, passing the grace, to another.

It surprises us. When we are at the end of our ropes, Grace appears with an extension piece to help us get our feet placed firmly on the ground again.

It astounds us. A reminder that “no matter how tragic or bleak things get, the bad simply can’t shut out all the good, the dark can’t squeeze out all the light.”

It is our safety net: woven from the hands of loved ones, the history of passed ones, the memories of times survived, the hope that there will always be a brighter day ahead, and the knowledge that this too shall pass, and that in this moment, grace shimmers below the surface of everything.

And although GRACE is an unexpected, yet utterly amazing, gift waiting to be opened anew each day, you can still be an active participant in grace….

Pull grace into your life. Tonight at dinner, invite everyone to share their best “Grace Story.” This a great way to express gratitude for the ways grace has graced your life; and to role-model this attitude for others, especially children.

Be a witness to Grace’s magic. We’ve all heard of Bird Watchers, now it’s time to become a “Grace Watcher!” Keep a grace journal, where you document the ways grace has worked or appeared in your life each day. Review it at the end of the week and be uplifted.

Be a Giver of Grace. Look around today. Who in your life needs to be reminded that grace is still working in their lives; who needs to be uplifted by a moment of grace? Is there a way you can pass the grace this Thanksgiving, without that person ever knowing where it came from? Challenge yourself to this. It will be surprisingly rewarding: doing a random act of grace just because.

Turn yourself over to grace. Choose a day during the upcoming holiday season where you put your calculated “To-Do List” down for a day. Let grace guide your day instead. Trust that what needs to get done, will.

And most importantly, be open to grace. Center yourself each day with a short mantra. Mine is, “May my mind, eyes and heart be open today to seeing and receiving the gifts of grace that cross my path.” The challenge comes in accepting the gift of grace in whatever form it comes. No “return to sender.” Remember if at first I doesn’t seem like the right fit, try again. Grace often appears in unexpected ways and at unexpected times, and yet it is always just what you need in the moment to get by.

“The winds of grace are always blowing,

but you have to raise the sail.”

{Ramakrishna}

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The God I Have Vs. The God I Want

courage anf fear

I was recently challenged to write about “the god you do believe in and the god you would like to believe in.”* I read this as the god I have versus the god I want. Upon reflection, I quickly realized they are now one and the same.

I did used to think of god as a punishing god… or more often, an absentee god. I couldn’t see the ways god was working in my life, so I denied any existence of a god, or a higher power. Truthfully, this “me of the past” probably would have skipped even reading a post with “god” in the title. I was that closed off to the existence of something greater than myself.

If there was a god, where was he/she when I was sick and dying?
When I was abused and attacked?
When addiction consumed the lives of my family and myself; the monster, Alcoholism, marching its deadly force straight to my beloved Dad’s doorstep?
Where was god when physical and mental pain and anguish played ping-pong with me and Dave?
Where, where, where?! I lamented.

Thankfully, I finally surrendered myself to the idea of a greater existence, to a god, in whatever form. For me, it started with daily prayer, most often filled with thoughts of gratitude.

My god today…
…travels in the minds and bodies and hearts of those around me; sending messages and offering Hope through their words and actions. My god wears skin.

My god is energy… energy that flows freely in and around me; energy that is never stagnant. And when I tap into this never-ending supply of energy, creative flow happens. Joy happens. Hope and inspiration happens. Love happens.

My god is always leaving presents in my path. I just have to stay open to receiving them, to recognizing them when they appear so that I can embrace them, fully.

My god is abundance. There is always enough spirit and energy to go around.

My god is a River of Grace that flows through each and every one of us.

My god is neither good nor evil. My god neither rewards nor punishes. My god needs no definition. My god is unique to each and every one of us. My god just is.

My god lives deep within the earth, growing roots to ground me… to bring me home. All the while connecting these roots to others and creating a collective conscious of love and community.

My god is my intuitive voice. The one that sees the path clearly and always know “the” choice for me–never waffling. When I turn a deaf ear to this voice or question its motives, I turn my back on god and my one true purpose in this life.

And, my god lives in the Now. It’s when my mind wanders off the present path and tries to predict the future or live in the wreckage of my past that I lose sight of god.
But when I keep my feet firmly planted in the soil of the now, not questioning the why, only focusing on the what, that I am always moving in a Good Orderly Direction.

Inspiration flows freely.
Opportunities open up like butterflies from their cocoons.
I never have to be alone or feel isolated again, because I feel god everywhere and in every one. And I too shine from within with the light of god.

My god reminds me that “I have arrived.”

* Exercise came from Julia Cameron’s, The Artsist’s Way (p.106)

My 2014 Bucket List is Filled With JOY!

 

bucket list

As you know, I have been mulling over a 2014 Bucket List for the last month.  I want to set my intention for the New Year, so that I expect and accept abundance from the Universe.  But I find myself wary of “asking for too much.”  You know the old fear of “setting my expectations too high only to feel disappointment in the end:” disappointment in the limitations of my physical body, financial resources, time, energy . . .

But I also know from experience that if I don’t open myself up to the possibility of achieving greatness, I will never achieve greatness.  If I don’t trust in my mind, body and spirit to reach beyond the familiar into the stellar, how do I expect the Universe (or God) to?  That by setting my intention and sending it on the wings of my new year’s prayers, I am sending a clear message to God and the Universe that I believe in myself.  That I believe in my hopes and my dreams.

So I decided to attack this personal assignment with gusto! – To choose some goals that my deepest heart desires, reaching just beyond my comfort zone, to where life truly begins.

In the midst of this contemplative meditation, I was gifted resources by my monthly Soul Matters group.  This month is “Living a Life of Character,” the goal being to shift our perspective from a flaw-focused view of “You should be better this year” (IE- fix your imperfections, change those bad habits) to one of building character from a perspective of joy.  I love that!

One of the suggested videos for viewing is a TED talk called “Rethinking Your Bucket List:”

http://www.karmatube.org/videos.php?id=4029

Hospice counselor, Kathleen Taylor, discusses the shift of perspective that happens at the end of life (and can also be mimicked by those undergoing severe/life-changing illness).  That we, as humans, experience three phases in our life on the path to discovering our authentic selves: Youth = fearless, we set our course for life; Middle = we start to question that course; and End = we find answers about that course.

A renowned study discovered that the #1 regret of the dying is: “I wish I had the courage to live life true to myself and not the life that others expected of me.”

Dying (and chronic illness) teaches us that it is never too late to shed what is false and become who we are truly meant to be (authentic self).  She challenges us to think of it in reverse; “that it is never too soon to shed what is false and. . .”

Kathleen suggests we reverse the existential question, “What am I supposed to be doing with my life” into “Who am I being with me life?”  If you are living a life of authentic character, you can let go of the confines of what you should be doing, because doing flows naturally from being.  As Elizabeth Gilbert says, “God shows up in us, as us.”

Unfortunately, this spiritual revelation usually doesn’t occur until the time of death.  When people have no time or strength left to be anything other than they truly are, they become their authentic self. Psychologists have studied and identified a developmental stage of growth that actually occurs at the end of life: people “find a deeper sense of self and finally awaken to the preciousness of time.”

Haven’t you ever encountered an ill person who is completely open and honest; who doesn’t fear changing their mind; who freely apologizes and forgives; who expresses love wherever and whenever; and who finds joy, even in the smallest of moments?

Kathleen Taylor states that as the body slows down, perspective shifts, and the person’s mind, heart and soul actually expands. Neil Sulanger, wrote as his ALS progressed, “As I diminished, I grew.  As I lost so much, I finally started to find myself.”

I have experienced this; when I was teetering on the edge of death.  I’ve just forgotten.  But my own experience combined with this spiritual exercise has reminded me that we all have the capacity to find ourselves.  So, my Bucket List is going to be a combination of the traditional (physical acts) and the existential (character trait).  I am going to focus on who I uniquely am and celebrating that… finding joy in all the ways I can and will contribute to the world.

My list includes ways I will nurture my creativity and curiosity; ways I will expand my knowledge of myself and the world; activities that will change my perspective and challenge my bravery; opportunities to expand my capacity to love and be loved; ways to be a leader and to promote justice; prospects for forgiveness and humility; and many moments for transcendence: to appreciate beauty, foster hope, and increase my spirituality.

I am including my list with the caveat that it is not static; my list is not set in stone.  I am keeping it open and flexible for the abundance of opportunities that are sure to come my way this year, as long as I keep my heart open to receiving them!

Please share your bucket list experiences too!!

MY 2014 BUCKET LIST:

  1. Trip to Arizona (get health evaluation at clinic and visit healing-energy sites)
  2. Get my driver’s license
  3. Take Hubby on surprise getaway (like he has so often done for me!)
  4. Take 2 art courses: one to hone existing skills (advanced drawing or painting) and one in a “new” medium (stained glass or silver work)
  5. Return to Cape Cod for vacation
  6. Rent a speed boat
  7. Hang-glide or para-glide
  8. Bond with my sister-in-laws
  9. Take my nephew on an Auntie-Nephew adventure (as yet to be defined!)
  10. Try Paleo diet and document dietary intake/symptoms
  11. Go deep-woods yurting
  12. Learn Reiki
  13. Go on trip to Lily Dale (spiritualist center) with my girlfriends
  14. Get my art featured in a coffee shop, restaurant or gallery
  15. Engage in volunteer activities with young children
  16. Write blog entries at least 3x/wk. so by end of year have enough for a book, if want
  17. Start a Gratitude Jar filled with moments of joy, hope, beauty and love that I will review at the end of year
  18. 18.  Love widely, listen deeply, encourage others, value self, embrace joy, spread love & light, embody hope, express creatively, laugh with abandon, forgive from a deep-well of kindness, practice compassion, and be the gift as much as I see the gift of this world.

Become Awe-Struck!

Tropical Hibiscus blooming on our deck in chilly October = Awesome!

Tropical Hibiscus blooming on our deck in chilly October = Awesome!

Awe (n.):

1. A feeling of reverential respect mixed with fear or wonder.

Synonyms: wonder, reverence, respect, admiration, dread, fear, esteem

It surprised me to see the antonyms of “wonder” and “fear” used to define awe; same with “admiration” and “dread.”  Do we truly dread what we most admire in wonder?  Is it a fear of never experiencing a moment of awe again?  Or perhaps a dread that we are somehow missing something?

I was recently told, by a stranger no less, that I am a “feeler.”  This wasn’t meant as: “you’re so sensitive;” it was a complimentary observation.  She said I was so in tune with the energies of people around me (living and dead), because I feel, which is not a trait every one possesses. A friend also recently told me, “you are an engager;” that I actively engage in life and invite others to do the same.

I experience my life with all five (sometimes six!) senses.  I am blessed to be someone who is awe-struck at least a half-dozen times a day.

Awe has saved my life.  I realize that the ability to feel awe is one of my greatest coping mechanisms.  When I was “near-death sick,” I would gain strength through the awe-some acts of kindness from family, friends and strangers to the awe-inspiring views of blazing sunsets and even full rainbows gracing my hospital room windows.

As well, during moments of deep emotional distress; times when the pain was so great I felt like my only option may well be to end my life, moments of awe and the fear of missing out on awe, have kept me around to try one more day at a time.

An unknown poet describes an episode of awe as becoming “wholly dissolved” in the moment.  This resonated deeply with me. For when I let myself fully succumb to the experience, it is like the outer world falls away and I am now one with the moment in front of me; experiencing awe with all my senses. And this is where I think “fear” comes in; because it is a true surrender, a letting go of control, to be able to fully engage in the discovery of awe. For me, these reverent episodes fill me up with awe, so that I can experience this sense of wonder everywhere and in everything.

I whole-heartedly embrace awe and invite others to do the same.  I will make my husband turn around to watch fawns graze in the morning mist or a blood-red orange full moon rising just above the horizon.  I have been known to go back into stores and tell strangers to come outside because there is a double rainbow across the parking lot.

I am now going to do the same for all of you… I implore you to embrace awe in the month ahead.  Then let me know how it has changed your life! :

  1. A great way to begin looking at life through awe-colored lenses is to observe a child or a pet.  Children investigate and explore everything in their paths with a sense of awe.  And it never fails to make me smile when I observe my cat discover a sun spot on the floor; she will watch it, chase it, sleep on it, and almost breathe in its warming essence.  If you don’t have a child or pet in your immediate family; go to a playground and find a bench to relax on; just watch and become inspired!
  2. Start keeping an “Awe Journal:” document moments and experiences in your day that make you pause and sigh with gratitude.
  3. Experience a small chunk of your day with all five senses.  I like to do this when I first get up: I sit in my favorite chair and listen to the coffee percolating, relishing in its deep aroma; I hear the birds chirp their morning song and watch the sky rapidly change colors as it welcomes the day; I feel the softness of my favorite blanket warm up my muscles and the purr of my cat vibrating on my legs; I savor that first sip of my morning beverage, imagining all the phases it took before reaching my mouth (the coffee bean’s journey from field to pot; or the spring water’s path from waterfall to tap).
  4. Write a note to someone thanking them for bringing “awe” into your life.  Perhaps it was through a loving gesture, or as an inspiration to you, or by being someone who epitomizes awe-someness!!  Find someone to emulate and mimic their enthusiasm towards awe.  I guarantee it is contagious!
  5. Intentionally create an environment for awe… usually through an experience that engages the senses, such as a concert, an art exhibit, an art project, dance, theater, etc.
  6. Go through old photos and pull out ones where you have captured moments of awe: your grandson experiencing bubbles for the first time; a friend graduating from college at 30; the first flowers of spring; a riotous sunset or sunrise; your first time dancing again after knee surgery; a wedding; a birth… once you actively start looking for awe in your life, you’ll be surprised how many moments have happened without you realizing it.  Or use your smart phone to document moments of awe as they occur and then see what you’ve collected at the end of the month.

Once you open your eyes to awe, you will begin to see it everywhere.

Please share your awe-thentically awe-some ideas with all of us  🙂

“Gratitude bestows reverence, allowing us to encounter everyday epiphanies, those transcendent moments of awe that change forever how we experience life and the world.”

– John Milton

Don’t Give Up 5 Minutes Before the Miracle Happens

everything-is-a-miracle

There is a catchy little saying, “Don’t give up 5 minutes before the miracle happens.”  There are times when this concept seems plausible. And yet others, when those five minutes feel like they won’t come for five years, if at all.  Last week was one of those “other times!”  But, I forgot while in the throes of anxiety, stress, worry, fear, and pain that miracles come in all shapes in sizes; that their messengers come wearing a variety of colors and cloaks.

Since August, life has been lobbing one curve ball after another our way.  Starting two and a half weeks ago, it was like the pitching machine got stuck; the balls were coming at such a high speed pace, from all different directions, there was no chance of catching one before the next one flew at my face.  And when all your time is spent juggling the balls of life, the mind is too exhausted to even comprehend the possibility of a miracle.

I knew this would make me blind to any miracle that happened, and I didn’t want to miss a one.  So I started my daily gratitude list, marking ways that “grace” had shown itself in my life.  Many days it was like pulling teeth trying to write down just three things I was grateful for that day!  This started to depress me even more.  I’m not saying the exercise didn’t help to “right size” me on many days; that is, put things into perspective.   But it’s also been awhile since I’ve struggled for so long, each and every day.

I really felt like there was no light at the end of the tunnel.  My weeks were filled with a constant onslaught of medical stressors: five days(!!) of bowel prep for a virtual colonoscopy that discovered a suspicious polyp; a fitting for “absolutely necessary” orthotics that were costing me a mere $500 (no insurance coverage); my autoimmune disease (Polychondritis) that flared in every joint, tendon, and muscle in my body; asthma attacks for the first time in a long time, waking me at night “suffocating”; a subsequent visit to my rheumatologist where he was so concerned he almost increased my Prednisone (IE: steroids- oh, no!) but instead decided to put me on Remicade infusions (half day long treatments that are the strongest this class of medicines gets); the start-up of another “hemicrania continuum” (IE: daily, mind-splitting migraines, unresponsive to treatment); 20+ Botox injections in my head and neck for same (that felt like a barrage of wasp stings and triggered an increase in pain – ouch); a “suspicious” mole removal on my back after early years of over-sun exposure (and a subsequent wound that is not healing);  and lower back and hip steroid injections (never fun!)…

Phew! I am exhausted just writing that all down!

And, the stressors didn’t stop there.  Not only was my disease flared by the change in seasons, but so was my husband’s depression; resulting in daily anxiety attacks (many directed at me. Sigh.).  Several friends experienced emotional crisis during this period, and I was the friend they reached out to for support.  Our cat got sick and needed medical care.  Bills seemed to be landing in the mail daily at the rate of political flyers in November.  And the final straw? Our van, our only vehicle, died.  The frame rusted out and landed on the steering box, and, well… you can imagine the rest!

The fear started to set in.  What are we going to do?  How are we going to afford this?  What if we don’t qualify for a loan?

Then, I took a deep breathe, prayed to my higher power, and took the first step.  Information is power.  And, at that point, I had none.  All I had was mis-information that was swirling itself into a cyclone of worry and anxiety.  Not a good equation for an already over-stressed body and mind!

It got worse before it got better.  But, then, last Tuesday, the miracles began to happen.  And because I had “slogged” through those daily gratitude lists, I was able to see them, and appreciate them as they occurred.  After a few unsavory experiences with used car dealerships, we walked into a particular store and were warmly greeted.  For the first time, I felt like each person looked as us as just another human.  We were paired with a gentle soul from Nigeria whom had worked at this same location for 20 years and took deep pride in his work.  He was not paid on commission and spent hours working with us, never feeling harried or put-out.  He not only helped us find our dream vehicle, he figured out a way that we could afford it.  He gave us free credit-counseling advice, outlining a 3-5 year plan to establish credit (we are a one credit card family; a negative in today’s consumerism America!).   Then my mom stepped in to selflessly lend her name, backing our credit for the bank, so that we would get an interest rate under %5.

Friends graciously lent cars and emotional support.  We had some small gifts of “unexpected funds” come our way.  And yesterday I got news that my mole was benign. Thank, God!

And, I realized, after weeks of “getting by,” we were gifted a day of reprieve and then another.  And that this is the true miracle of life.  This new vehicle and all the angels who helped us to get here didn’t suddenly erase the physical and mental pain we are experiencing.  But it gave us Hope.  And hope is what gets us through the unbearable days. 

At some point, life lets up.  The miracle happens.  We just have to keep our minds, eyes, and hearts open to witnessing it.

Don’t give up.  You never know when your 5 minutes will arrive!

Cultivate a Garden of Hope

where-flowers-bloom-so-does-hope-beth-buelowWe each possess a ripe environment in which to cultivate our own Garden of Hope; but is up to you to ensure that the soil of your soul is fertile ground for your garden to grow successfully.  Like “acceptance,” “hope” doesn’t just happen. You don’t wake up one day and announce, “I am Hopeful!” It is a daily practice; it takes time. And just like a garden, it needs to be nurtured, fed and cherished.

Life and its circumstances can clog our garden with weeds and debris. All it takes is one solid shake of a tree, rattling our core foundation, to scatter leaves to all corners, disguising the Garden of Hope that lies beneath. In times like these, it is wise to call on external support to clean up your garden, to lift up your spirit. Hope isn’t a solitary pursuit.  Hope is meant to be shared and to be received.

So how do you cultivate this Garden of Hope?  It starts with just one seed, sowing your mind with little daily reminders of Hope.  Overtime, these individual experiences start to reseed the soil, creating clusters of Hopeful memories.  Hope becomes exponential.  The more you practice Hope, the more Hope grows.  And the best fertilizer to help your Hope blossom is a generous dose of Gratitude.

Hope and Gratitude go hand in hand.  Anytime you are feeling overwhelmed, clogged with the weeds of Doubt, Worry, Fear, Anger, and Apathy, think of just one thing that you are grateful for that day. Most often that one thought leads to another thought, and then another… until you picking poppies rather than stinging nettle!

Here are additional ideas for incorporating gratitude into your daily practice:

  • Write an “A-Z Gratitude list” with one grateful reminder to match each letter (ex: A=Asha, my cat; B=Babies, like my awesome nephew; C=Colorful sunsets; D=Dave, my always supportive hubby; E=Enjoying a book in the hammock; etc.)
  • Write a Retro-Gratitude List, travel forward 10 years from now and then look back at your life today and all the things you felt blessed to have had in 2013.  Many times we miss moments of gratitude and grace in our daily living. Remind yourself of all the unexpected gifts you received, friendships formed, risks taken, challenges met, times spent with loved ones, etc. Start with the basics: “I lived in this amazing apartment/house I loved at (location).”
  • Make a list of all the ways “God showed him/herself in your life today.” As you experience moments of grace, gifts of support and friendship, opportunities for hope or growth, or periods of peace, jot them down. Or it may be more symbolic, “signs” that God is working in your life.
  • Create a Gratitude Grab-Jar: As you experience feelings of gratitude, write them down on a small piece of paper and stick them in a jar.  Then you’ll have reminders to pull out during times you are feeling less than grateful!
  • List all the things you can do in your life (regardless of physical, mental, financial or time constraints) that bring you a grateful heart. For me it’s: listening to music, meditating, taking a short walk, sitting in my backyard, petting my cat, reading a book just for pure entertainment purposes, enjoying a dark piece of chocolate. This is another list to resource during times of sadness or stress.
  • Think of all the people in your life you are grateful for; make your own catalog of angels.   List both people in your present circle but also those who are no longer in your life.  For me, some of my biggest supporters and champions have passed away, but I know their spirits still watch over and protect me.  Other people were in my life for short periods but the impact they made is ever-lasting (like a caring nurse).
  • Start a “3 Good Things” daily list: at the end of each day write down “the three things you are grateful for” or “three good things that happened to you that day.”

These exercises will help you cultivate a Hopeful Heart; something you’ll carry inside of you always, like a soothing secret.  Once you have created your own flourishing Garden of Hope, you can then visit it anytime to pick a bouquet of flowers. And, when doesn’t a handful of fresh, bright flowers make any situation seem brighter?!

“Hope is the thing with feathers

That perches in your soul

And sings the tune, without words

And never stops — at all.”

(Emily Dickinson)

Searching (in vain) For the Magic “Fix-It” Button

affirmation1741At some point, during the path of chronic illness, both with mental and physical conditions, we “sufferers” hope for a magical cure.  At first, it’s the search for the correct diagnosis. “If they can figure out what I have, then they can figure out how to fix it, right?”  The average time from onset of symptoms to diagnosis for a patient with an autoimmune illness is 12 months- 5 years.  That’s a long time to hope!  And that’s just Stage One.  There is temporary relief at this point; a validation for the myriad of seemingly disjointed symptoms that have displayed themselves over the years.  I remember thinking, “finally! Someone is listening.”   But with the complexity of autoimmune disease and chronic conditions comes the challenge of finding the right combination of treatment modalities to match the exact manifestation of the disease in your particular body.

Stage Two begins once the diagnosis is in place and the march of treatments commences; this one doesn’t work, this one mildly helps, oh, found one that works for these symptoms, but not those… There comes a point when many doctors say, “I don’t know what else I can do for you.”  God, this used to be so frustrating!  Until I realized that the medical professionals feel just as frustrated at not being able to fix me as I do at not being able to be fixed.  At this period of time, I picture facing a crossroads between Stage Two and Stage Three.  Many patients turn around at this point, and “re-do” Stage Two, perhaps with second, third, even fourth opinions; with extensive self-research; by participating in research studies; or by going to additional specialists for additional tests.  There are many ways to travel the roads of Stage Two over and over again.  I know I sure did.  I felt I had to exhaustively map out this terrain; perhaps there was a secret curative tonic hidden somewhere?  But, getting your hopes up over and over again about some new treatment or new doctor, only to have them dashed again, is extremely taxing, physically, mentally and spiritually.

Over the last few years I’ve started to move forward, onto Stage Three.  Stage Three is the most challenging stage; many sufferers may never reach this stage.  This is the stage of acceptance that there is no magic cure; no perfect “fix-me” button.  It doesn’t mean I don’t keep my ear to ground, listening for new and innovative treatment options for my conditions.  But I also don’t put all my eggs in one basket anymore.  I know that I will always be in some level of pain.  The truth is that my disease steadily progressed for the 5 years before it was diagnosed and treated, and that damage is irreversible.  This is where acceptance comes in (once again!).  By accepting these facts, I can focus my energies on managing my symptoms (rather than “curing” them), finding different ways to adjust my activities as to not exacerbate these same symptoms and developing coping skills to deal with them on a daily basis.

Last week, I had an endocrine consult for the first time.  I explained to the doctor that I was well aware there is no curative tonic that he will miraculously discover in which to heal me.  I just want to be thorough with my care, and if there is something awry that could explain some of my “excessive” symptoms (like this debilitating fatigue and waterfall sweating armpits!), it would be a relief to treat those concerns alone. He sat back and said, “You have a really grounded, realistic perspective on your disease.  The majority of my patients come in here pleading for me to ‘fix’ them and become very agitated when I can’t.  You have reached an extremely healthy level of acceptance and your attitude will serve you well in managing your disease.”  These words were the healing tonic I craved.  To be heard, to be acknowledged.  He was adamant about the validity of my concerns, but was also honest about the (in)ability of modern medicine to treat them. 

No one is questioning that I have life altering symptoms.  But, there is only so much modern medicine can do to treat them (another solid reason to advocate for studies on women with chronic conditions!). The truth is that if I lived 40 years ago with Relapsing Polychondritis, I would have been diagnosed postmortem.  Without the treatments available that keep me alive today, RP was diagnosed after one’s trachea had collapsed or the patient went suddenly blind or deaf.  Even though I live a life of daily pain, how can I not have gratitude for the fact that I am alive to live it?!