Tag Archive | Autoimmune Illness

Feeling Free to Say “I Am Less Than Able Today”

Image by Lori PortkaWhy do I still feel embarrassed to express to my “well-bodied” friends that I am less-than-able on many days? Partly, I struggle to find the right words; the delicate balance between clear explanation and what I fear may sound like whiney complaining.

And then there is the bigger problem: the fact that I look so well. Especially on the days that my friends do see me. Because it is the days that I feel well enough to wash my hair (perhaps!), put on some makeup, get out of my lounge clothes, smile, and be present, that I also am able to keep my plans with them. They’re not seeing me on the days when my arms feel like 20lb. weights, too heavy to lift and brush the bed-tangles out of my hair. Or when I am still wearing what I woke up in, which many times even means what I went to bed in, because I was too exhausted to do anything but take off my bra the night before!

And truth be told, the sound and timber and strength of my voice doesn’t often change that much when my physical body is feeling poorly. And for me, my larynx can be in spasm causing hoarseness when I do feel well. So since that’s such a poor barometer for “feeling well vs. feeling poorly,” why is it then that people seem to think that what they hear over the phone lines is some sort of truth serum?

How many of you have heard those dreaded words, “Oh, but, you sound so good today! I’m glad!”

Unfortunately, they are often spoken before I’ve even had a chance to say how I am truly doing. So, I hesitate. Because it gets tiring saying, “um, thanks. But, actually, I’m not doing so hot today.” And even with my most well-intentioned friends and loved ones, I sometimes hear skepticism creep into their response. Because it just doesn’t make sense: but they sound so good…?

I share this all because I think it is a helpful reminder for anyone: both those of us struggling with day-to-day- fluctuations in our physical (or mental) capabilities and for those who are friends to, family members of, or caregivers for (including professionals) those with these “Invisible Illnesses.”

A quick reminder: Invisible Illnesses encompass a wide range of conditions and diseases. Take the common condition of arthritis, even. Yes, a joint could be swollen or red, but many times it can ache with no outward physical manifestation. So now think of all the conditions that effect our “internal systems,” from brain chemistry, to GI disorders, blood, vein and heart conditions, nervous system pain and disruption, connective tissue deterioration… the list goes on and on. These are the “Invisible Illnesses” that hide behind an external mirage of wellness. Wouldn’t it be handy if when something was ailing or failing on the inside, a bright red “warning spot” would emerge on an external location?! I sure would find this handy! Not only for letting others visibly know something painful is going on, but also to help pin-point for both myself and my doctors, what system is causing the pain.

Since this warning system technology is yet to be invented, we have to trust what people say. To take them at their word. You don’t have to completely understand what someone is describing to give them love, support and empathy. And unconditional trust in their word.

Sometimes I worry (too much so) that the person I am sharing my ills of the day with will think I am only saying it to get out of seeing them. At least for me, this is never the case! In fact, I am one to mask my true feelings of pain and discomfort just to avoid hurting or disappointing another. I know I am not alone in this.

So what can we all do as a collective group who cares for one another, to combat this?

For the “well-bodied” loved one:

  1. Don’t Assume: Don’t assume just because we sound okay, or even because we look okay, that we feel okay. Don’t assume that because we were able to yesterday, we will be able to today. Or even, if we were able 15 minutes ago, that our bodies’ are still feeling as abled in This minute.
  2. Listen: Please ask us how we are really doing. And then give us the space to truthfully answer. Take our answers at face value; please don’t judge or question (or fill in the blank!).
  3. Don’t feel like you need to fix the situation. All we really need is acceptance and acknowledgement: “Wow that sounds hard/painful/frustrating. I am sorry you are feeling so lousy/cruddy/down today.”
  4. It’s okay to ask “Is there any way I can be of support to you/help you right now?” But also know that we may not have an answer for that. It’s not that we don’t want your help (and I always like hearing a sincere offer from a friend), it’s just that: 1. We may not truly know of any way that you can help right now and 2. Many times all we need is space and time to heal. Which leads me to…
  5. Give us space without expectations. We know (believe me!) how hard it is to accept that there is no clear pattern to our symptoms. We may feel better in 1 day, 3 days, maybe even 30 minutes and that can be frustrating. So we just ask for your patience as we navigate the unknown.
  6. Don’t stop asking. This is a big one! And I don’t mean “don’t stop asking how we are doing” (although that’s a good thing, too); I mean don’t stop asking us to do things. Because there still are many days when we are able. And spending time with you, helping you out and supporting you, still means a lot to us. This is what feeds our soul and keeps us striving to be and get well.

Now, onto the “Invisible Illness” group:

  1. It’s Okay. You’re okay. You are whole and complete exactly as you are. That was hard for me to write, because I am not just saying it to you, I am saying it to myself. “I am whole exactly as I am.” You/I/WE do not have to be anything other than what we are capable of being. We did not create these illnesses nor are we using them as a crutch to “get out of things.” They inhibit what we can do on a daily business, but they are not the all of us.
  2. We are not defined by our illness. Our friends like and love us for who we are: the pure essence of us, our true spirit. Not for our physical abilities or dis-abilities. And if that is how someone defines “compatibility” in a relationship, they are not the kind of supportive friend you need, or deserve.
  3. Speak your truth. Don’t sugar-coat the situation. You don’t need to go into great length or detail (unless you need/want to). Just be clear and concise. Remember we are speaking a language only other people with chronic illnesses can understand. A friend of mine with varying daily abilities can say just one word to me, or give me that look, and I get it. It’s not going to be that way with all of our friends and caregivers, so…
  4. Be patient. You may need to explain your daily needs and limitations over and over again. This can feel frustrating or maybe even like the other person is questioning your authenticity. In most cases, this isn’t true. Remember: it’s a foreign language, and people don’t learn to comprehend a foreign tongue overnight! Most times, our loved ones keep asking questions, only because they want to understand.
  5. If someone asks how they can help, and you can think of a way, ASK IT. Don’t be stoic. Don’t hope that they’ll just guess at what you need. (How could they?!). And don’t ever feel embarrassed. This last one happens to me. Because I start to think “But, I should be able to do this.” Trust that if someone offers to help, their offer is sincere and that if what you ask for is too much for them, they will let you know. Think how helpful it would be to have someone cook you a meal, or run an errand/do a household chore, or even help you to color your hair.
  6. Remember that friendship is based on unconditional love. Our friends and lovers chose us for the person we bring out in them, just as we love them for the person they bring out in ourselves. We are all here to be our best selves, but that does not mean trying to be something other than you are. Or can be, physically. There is more to you, there is more to me, than our physicality.

It is up to all of us to spread the word on Invisible Illnesses. To take the stigma and mis-understanding out of them. Because millions and millions of us walk around looking “just like everyone else,” while on the inside of bodies are crumbling.

The first step to undoing all the misconceptions around these illnesses, is to start with a deeper understanding of each other, on a one to one basis. Which includes a deeper understanding of our own needs and abilities, followed by acceptance of same. It’s time to embrace all that we do bring to the world rather than all that we do not!

Chasing The Elusive “WHY ME?”


Inevitably, at some point in time, after receiving the news that one is facing a long-term or chronic illness/disease, comes the elusive question of ,”WHY?!” For some, this may be a fleeting call to arms, for others, it becomes a constant refrain of, “Why?” or “Why me?” or even “Why, God, why?

During my last hospital stay, the progressive pastor of my family’s church came to visit me. After the necessary check-ins were taken care of, he turned toward me, and simply asked, “Do you ever find yourself questioning ‘why?’.” I have wondered since what direction he was taking the conversation in, if he had any expectation of what my answer would be. But this has been fleeting, because in all truth, I think he was just curious.

In that instant, though, there was no hesitation; I didn’t even pause before responding: “Yes. I am sure I have asked, ‘why?’ at some point in this long journey. But I have quickly discovered that this is a fruitless pursuit; a question without an answer; a path that only leads me to remaining stuck in the miserable moment.”

But that conversation has left me with equal curiosity. What is the point in asking, “Why me?” in the face of any number of events (I’ve heard this turn of phrase applied to everything from an unexpected car repair bill to a diagnosis of cancer), when one could just as equally be asking, “Why not me?”

The relentless lamenting over the “why” produces an on-going cycle of strife and depression. How could it not? There are no (satisfactory) answers to this perennial question. But there are concrete, solution-oriented, answers to the question of “What next?” We don’t know the why, yet we do know the how. It’s what we do with the how in the now that defines us.

I know I am sick. I know that there is currently no cure for my autoimmune condition(s). I know that my disease will continue to progress, causing a ripple effect that may require future surgeries and invasive procedures. I know that the mountain of daily meds I take to treat my diseases and conditions also create an equal amount of unpleasant side-effects; and that it is difficult to separate the two apart.

But I also know that I am a fighter. I am creative in the face of challenges. I discover new pathways when faced with a seemingly impassable road block. I am a giver of light, love and energy. My mantra is “Hope.” I know that I do not have to face this life alone, unless I choose to isolate. Which I do not.

This is where I can put in action the “What next?!”

Each surgery may chip away at the person I used to be. But that’s the key, used to be. Not the person I am now. Life is not stagnant and neither am I. In the course of my conversation with the pastor, I shared my views on the River of Grace that flows through me, receiving energy from beyond, recharging my own Soul Beacon, before continuing to flow out into other souls around me.

He smiled and said, that sounds like what Jesus speaks of in the bible, “Our Well-Spring,” that source of God that flows through each and every one of us, just waiting to be tapped into.

I have heard many people refer to this well-spring in their own words. I have heard it be called: Universal Energy, Chi (Qi), Kundalini, Indomitable Spirit, God’s Grace, Life Force, Eternal Flame, and many other monikers.

For me, it is my River of Grace. Because a river is an ever-flowing body of water, that both draws from many sources (is not a singular entity) and pours itself into (nourishing) many other bodies of water. Rivers are not stagnant, they are an ever-changing and evolving path through life. And water is our life’s breath; we cannot survive without it and 2/3rds of our bodies are made of it.

My River is a well that never runs dry. Yet, it is my responsibility to drink from it, to pull from it to renew my spirit when it is lagging.

Which brings me to the Grace part. I think of grace as a gift. As the ability to look for the light in a sea of darkness. To see beauty and gratitude, no matter what the situation. To ask “what’s my next step” instead of getting stuck on the repetitive refrain of “why?!?”

And then I decide to look up the official definition: Grace: “unmerited divine assistance given humans for their regeneration” (Meriam-Webster). To merit something, is to earn it. You don’t need to do anything to earn, or to deserve, grace. It’s there for all of us. A gift from beyond ourselves, to regenerate the mind, body and spirit.

We have all experienced unexplained loss, devastating, mind-numbing losses. We have all had to endure unnecessary pain, physical, emotional and/or metal. Or had to witness, powerless, as a loved one is faced these. We have all encountered enumerable challenges, obstacles and sudden change.

These experiences are what define us. It is what has defined me.

But I have also chosen not to have them be the all of me. They are one part of my story. They are U-turns on the path of my life. And instead of sitting down in the middle of the road and stopping, staring befuddled behind, below, and around me. I’ve decided to look straight ahead. To tap into my River of Grace and chart a new course.

This attitude has carried me and allowed me to see my life as full of opportunities. To say, “What next.” Instead allowing myself to feel victimized, always the punchline, left lamenting the “why?”

Think of one area in your life where you can flip your knee-jerk response of “why?” on its head. Start small. See how this one shift in attitude affects your whole day. Your whole week. Your attitude and out-look on the things that come next.

And if you already embrace an attitude of “what next,” please share your experiences so that they may inspire and encourage others!

“What Goes Up Must Come Down”

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“What goes up, must come down.” These lyrics keep dancing around (banging around?) in my head.  They seem to be the only thing that accurately describes my current state of being. And let’s face it, my life in general.

Once again, the rug has been pulled out from under me. I felt like my life was traveling in an upward momentum. With starts and stops along the way, of course. But, truly could I expect anything less? Still, generally moving in a positive direction.

After such a struggle throughout the fall, with a constantly flaring body unresponsive to current courses of treatment, unrelenting fatigue, and an onslaught of back and forth calls to insurance pleading my case, there was finally some light at the end of the tunnel: infusion treatments were finally approved, literally in the 11th hour.

I began my Simponi Aria infusions around Christmas and experienced immediate improvement in my symptoms. My morning stiffness went from 3 hours to 2 and even onto a mere 1 many days!! My fatigue was abating and I was able to participate in multiple family gatherings without weeks of post-event “crash and burn.” It was a gift. It was a miracle!

I anxiously awaited my second infusion and experienced similar success, even a tad better this time! We may have finally found something that treats my autoimmune illness,” my heat sang with glee!

Visions of days without pain coupled with participating in, instead of just sideline observing my life danced in my head! I even allowed myself to daydream about a future of renewed productivity and purposefulness.

In the last couple of weeks, my body started to crash again (hence the lack of blog posts); locking, swollen joints, pain and fatigue. But this time, I was happy for the symptoms. Strange, I know. But they were clear indicators that the infusion indeed was working because I was on a downward trend heading right into my next scheduled infusion…

This Monday! Hooray!! I can’t wait! Bring on the relief!

But, then, remember the second half of my opening refrain? …

“…Must come down…”

And, come down it has. Crashing down.

Today, was my first follow-up with my rheumatologist since the start of the new infusion treatments.  I gave him the same low-down I just gave you. And he looked sad. Defeated.

“Has the billing office contacted you?” he tentatively begins.

“Guess they’re leaving it up to me to be the Bad Guy.”

What? What is he trying to say?! My heart begins to sink. Am I hearing this right?

Both Medicare and my (supposedly “super-duper”) private secondary insurance suddenly decided to retroactively decline my treatment.

“Its off-label,” they tsk. Tsk.

Well guess what numnuts?! EVERY medication I take is off-label.   I have a RARE disease that does not get studied because it is not profitable for the drug companies whom sponsor said studies. Never mind, that my disease, Relapsing Polychondritis, has an extremely high mortality rate in untreated cases (before discovery, most people were diagnosed post-mortem). Guess they don’t care when it’s only a 1000 people in the U.S. population.

So, now, not only have they denied any future treatments, they have also reneged on payments due for treatments already administered! That’s 2 infusions at the “cut-rate” price of $10,000!!! How can that even be ethical?

Doctor: “Legally, you could be held financially responsible for this amount. Ethically, I could never allow that to happen. And, we could continue treatments if you have a bunch of cash lying around to pay out of pocket.” Wry smile.

Full disclosure here: I just did our taxes and guess what? My husband and I currently bring in a combined annual income of a whopping $33,000! So, yeah, I don’t think so.

So, bottom line… it appears that insurance (or let’s face it, in this case, the government), feels it is more cost effective to keep me chronically ill (meaning more urgent care costs, hospitalizations and the such, in the future) and unable to have gainful employment (requiring on-going SSD payments), then to pay for a medications that will treat my disease (now) and prevent the progression of it.

What kind of upside-down world do we live in?

But, guess what? The ball has once again landed back in my court.  And what choice do I have but to evolve and adapt once again? To reassess life and the options it presents me, to pick up the pieces and try to build something worthwhile out of the rubble…

And I will.

But, for a short bit, I just want to have a pity-party.

To whine, “why can’t anything ever be easy, or at least simple, for me?!”

Because it just is NOT.

There must be some major life lessons I’m supposed to learn this lifetime around.

They say that when you pray for something, God doesn’t give it to you, he (she) gives you an opportunity to develop that skill. But did I really need another chance to practice Acceptance. Resilience. Inner Strength?

It feels like I have enough of that to fill 10 lifetimes.

Sigh.

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!

It’s Been One of Those Weeks!

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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.

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!

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