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To: Chronically Ill at Christmas Love: Peace

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As the holiday week began in earnest last night (for both Christmas and Hannukah), I send extra love to my friends with chronic illness. As one friend recently reminded me, constantly fighting this sh*t is HARD!

Which made me think… at least 15% of society does not get any holiday time-off. Yet friends and family, and lets face it, ourselves, have pretty high expectations of our energy and ability to engage in all the same activities we used to do, pre-illness.

Living with chronic illness is a FULL TIME JOB. No holidays “off,” no vacation or calling in a “me-day” on accumulated sick days, no summer vacation, no breaks for our birthdays.

I certainly don’t mean to be morbid! I am just standing in solidarity with my chronically ill brothers and sisters. Because we still try to put on our Santa hats and reindeer bells and look festive on the outside while we feel awful inside. Our hearts want to receive each and every hug, but our bodies pray for not another pain-full squeeze.

For me, my body tenses up. Its almost like an unnecessary fight or flight reaction. So that I many times don’t feel the overwhelming fatigue and pain until I sit down at home post and my body desperately goes into spasm.

So please remember this holiday:

We may need to be selective about how many events we go to in order to conserve and stretch out our energy reserves (our “spoons”).

* We may skip the more crowded events in exchange for more intimate gatherings. Large groups can by over-stimulating and overwhelming and very fatiguing.

* Our schedules may seem unconventional. This year for example, I did church on Christmas Eve with my family, and then we’re not exchanging presents until the 28th. My husband and I cap off the holiday week with celebrating Our Christmas on New Year’s Eve and Day. Its not like I can go out on the town to ring in the New Year anymore!

* The hardest limitation I’ve had to enforce, is cutting out friend activities: Friendsgiving, White Elephant and Secret Santa, Cookie Exchanges, … In exchange for being able to participate in family celebrations.

It has taken me many, many years to come to this balance. And I still struggle with missing out, and even worse, disappointing those I love.

Family and friends can be so incredibly understanding and supportive. As long as I explain the place I am coming from. And the very few that don’t, aren’t worth any of your energy.

Am I miffed at my illness. Hell, yeah! It’s a freakin’ 24/7 job. I can’t take my body off, like a scuba suit, and set it in the corner for even a 5 min. break!

Do I feel melancholy? You bet! I miss walking through cities and malls to look at the holiday displays with Christmas music floating all around me; joining the local town Christmas strolls and tree lightings.

BUT I REFUSE TO LET MY DISEASE TAKE ANY MORE OF MY LIFE! I love Christmas! So I’m not going to compare what I can or cannot do. I am going to appreaciate the beauty of every moment I AM well enough to experience. No matter how small. We have been given one special gift through illness, to recoginize hidden hope and miracles that others miss.

So to my over 15% of FaceBook friends (that I know of) with daily chronic illness, you are not alone! We celebrate  together!!

And to our friends and family, thank you for you understanding, your patience (especially when we’re running late or cancel last minute), for your gentle hugs, and comfiest chairs. We feel grateful for every moment we get to spend with you!

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Lighting the Unknown Path

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As I have said before, it is the “unknown” that is always more difficult than the knowing. The waiting. The wondering. The wandering… of the mind as it tries to grasp on to something concrete.

My last several months have been spent in this suspended state. First we found out that our home of 15 years was suddenly being sold and we had to, in weeks time, find a (hard sought after one story) home, apply for a mortgage (which had become a Big Scary Monster in our heads), sort and pack through years of our life and family “heirlooms,” find the means to buy (and fix up) said house, move and settle, the list goes on.

The only way I survived this process was JUST doing the next right thing.  Nothing more. My husband’s anxiety would reach new and alarming heights and I would have to remind us both, “okay, let’s take a breath. Now, forget ‘The List; ‘ what’s Just ONE Thing we can do in this moment?”

And you know what? One (baby!) step at a time, we walked our way right through the scary terrain of the unknown and into our brand new home.

These are the lessons and skills I so desperately need to remember to apply to my life now.

Because just when I thought I was leaving the path zig zagging through The Woods of Uncertainty, I fell into a Bog of Burdensome Worries! (Didn’t mean to go all Tolkien on you!).

I’ve known since fall that my body was heading into unknown territory again. It’s both a blessing and a curse that I am so in tune with my physical being after years of severe illness and trauma, that I can tell as soon as I start to go off-kilter.

This time, I knew somehing major was brewing.

So, instead of going to the doctors with these worries  (although I didn’t sugar coat my concerns at my appointments either), I turned to internal pep talks, such as: ” Hey, dear body of mine, I know you are giving me warning signs that you’re failing in new and different ways, but could you just please hold on until March? And then I promise I will attend to all of your needs with the upmost of care!”

That wasn’t too much to ask, was it? Guess it was!

Because my “gift” for Christmas Eve was to wake up without the use of both my legs. Totally and completely, from the hips down (yep, includes the bladder, too!). What fun!! For two days, I could  not walk and afterwards, I had complete numbness, like my legs had fallen asleep and could not be stomped, shakened or rubbed “awake.”

Yet, did I go to the hospital? Nah! I had a host of “good” excuses… “It’s the holiday; it’s a weekend” and the creme de la creme: ” I just don’t have time for this right now!”

So my body went from flashing yellow to a blaring red : STOP!!!!!

A little over a month ago, I was reading when half the page disappeared. No joke. I could only see half of every word. A very strange and scary experience. So I shook Dave awake with a, “Honey, I need to go to the ED.” Complete resignation. No questions anymore.

The details since don’t matter as much as the lessons I’ve learned. But in brief, I am in an even deeper state of limbo… not quite knowing the true cause of my weakness and Optic Neuritis (the partial blindness ) yet (MS? CIDP?) and therefore not able to receive the right treatment aside from high dose IV steroids to abate my symptoms.

So nothing left to do but Surrender. Wave the white flag of blind faith (literally this time!).

And to reach out for help. I already feel physically vulnerable, so why is it still so hard to completely crack open and be emotionally vulnerable, too?

If anything, this move was a great practice lesson. My husband is the first to open his door to others when they need a helping hand, but he latches every bolt when it comes to receiving help for his own needs. This time I didn’t let his fear of “not seeming like enough” dictate our choices and I threw open every door and window wide with a sign hung proudly, “HELP NEEDED WITHIN.”

And my friends and family showed up. They packed, they listened, they moved, they cleaned and scrubbed my new abode. All with a smile and an encouraging hug. No expectation of return payment.

This move would not have been possible without this team!

So why should my health be any different?! I need to throw out the old skipping records that get stuck on the refrains filled with shame. Shame over my diseases, over my needs and inability to “do it all” for myself; shame over what I used to be like vs what I am like now; shame over always needing more.

But, most of all: FEAR. Fear that I won’t be able to give back. But we all have our own gifts to offer to the world. And for a long while, mine were coming in the form of my words; of being completely vulnerable through my stories. Through sharing with others and having them, in turn, share with me.

But as soon as life became overly tangled, I stopped writing. Which essentially dammed up my River of Grace… the universal energy that flows into, through and out of me… on to you… connecting all of us on this divine journey of life. So that WE ARE NOT ALONE.

So I think of Buddha’s quote, “if you light a lamp for someone else, it will brighten your own path.” And it helps me remember that whenever someone “allows” me to help them, it always feels like I am the one receiving the gift!

So while my path is now being illuminated by the inner light and energy from other’s  (as I write a dear friend is coordinating meal help for us; fulfilled by those who know me and others who are doing so purely as a random act of kindness); I am holding out my own candle in hopes of lighting just one other’s dark path of the unknown.

There is so much going on beneath the surface of each of our lives.  Let’s look just a little deeper inside.

I know I’m grateful someone stopped and did so for me. All while holding a candle to help light my way, as I take just one next step forward along the path. For as long as I’m moving forward, I’m heading in the right direction.

Namaste.

National Rare Disease Day: Effects Us All

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An estimated 25 million Americans have what is considered a “rare disease.” I am one of those lucky few people. Actually, a whopping 5 of my diagnosed conditions are considered rare: Trigeminal Neuralgia, Sjogrens, Vasculitis, Gastroparesis/IBS and the “Big One:” Relapsing Polychondritis. To be qualified as “rare” the disease has to effect fewer than 200,000 people. Relapsing Polychondritis effects only 3.5 people per million, making it an extremely rare disease. Yippee!

Why is it important for you to be aware of rare diseases? We all know someone with a rare illness, even if you don’t realize it… for many it is as close as a dear loved one, for others, a co-worker or neighbor. Rare diseases impacts us all. 1 in 10 Americans has a rare disease. Many are disease names that would sound completely foreign. But others are startling familiar; all but a few cancers are considered “rare.”

The biggest challenge of living with a rare disease is treatment. Very little research is done on rare diseases and therefore most treatment options are considered “off-label.” More and more insurance agencies (especially Medicare and Medicaid) are beginning to deny these treatment options. I am all too familiar with this struggle:

One year ago, I started an infusion (IV) therapy that was showing remarkable progress in the decrease of my symptoms and increase in my quality of life. I was hopeful about my disease and the possibility of remission for the first time in a long time. Then on the eve of my third treatment, the doctor notified me that my insurance decided to deny the treatment because they could not find any research on record of it being effective (obviously!). They not only halted all future treatments, they retroactively denied the treatments that had already been given, totally ~ $7000!

I have tried to appeal this decision, get help from government agencies and representatives, receive grant or medical support funding, and to find clinical trials I qualify for. All to no avail. There are many trials being conducted with this particular medicine, but all are on already studied and established diseases.

Beginning this calendar year, I have run into the same situation, but now with drug options that I have been receiving for long periods of time, all shown to be effective in my individual care. But these documented facts are not being taken into account. And my medical insurance is either denying them, or placing such high deductible payments on the prescriptions that I can no longer afford them.

For some reason, the insurance community has yet to recognize that by denying these effective, albeit unstudied treatment options, it is only increasing the cost of medical care in the long-term as my, and millions of others, diseases rage out of control.

This same situation is happening to millions of Americans. Most likely someone you know has experienced this. We all know someone battling a rare illness, even if they are living in silence with it. Currently, there are about 7000 rare diseases… and less than 400 FDA-approved treatments. Just pause and think about the impact of that for a moment.

This is why rare diseases are often referred to as “orphan diseases.” For we have been abandoned by the medical, insurance, and pharmaceutical communities.

People with rare diseases have difficulty obtaining an accurate diagnosis, and oftentimes wait 3-6 years to receive any diagnosis. But that’s just the first hurdle, because once a diagnosis is given, it can be even more difficult to find a doctor with experience and knowledge to treat the disease. For me, I have to see a myriad of specialists who each treat one part of my disease, or one set of symptoms. They rarely communicate with each other (if at all) and no one doctor is looking at the “whole picture.” Many times, I am the one educating the medical provider on my disease. This puts a lot of pressure on the patient to be their own advocate and teacher. It’s exhausting!

This can all begin to feel overwhelming. And you may be wondering how on earth you can even make a dent in this problem.

Well, today is National Rare Disease Day. An event that is really only in its infancy, but growing globally every year. It began in Europe in 2008 and the US adopted it in 2009. It is sponsored by NORD (National Organization for Rare Diseases), who since 1983, has been the biggest proponent in the advancement of research and treatment develop for rare diseases.

This year’s focus is on recognizing the stories of those living with and alongside rare diseases.

For the biggest challenge of living with a rare disease, is not the lack of medical care, or knowledge and accessibility in the medical community… It’s actually the feeling of isolation that comes along with these rare diagnoses.
But, by sharing the stories, your own or that of a loved one; by posting them on social media; and publicly showing support for all of the 1 in 10 Americans diagnosed with a Rare Illness, you are shining a light of love, support and hope on all of us.

By bonding together, through not our individual disease, but through the collective difficulties and trials that come along with a “Rare Disease,” WE are no longer alone. WE are no longer isolated.

As the NORD motto states: “ALONE WE ARE RARE. TOGETHER WE ARE STRONG.”

You have all given me that gift over the year and a half that I have shared my journey through this blog. Thank you for that .

For today celebrates not only the super human strength of those who get up to face each day despite the challenge of their disease, it also celebrates YOU… the caregivers, spouses, medical providers, friends, and co-workers who support us and carry us through. And it is for the anonymous “kind strangers” that open the doors when we’re struggling and give us smiles of encouragement. Today is for ALL of us. For Rare Disease is not an individual problem, it is an American Problem.

Rare Disease Day Video (watch, post and share!)

To find out more about Rare Disease and ways you can help, follow the links in this blog and below:

NORD: National Organization for Rare Diseases

Rare Disease Day 2015

“Living With Rare Disease”

Dr David Trentham (article on Relapsing Polychondritis by leading physician for disease)

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!

Calling All Angels

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Just over three weeks ago, I had emergency surgery to remove a non-functioning gallbladder (another “perk” of Polychondritis, my main autoimmune disease. Yea!). My husband couldn’t help but announce repeatedly that this was now my 15th surgery in 7 years’ time(!).

The surgery went fairly well as did my initial recovery. After re-learning to walk post a 5 day epidural (I swear, I now know what Bambi feels like on those wobbly legs!), I was happily released.

After my 10 day hospital stay, I was only home for 3 days, when I suddenly developed a hot, sharp and stabbing pain in my abdomen. A same-day CT scan showed a very large small bowel obstruction and I was promptly sent to the ED, to await transfer to the inpatient unit.

This time, my stay was Hell.

It began with the placement of a nasal-gastric (NG) tube. I have always said this is the worst procedure I’ve ever undergone (and that’s saying a lot, considering all I’ve been through!). But this time was even worse. The main disease process of Polychondritis is the destruction of cartilage in my body, most prominently in my chest, ears, and nose. I already knew that the cartilage damage in my right nostril was so pronounced, it was effectively “closed for business.” And I clearly stated to the attending surgeon that only a pediatric sized tube would fit in my left nostril. Yet, she insisted in trying larger sizes first.

The doctor quickly learned that I knew my nose better than her, and had to use the smallest tube possible. Now, I don’t know a single person that feels “okay” about having an NG tube placed, so surgeons are used to complaints regarding this procedure. What they didn’t take into account was my personal history. The pain was beyond excruciating. The only way I can think of describing it is; it felt like someone had first taken a hammer to my nose, shattering the bones, and then commenced to insert (shove) a tube up my nostril, while asking me to drink water through a straw, drawing the tube down my throat and into my stomach.

This was the first time I felt “my light” go out. I felt like my Soul Beacon had been 1-blown-out-candle-michal-boubinsnuffed. I was drowning in pain and couldn’t tell the surface from the bottom.

My husband bore witness to this, and stated later that he saw the moment I let go. The moment my eyes went dull and blank. I would have done anything to make the pain stop. I was ready to trade my life for this relief.

Having these very deep visceral feelings scared the heck out of me. I started to question whether I had the strength to continue this battle being waged inside my body, with no foreseeable end. Slowly I began to fight again, to refuel my Soul Beacon from the exchange of light, love and energy with others. But I still felt dim; like my light could once again blow out with the slightest of breezes.

That breeze came a few days later when my body started to shut down. I had uncontrollable shakes, deep abdominal pain, unrelenting migraines, and spasms traveling from head to foot. I couldn’t focus on anything. There were none of my normal reprieves of drawing or writing, or reading, or even watching T.V. All I could do was lie there, writhing in agony.

I felt myself slipping away. It felt like I had one foot in this world and one in the realm beyond. One breathe from the universe, and I would blow away. Forever.

Without words, my family could tell. My husband and mother put up a barricade around me, keeping visitors away, while silently standing guard. They didn’t complain of hours spent entertaining themselves while I slipped in and out of consciousness.

And then one day, a dear friend of mine showed up unexpectedly for a visit. I whispered a request for Reiki. And while sending me healing energy, she also received messages in return:

angel of light 2She leaned close to me and told me that everything was going to turn out the way it was supposed to; that I could let go (and let God, so to speak). Then she passed on the most remarkable message: “As I have told you before, you are surrounded by angels, spirit guides and light beings that love and protect you. But this time, I felt something even deeper. There is one angel that has wrapped themselves around your entire body. They are protecting you and encasing you in love. They are only waiting for you to call on them for help and support. Use this angel. Ask for their guidance and protection.”

And with that, she left.

I was overwhelmed. If I let go, would that be letting go of this body, of this lifetime? Or would the act of letting go release the tension and stress I felt over having to “keep up the fight?” Could I truly trust in my angels and guides to take care of me, to lead me in whatever direction the Universe had planned for me?

I chose the latter, to trust in this intuitive message my friend passed on. It took me a bit to even find the strength to ask for help. But eventually I did. And that’s when the miracles started to happen.

The nurses discovered that my sugars had dropped so low, I was partially going into diabetic shock. And after several bags of sugar water being pumped into me, I started to recover. Another nurse ordered me an air bed that softy pillowed my inflamed joints. And the doctors finally reinstated my medication regimen that treats my autoimmune conditions (stopped out of fear of effecting the recovery rate post-surgery), most significantly providing infusions of steroids. My body started responding in kind.

But, even more remarkably: I embraced my angel back. I called on the energies that swirled around me for support and protection. And I began to feel like I was wrapped in a quilt of love. A quilt that hugs my body, wherever I go.

I don’t think it matters what your particular religious or non-religious beliefs are. Words like “angels,” “spirit guides,” and even “God,” don’t need to be defined. They can mean something entirely different for each person. For me, they all come down to energy. I don’t believe that when we die, all of ourselves just disappear. We are made up of many charged particles. So our physical bodies may fail us and be sent back to the Earth (to be recycled and revived), but our energy, or our “soul,” stays active. For some, they may find comfort in the idea of Heaven. For me, I truly don’t know. But I do know that I have felt the energy of loved ones passed surround me at many moments in my life. They have sustained me, they have pushed me, and they have caught me when I’ve stumbled. But, most of all, they have saved me. They brought me back from the brink of death 7 years ago, when my colon first ruptured. And they brought me back this time, when my mind and body was too fatigued to continue the fight on its own.

And that’s the key: even when we feel alone, we are not. We don’t have to face life’s challenges all by ourselves. Each one of us has an army of angels, light beings, and spirit guides just waiting to be called upon.

All it takes is a little prayer or meditation. Picture yourself surrounded with light and love. Feel the energy of the universe travel from without to within and out again. We are not stagnant beings, each one of us has a River of Grace flowing with our life force within us. Some believe this river is fed by God, others Buddha or Allah, or a Higher Power. For me, it is not an entity I can name. I choose to call my source God. But my God is not an omnipotent being, it is a mass of swirling light and energy that flows around all of us. Most often, my God wears skin, as a messenger of hope.

Each day I pray to have my eyes, ears, heart and soul open to receiving the gifts and messages from God and the Universe. This way I don’t miss the miracles when they come my way.

Because of this practice, I was able to see God in the form of my friend’s words as she asked me to trust in and use my Guardian Angel.

And even a skeptic cannot argue with the outcome. Because here I am just one week later, at home and recovering, with the energy to share my story with you.

Will I be able to weather another wave of physical assault on my already ailing body? I don’t know. But, that’s the key; I don’t have to know. All I have to do is trust in the universe to provide for me, whatever comes my way. My goal is to spread this message of hope and faith to others, so that collectively, we have the energy to face life’s challenges.

What challenges are you facing today that you could call on your angels or guides to help you navigate? All it takes is closing your eyes, taking a couple of deep cleansing breaths, and then, just… asking.
What have you got to lose by trying?!

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“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.

Poked and Prodded, Jibbed and Jabbed

I realize that during the last three weeks I have been poked, prodded, squished, jabbed, plugged in, dilated, tested and re-tested.  No wonder I feel exhausted!  Since the beginning of 2014, I: have had my annual boob squish (yippee!); underwent cardiac testing; was “shot up” with my second infusion treatment (TNF Inhibitor); had an “invasive” G/I exam and tests; had the pleasure of my eyes being dilated while being chastised for not coming in annually (“you know, you do have a lot of underlying medical conditions that effect eye health”… duh!); got my monthly blood-work completed; was stung with almost 30 Botox injections in my head and neck; and then to top it all off … was submitted to two corticoid-steroid injections in my S-I joint (the hardest to reach=tailbone area) and my hip as well as three trigger point injections in my shoulder area (no numbing meds. with that one=double ouch!!). All in 21 days!

Yet, strangely, this feels normal to me. How weird is that?!

Just last week, a friend was telling me how exhausted she was.  She had just finished a day filled with two medical appointments, a flu shot and DPT shot, as well as some blood work.  And I understood!  Yet it also gave me a deeper perspective on what most able-bodied people find taxing.

And it gave me a great sounding board for helping her to better understand what my daily life is like.  Of course, I didn’t share this with her on the spot.  She had a right to her own exhaustion and some empathy from a caring friend.  Bottom line, isn’t that what we all crave?  But later in the week, I brought up her experience as a starting point…

I asked her to recall how depleted (and violated) she had felt on this day of appointments and tests.  I told her that I, more than most, could 100% relate to her experience.  Then I followed up with, “you know how you felt? Well, just to give you a little perspective, that’s what it is like for me 2-3 times a week, on an average week.”  I saw recognition light up behind her eyes.  And I realized that it is difficult for others to understand how the chronically ill feel on a chronic basis.  We all need a compass point to help guide perspective.

Another dear friend has often said to me, “I imagine how horrific it feels to have the flu.  And then I think of you, and try to imagine what it would feel like to experience that all-over pain and fatigue every. single. day.”  She sometimes follows-up with, “It makes me feel like crying.” Ah, me too.

So I realize these are all good starting points to increase the awareness of our “well-bodied” friends and family.  Our barometer for pain is at a higher set point than most.  We have to be that way in order to survive (and hopefully even thrive, at times!).

But it is also important, if we want to maintain honest integrity with ourselves and others, for us to attempt to explain what this means.  Being chronically ill is… a constant cycle of preparing oneself for upcoming doctor’s appointments and tests.  The emotional roller-coaster is taxing both pre- and post-visit: Is this the day I will get bad news or good news?  Is this the doctor that will have a new idea to help me with my illness(es)?  How many slips for subsequent tests will I leave here clutching today?  Can I even afford to go to the doctor’s today?  How am I going to get there; am I strong enough to drive myself?  Should I have someone with me so I am not the only one hearing the doctor’s words? Is this going to be another appointment with the summation, “I’m just not sure how to help you.” shrug.; Do I even get my hopes up?

Then there is the physical toll. Just getting ready for these appointments can be exhausting; sitting for long periods in the waiting rooms can be even worse.  Waiting in uncomfortable chairs (especially the hard plastic ones in the exam room!), can wreak havoc on a chronically ill body.  Then doctors like to (and, let’s face it, should be) physically examine your body, too.  Herein comes the poking, prodding, jibbing, and jabbing, all igniting flares of various “hot spots.”  Whether it is abdominal pains, muscular and joint pains, neuropathy, etc… we don’t like to be excessively touched!!   And are bodies will let us know this with a snowball effect of all over and hyper-aware pains (allodynia) throughout our bodies for several days after the appointment.

By the time we start to recover, it’s time for the next onslaught!

And, in between all these appointments, we want to live life… and not just inside the walls of hospitals and clinics!

We don’t need your sympathy.  But the next time you are feeling all-over exhaustion from a day at the doctors, an afternoon full of tests, or a bout with a cold or infection, think of us.  And give us empathy and understanding.  That’s all we truly crave.

Thank you.