Tag Archive | Chronic (medicine)

An Award That Got Me In Touch With My Roots

I’ve been away from my blog for well over a week now.  It’s been a challenging week.  I recently read a blogger refer to her days as either “Green Light,” “Yellow Light” or “Red Light” Days.  She uses this as a communication system with loved ones. When the inevitable, “How are you” pops up, she can respond with the appropriate stop light… indicating: “Not too bad, proceed ahead,” “Rocky road ahead, proceed with caution” or “STOP! Body under repair, do not enter!”  Well, I’ve just come off a string of “Red Light Days.”

But after this rocky week, I returned to my blog to discover that I had been awarded not one, but three Blogger Awards!!  This is a huge honor and I am humbled by this gesture.  Not only was this a surprise in and of itself, but I received these awards from a blogger I wasn’t previously aware of.   Someone who just recently discovered my blog, and was so touched that she chose me for one of her ten nominations. Remarkable.

After the initial shock at receiving these awards faded, I started to buckle under pressuring thoughts: “What did I do to deserve these?” and “What will my next ‘inspiring’ entry be to live up to these nominations?!”

I forgot to stay in the moment and just feel the happiness and hope over receiving these awards.  To know that I have touched others as they have touched me is the true reward.  Especially coming form a new-to-me blogger… the “silent” readers who find comfort and connection in my words.

And, in the end, isn’t that the point of blogging?  Not to feed my own ego or to feed others; but to grow roots in a community of like-minded, supportive people.

When ecologists look beneath the surface of a forest floor, they discover an interconnected web that holds up the entire colony of trees.  One tree cannot stand alone (for long)… it needs its forest.  Just as I tried to stand alone with my own shallow roots for far too long; I was afraid to reach out my branches for help and to admit my daily struggles with chronic illness and pain.

Thanks in large part to the blogging community, I no longer feel alone.  Unlike Darwin’s theory of “survival of the fittest,” plants in a forest system do not survive individually.  They actually help each other survive.  They will share nutrients back and forth according to who needs it the most at any given moment.  And they will help each other withstand unexpected events (storms, fires, disease).  They do not discriminate; they help each other “inter-species.”

Not only do we provide a root system for one another, I feel like we all play the role of ecologist, as well.  We look beneath the surface (the “oh, but you look so good on the outside…”) to get to the root of things that lie beneath.  We accept each other (as I like to say, “warts and all”).  We trust each other.  We believe in each other.

And when one of us is too weak to weather the next inevitable storm, we hold each other up.  One day I hold you up, and the next day you return the gift with encouraging, validating words of kindness.  We remind each other why we need to stand strong and try again one more day at a time… why we should never give up.

Ecologist Suzanne Simard states, “AMAZINGLY, WE FIND THAT IN A FOREST, 1 + 1 EQUALS MORE THAN 2.”  Isn’t that also true of the WordPress Family?! (and our supportive readers!)

In my heart, these blogging awards are for each and every one of us; for every blogger who has the courage to tell it how it is, to be vulnerable, and to stand in their own truth.  I wouldn’t be here without all of you.  And I wish I could nominate all of you in turn…

I have been instructed to nominate 10 bloggers to pass these awards on to.  I want to be thoughtful in my choices… to recognize others as well as to give everyone an opportunity to explore a blogger they may not yet have discovered on their own.  As well, I want to think of the introspective questions I have been asked (as a nominee) and post those separately so you can get to know me even better.

In the meantime, I want to sincerely thank Life Beyond My Window (click for link) for passing these awards on to me.  And for giving me the opportunity to discover another inspirational blog!


It’s Been One of Those Weeks!


It’s been one of those weeks months years!!

I’m in a melancholy frame of mind.  Each day I awake expecting a different return on my daily investment.  And each day it has played out the same story: beginning with hopefulness, ending in defeat.  Yet, I keep getting up and trying again… One Day at a Time.

I can trace this defeatist attitude back to the beginning of last week; the unofficial end of summer, Labor Day.  It’s that time of year when fall ushers in a season of transition, rest and reflection.  My husband and I were struck by the lack of memories created this past summer.  We were overwhelmed by a year that had contained one “loss” after another.  No, it wasn’t a traumatic year (health wise); we’ve certainly have had our share of those.  But in its mundaneness, it almost felt worse.  We felt we truly had nothing to show for the past nine months of “just getting by.”

It’s been a year of “take-aways.”  It has felt like we have been punished, our privileges revoked, for actions we didn’t commit.   We’ve had to accept one “reality of life” after another, with no reprieve.  After five years (!) of a pending lawsuit against the medical providers that ignored my acute symptoms resulting in a ruptured colon, sepsis lasting two weeks, and culminating in the infamous words, “You have a 10% chance of making it through the surgery. You need to say goodbye to your husband,” we were told we had to drop the case.  That there was no doubt the evidence showed clear negligence on the doctor’s part (they even admitted to such in deposition!), but my multiple underlying conditions muddied the waters so much that a jury would be hard pressed to agree on a guilty verdict (and we would be out upwards of $200,000 for even trying).  Hence, Loss #1: no chance of financial security for you two!  Then, just mere months later, we were informed by my GYN that we should never, ever, ever attempt to get pregnant, because doing so would result in a 95% chance of death (for both myself and the fetus).  Major Loss #2: life-long hope, wish, most-certain dream, dashed.   And this cycle of loss has continued; punishments administered just by the sheer fact that I am sick.  They haven’t all been so big and life-altering, but the small punches knock you down over time just the same.

It’s also been a year of “give-aways.”  Unfortunately, not like the Prize Patrol kind, but the bill man’s at the door requesting you give-away all your money kind!  Every time we’ve accumulated a small nest egg to take a trip or do something “normal” (like go out to dinner), we’ve been hit by another unexpected financial necessity: the cat’s been sick, the van’s been sick, my feet are sick and need new soles, on and on!  Thankfully we’ve been able to cover these excessive, unexpected expenses, but it’s also left the cookie jar empty… not even a crumb for a desperate late night snack.   I’m feeling this so markedly in this time and space, because it is now, today, that we were supposed to be on our vacation to Cape Cod; our “healing respite” we called it.  Yet, one more thing we looked forward to for months that we had to forsake, just to get by in the living present.

And, that’s it… the only thing certain in my life is The Present: this very moment in front of me.  My husband bemoans that we should never plan anything, we just have to cancel it anyways.  And, to some extent, I agree.  It’s extremely discouraging to get your hopes up only to have them dashed down over and over again.  It’s one hell-ride of a roller coaster.  But, I can’t go through life without having dreams.  At the same time, it’s a stark reminder to live and enjoy each present moment, regardless of what you are looking forward to on the horizon.  Sometimes, we have our heads stuck so far up in the clouds, we forget to enjoy the amazing scenery beneath our feet.

I admit; I’ve been in a funk.  I know that we all have to make sacrifices, with the hope that the future will be brighter. But, and I guess this is where my P.T.S.D. comes in to play; I’ll get scared that there won’t be a “next time.”  I’ve lost so much time, so many years, to being on my death bed sick that I get fearful when time passes me by that could have been filled with larger than life living.   People will often say, “well, none of us know when our time will come; I could get hit by a car tomorrow!”  Yes, that’s true.  But, let’s face; most people don’t have a clock ticking down at rapid speed, like those of us with severe chronic illness.  We live with our mortality every day.

This “Debbie Downer attitude” has kept me from blogging recently.  Yet, it feels cathartically healing to write this all out on page and share it with you.  And it has helped to refocus my intentions.  I may not be communing with the seals of Cape Cod right now, but I am communing with all of you.  And I am grateful to be fully alive, and fully present in this very moment.

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?!

Perhaps I should come with a warning label?

Why do I have the need to let people know right off the bat that I’m broken?  Perhaps, if they acknowledge that they are already dealing with “damaged goods,” their expectations of me will be lowered.  And therefore they won’t be disappointed when, eventually, as always happens, the true nature of my abilities (disabilities?) are revealed?

As so many of us that deal with chronic illness, especially those on the “autoimmune spectrum,” my illness is all on the inside.  At first glance, I appear to be a healthy, well put together woman.  My skin doesn’t look wrinkled or marred (as long as you don’t get a peek under my shirt at my surgical scars!);  I enjoy dressing in cheerful colors; I’ve applied a layer of make-up to brighten up my pale face and disguise the circles under my eyes.  I am not gaunt, in fact my multiple meds. give me quite the “robust” appearance!  I am putting on a show!   But inside… now that’s marching to the beat of a whole different drummer!  While I stand smiling at you, nodding at your comments, and putting on my happy, hopeful face, there is a war going on inside me.  One that I am rapidly losing.  The Autoimmune Army has already marched its way across my muscles, joints and cartilage, my colon and small bowel, my spine, my cranium, my nervous system, my kidneys, even my heart, giving me an atypical heart attack at 39!  At that’s just a quick summary.

So, how do I rectify these two disparate sides of myself?  I am both… I truly am the happy, hopeful person you see on the outside; the one who enjoys feeling pretty, who craves to be “normal.”  But I am also the hurting, struggling woman who has to fight her way through each day.  Whose participation in the simplest of social activities will knock her out for days.  Whose attempt at the most minor household chores sends her into tears of frustration.

So, I think, perhaps I should come with a warning label:  Contents may be different than they appear.   But, that’s really not the answer either.  Because then I have already disqualified myself, undermined my abilities.  I truly don’t know what I’ll be able to do on a given day.  But what if it’s one of those rare “good days?!”  The ones we all hold on for.  I’ve already discounted the weight of this by telling everyone I’m just not up to par.

There is no clear answer here and my approach continues to fluctuate.  But, the most important thing I’ve learned is not to count myself out.  And to seek out friends who are kind, caring, and, most of all, flexible.  And then share with them the “truth,” my own reality, and see how they react.  I wouldn’t go on a blind date and immediately blurt out my deepest secrets.  So why would I want to include any of this in an initial introduction: “Hi, my name’s Tamara.  Glad to meet you. Oh, and by the way, I’m a broken, hurting person… just so you know.”  How ridiculous is that?

I am not broken!  I am complex!  I am unique!  I don’t take life for granted, because every moment presents a new opportunity to learn something about myself or the world.  I have deep empathy for people with a wide range of conditions.  I get you, and you get me.  We are not alone!

It’s during these times, that I gently remind myself to push the pause button.  To take a deep breath.  And to practice a beautifully healing mantra my friend Lisa shared with me.  I’ve just paused and given myself this gift.  Now, I am going to pass it on to you…

Nature's Love

Nature’s Love

1.   Take 4 deep, cleansing breaths

2.  Place your right hand over your heart (the most important step… give yourself the gift of this healing touch!)

3.  Repeat this mantra 4 times:

“I am a whole and lovable person just as I am.”

“I am a whole and lovable person just as I am.”

“I am a whole and lovable person just as I am.”

“I am a whole and lovable person juts as I am.”

4.  Allow yourself a few minutes of relaxation.  Breathing love into yourself, feeling the power of being uniquely you.

The beauty of this exercise is that it can be done anywhere and at any time.  Even in a room full of people, no one will notice if you casually place your hand on your heart and silently repeat the mantra.  After a while, just the touch alone is a soothing reminder to bring you back to center.

I would love to hear about what techniques others employ to remind themselves that they are right where they are supposed to be.  That they are right who they are supposed to be.  Please share your thoughts and comments!