Tag Archive | Surgery

Staying Angry at My Chronic Illness: I’m the One Who Gets Burned

buddha-quotes-sayings-quote-deep-anger-wisdom Am I angry at my illness?  This was a question recently posed by a friend who remarked, “I know I would if I were you.”  And it’s given me pause.  I certainly have been angry at my illness in the past, or more accurately, at the doctors who ineptly handled my illness resulting in near-death effects.  Holding on to the resentment aimed at these negligent doctors gave me a false sense of power in a situation where I was entirely powerless.  If I could focus my energy on them; I wouldn’t have to face the reality of my physical unwell-being.

When I sit quietly with this question today, I stay deeply aware of all the emotional currents running beneath the surface.   And none of them resonate with anger; not any more.  Is that even possible?, I wonder.  Yet, it is.  Time heals; if you let it.  Somewhere during my medical journey, I realized the only one I was hurting by holding onto this red hot coal of anger was me.  I waited years to lob that coal at the ones I resented.  In the end I was left standing with the hot coal in my hand; the only one burned by this “righteous fury.”  I got tired of burning myself.  I finally had the insight to see that by holding onto this on-going anger, I thought I was giving myself back power.  But in truth, I was giving these doctors the power, by constantly bringing their negative energy into my life over and over again.

Anger and resentments are tricky things.  Many of us are afraid to let go of anger, because then it will signify that the other side has “won.”  That you are giving in.  But, it’s the exact opposite.  Just because you forgive, doesn’t mean you forget.  We often associate the word “forgive” with excusing someone for their behavior or mistake.  And this can be true.  But, in this circumstance, forgive falls under the alternate definition: “to stop being angry about or resenting somebody or somebody’s behavior” (Encarta Dictionary).  That’s all.  I decided to stop being angry; to put down the hot coal and start living my own life again.  I have not forgotten what the doctors did; I could never forget that.  But, by forgiving, this experience became an extremely unpleasant memory.  It taught me how not to act in the future.  In this case, I no longer implicitly trust doctors just because they have a medical degree on the wall.  If they are not responding to the needs of my body, I go elsewhere.  Because that’s the key, it is my body.  Therefore I am the only one truly qualified to know when something is awry with it.  In this case, by processing my anger into forgiveness, I’ve gained valuable tools in which to address my physical needs.  If I was putting all my energy and effort into hating these people, I would miss the experiences that are happening in the now.love-quotes-026

Holding onto to anger is living in the past.  I have already lost chunks of my life to illness, I am not about to sacrifice anymore by reliving the resentment I feel at my physical condition.  That’s not to say I don’t get frustrated with my body and its limitations (see yesterday’s post as a fine example of this!).  I just choose to fully embrace these feelings when they come, validate myself, share them with others, and then let them go.  For me, dwelling in a place of anger only creates a septic environment filled with fear.

So what is the opposite of living a life of anger?  It’s living a life of acceptance.  Again, acceptance doesn’t mean that I have to feel joyful about my situation, it just means that I have come to terms with life’s circumstances; it’s “the realization of a fact or truth and the process of coming to terms with it” (Encarta Dictionary).  The truth is I have a chronic illness; actually several chronic illness.  They are all autoimmune in nature; my body has decided that my organs, cells, blood vessels, bones, and connective tissues are the enemy and will attack them at no cost.  Those are the facts.  It is also my truth that my disease cannot “attack” my spirit unless I let it.  I choose to accept the facts of my situation and to live in what I know to be true.  Holding onto to anger at my body only creates another invasive disease.  It makes me stay stuck in the past, in the “what if’s” and “if onlys.”  If only my life had turned out differently.  Well, it didn’t.  So instead of constantly fuming over my situation and asking (wailing), “Why me?!,”  I’ve decided to bury my anger, plant a garden of acceptance, love and hope and face each day with “What’s next.”  These are my circumstances; it’s up to me what I do with them!

every min angry quote

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The Gift of Illness: A Re-Invention of Self

"See simplicity in the complicated Achieve greatness in little things." {Lao-Tzu}

“See simplicity in the complicated
Achieve greatness in little things.”
{Lao-Tzu}

There are two ways I can look at my illness: 1. “It was the end of my world” or 2. “It was the start of a Brave New World.”  Today, I choose option #2.  The option of Hope, hope for a new world, a new beginning.  I am in no way trying to profess that this was an easy choice!  I lived with both perspectives and took time before making a final decision.  I don’t think I would be in the place of peace I am today if I hadn’t lived with both the Paths of Despair and of Hope.My hope lies in the recognition of an opportunity to reinvent my life. 

I can actually have gratitude for my chronic illness today (imagine that!).  Because when I look objectively at my life “in the now,” I have been afforded opportunities to discover and develop parts of myself I didn’t even know existed before.  In saying “before,” I mean the time before my autoimmune disease (Polychondritis, Fibromyalgia, Migraine, Chron’s) stopped me from working, and let’s be honest, engaging in most of my previous activities.  In this “T.B.,” I was a Type-A, “go, go, go girl!” I was (egotistically) proud of my ability to multitask and juggle all parts of my life, during all parts of my day.  No breaks! Believing all that “idle hands make idle minds” crap. I mean, really, what was I constantly rushing around for?  Sure I received accolades and “atta girls” from all facets of my life.  But, in the end they were just words; words with no real meaning because they didn’t originate from within me.

Lately I’ve begun to look at this change in my life differently…

I’ve started to celebrate the fact that I was given the gift of reinventing myself!  I look around and see most people on the same path for 40+ years of their adulthood.  And many are content with their journey. But few, too, are afforded the luxury of stepping off the established path and taking side-trails until they re-discover a new route that fits for the next phase of their life.  Luxury?  How can I call chronic-illness a luxury?!  Well, for as much as it has taken away from me (which is plenty!) it has returned, just in different forms than I was used to.  It would be (and has been) easy for me to overlook these new “gifts” ahead of me because I am spending my time looking back at all the things that have been stolen from my life, on a constant hunt to retrieve that which has been lost.  It’s not atypical to be stuck on what once was and is now gone; because trusting in an unknown future is a far scarier prospect.  But this approach only caused me constant emotional pain, regret, sadness, and emptiness.

Then, one day, I decided to look forward. I picked up one of these “new gifts” lying in my (new) path and opened it.  Inside I discovered an opportunity to awaken my inner artist.  It came in the form of a night nurse who suggested I begin beading to pass the time during my lengthy hospital stays.  I was quickly hooked, finding this quiet, meditative activity deeply soothing to my mind and pain fluctuations.  In a short time, I was selling my creations out of my “hospital room storefront” (no joke!) to all the staff.  This first step on this Road to Artist boosted my confidence and helped me to feel productive again.  The best gift was the positive energy I gained and shared with the influx of visitors coming in and out of my room, nurturing my own Soul Beacon of Hope.

After veering off what I thought was going to be “My Path for Life,” which I blamed my illness for taking from me, I realized the first step was the hardest.  I’ve taken many breaks along this new way, some chosen by me and some chosen for me by my ailing body.  But when I reflect on the anguish I first felt at “losing” all the things I thought made me “me” and then I fast forward 7 years to today, I discover that I am now an artist, a writer, a truly present friend and wife, a seeker of peace, a role-model of hope and acceptance, and a Survivor!  I started to look at all things I’ve gained.  No, none of those things would be placed on a resume.  But for me they are far greater accomplishments than all of my professional and schooling achievements.  They are my re-invention of self!

Just the other day, in the midst of painting, my husband commented, “You know, in a strange way, you getting sick was a blessing.  You would never have become the artist you are today if you had continued to be so consumed with work.”  And he’s right!  It used to be hard for me to recognize that a blessing of this magnitude could arise from such severe, sudden illness.  Oh, I’ve always had a hopeful heart and been able to recognize small, daily gifts of gratitude, from a helpful friend to a stunning sunset.  But, again, this was gratitude for all the things outside of me.  To have gratitude for what’s within me?. . . now that’s a truly miraculous discovery!

I was able to pursue a solid career in early childhood education for 15 years.  Now, I am on Re-Invention Phase Two: becoming both a Creative Person and a Beacon of Hope for others. Herein lays the miracle: I can reinvent myself again at any time! It may be self-directed or Universe-directed, but either way, I am staying open to the change. And am embracing the NOW… where I can truly find gratitude in being sick!

Down The Rabbit Hole . . .

down the rabbit hole

Yesterday was my birthday.  My mind naturally traveled to the past while reflecting on the present.  Where have I been?  How did I “get” to this place in time? What experiences have shaped the woman I am today?  At certain times during the day, I found my thoughts tinkering with my history; pulling the dusty boxes of memories off the shelf and peering inside them.  Some were filled with joyful adventures, parts of my life that feel like an exotic dream (I did that?  I was capable of that feat?!)  But, there are, too, those memory boxes filled with reminders of the intense medical experiences I have had over the last 7 years in particular.  7 years!! No wonder, at times, I feel like I fell down the Rabbit Hole only to emerge, like a science fiction character, in some distant, unknown future land, future time.

Cue “flashback music” . . .

I was 34 years young, struggling with increasing pain and rheumatologic symptoms, fighting for years to get a correct diagnosis.  I finally received same; I was told I had a rare autoimmune condition called Relapsing Polychondritis.  Upon research, I discovered a mere 600 other souls had this same disease as me, and that over half of them had been treated by one particular doctor, David E. Trentham. Behold!  He was a scant 6 hours away in my old stomping ground, Boston.  We were excited to both discover this resource and to also have it be available to us in the land we called home for many years.  Road-trip!!

I was quickly accepted into his office and appointments were lined up, plans made, suitcases pack.  We hit the road with hope for my medical future, the first time in a long while we felt this way.  Of course, my array of symptoms being as varied as they were, I was also experiencing some abdominal discomfort that was unusual at the time.  It was waxing and waning, causing sharp, stabbing sensations along with bloating.  Two days before leaving for Boston, the pain was becoming more unbearable, and, hence, more concerning.  I left a message with my primary care doctor about my concerns and when he called me at the end of day, he was brief and extremely abrupt.  He started with a quick over the phone diagnosis: “Sounds like you have a UTI.”  I explained that this felt nothing like a UTI, and he interrupted with the following extremely unhelpful (and unethical) statement, “Well, I don’t know what I’m supposed to do for you.  I’m leaving town in half an hour for a conference.”   Again I tried to get my concerns across, and discovered he had hung up on me after declaring his scheduling needs!

The following morning, the symptoms had increased and I called my primary’s office back to get an urgent care appointment.  Upon seeing another doctor in the practice, he had noted in my chart that my regular PCP thought I may have a UTI.  He commenced with a pee test and instructions to call back; visit over. I sat there with my shirt pulled up, saying, “look at how distended my stomach is!” He never examined me and advised me that if I continued having concerns, he was now passing me off to my GYN.

Well, I certainly did “still have concerns!”  Soon as I got home, I called my GYN.  Now, I also have a history of ruptured and invasive ovarian cysts, so I thought this could be a definitive cause of my symptoms. I spoke with my GYN over the phone, and he too acted like an alien had taken over his mind.  He kept saying, “Sounds like you’re constipated!”  “Nope,” I replied, “I’m pooping regularly.”  “Well, I can’t get you in to see you. So drink lots of water and take a brisk walk!”  I found out later this “brisk walk,” literally could have killed me.  What was wrong with the world today?!

Over the next several days, we traveled to Boston where I met with Dr. Trentham. I only briefly mentioned my abdominal symptoms because I had been told they were “no big deal” and wanted to maximize my time with him discussing the Polychondritis.  But, some funny things were happening… he had ordered a spiral C/T to diagnose cartilage damage in my trachea, and they had discovered “free air” between my lungs. Not a typical finding! As well, my “tummy crud” was getting worse and more frequent.  Dr. Trentham arranged for us to see a pulmonary specialist in Boston in one week’s time. We returned home to Rochester in the meantime.

During the next several days, I called my GYN again with the C/T findings, etc. (after a scheduled appointment with NP in that office was cancelled… by them!) and requested an ultrasound.  They said there was no time before I returned to Boston. So, I took matters in my own hands and scheduled one with no problem. On this imaging they discovered large amount of free air in my abdomen.  Another red flag, doctors!

Now, here comes the Rabbit Hole…

By the time we got back to Boston, 10 days after my symptoms had started, my stomach was 7+ inches distended (!) and I would be gently (not briskly!) walking when I would double over in pain and almost pass out.   I remember lying on the hotel floor imagining myself pulling toxic goo out of my stomach.  I took my hands and drew all this crud to my belly button and out; I could picture green globs trapped in bubbles, heavily floating away, which I would then shoot with my imaginary Annie Oakley gun into oblivion. I truly believe this intuitive visual exercise prolonged my life!

Friday morning arrived, the day of my pulmonary visit, and I was now hallucinating.  The pink and green swirled hotel carpeting would take life and dance before my eyes.  Lightning bolts of pain flashed across my belly. But, for some God forsaken reason, I kept trucking along, even going as far as completing my pulmonary function test in this “altered state!” It was two pulmonary fellows who would in the end save my life.  They came in to exam me, and upon reading my C/T scan and physically examining me (what a novel idea!), they immediately told me I had to rush to the ED; this free air was not from my lungs, it was coming from my abdomen. Not good. Not good at all . . .

I then found myself all alone in the ED department; my husband off to check into our hotel.  By this point, it is like I had eaten a pound of psychotropic mushrooms; faces are melting, walls are breathing.  I am living in the middle of a Dali painting.  I can tell I am going to pass out any moment if I don’t get help, so I start the long journey from my seat to the desk. I am walking like Gumby, rubbery legs and arms struggling to remember the simple act of taking steps. With each exaggerated stride, people’s faces were like cartoon characters, enlarged heads and distorted features leaning into my face and then away. It was like looking through a fish eye lens.

Well, I made it to that desk, and they immediately placed me a on a gurney.  By the time my husband returned, I had learned I was a “very, very sick young lady who was extremely lucky to be alive.”

My colon had ruptured (perforated) and I had been septic for 10 days!  Basically, a medical implausibility. I learned that this was like a person walking around with a ruptured appendix for over a week.  But, being my colon, which is the last part of your bowel, I was filled with feces and infection (hence the infamous “green goo!”). The doctors felt the only thing that had kept me alive was the fact that I was on 80mg. of Prednisone daily at the time for my disease (about 16x a regular dose!).

Then, we received the most harrowing news I had ever heard (up until that point) . . .

It was around midnight, I was on deck for the next available OR room.  The resident came in and asked Dave and I if “we were prepared?”  We replied that, yes, we’re all “prepared” for surgery.  And she shook her head.  “No, I mean, have you said your goodbyes?”  We sputtered, “What?”  “You have to know, this surgery is extremely risky and your wife is incredibly sick.  She is dying and there is only a 10% chance she will make it through the night.”  10%!  But, we did not say good bye.  We said “I love you.”   We said, “I’ll see you in just a short bit.”  We believed.  We had hope.

This was only the beginning of a 5 year saga, one that will come more and more into the light as I write my blog, I’m sure.  But, as I am reflecting on the anniversary of my first birth, I also remember the times I’ve been reborn since.  I know there are angels watching over me; there are so many ways I was “saved” that fateful night.  But, I think the strongest medicine, was already inside me.  I refused to take the doctor’s (inept) assessments at face value without advocating for my own care.  I believed I was ridding myself of toxins lying on that hotel floor.  And I had unwavering faith that I was going to make it through that night.

So, I may have “lost” half a decade or more to this one crazy chain of events.  But, I’m alive today to tell my tale.  I’m alive today to pull myself out of that Rabbit Hole and into the Light of Life!