Sneaky Little Bastard

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I don’t know a nice way to say this, probably because quite simply, there isn’t one but I find this disease to be a sneaky little bastard.

Why do I say this? So many reasons, but let me start by saying that its unpredictability is nothing short of maddening. The path it takes twists and turns like a dangerous mountain highway and sometimes it feels like the oncoming traffic is going to smack you squarely to your core.

First there is the path to diagnosis. Since sarcoidosis is a disease of exclusion and a mimicker you can be told you have anything from lupus to MS to cancer to name a few. You are poked and prodded and x-rayed and scanned. You are biopsied again and again. Finally after you’ve been terrified out of your mind with worry that you’ve got the big “C”, you are suddenly and abruptly told…nope…it’s sarcoidosis.

Then, you get told that having sarcoidosis is a good thing. Really and truly…that’s actually what they tell you! How about that. A good thing. A few months of treatment and you should be on your way back to a normal and healthy life. Hope soars that you will easily go into remission. You quickly figure out, however, that your symptoms are not in fact easily managed. The drugs they put you on have wicked and evil side effects. You either become a bloated monster, or in my case, a shrinking violet losing strength by the day.

The symptoms begin to mount. At first it was just a little shortness of breath. Now you cough all the time, wheeze, get wildly unpredictable fevers and, night sweats that make you want to call the fire department for relief as you feel the flames shooting out of your pores. A fatigue sets in that makes you feel like every single step is like trying to slog through a muddy field but the mud is waist high. Eventually, a range of other weird and difficult to describe aches and pains creep up on you like a child playing a prank you never saw coming and it doesn’t make you laugh. Headaches, joint pain, back pain, bone pain, numbness, cold extremities, muscle aches, weird burning sensations and on and on. Your doctors can’t explain these strange symptoms and sometimes they look at you like they don’t even believe you but, it’s real…it’s all real!

To top it all off, everyone tells you how great you look. They say well meaning things that actually cut to the core. Things like, “Gee, you don’t look sick”. Or my personal favorite, “Wow, but you look great. How sick can you be?” Their comments, meant to make you feel good, only leave you feeling more alien in your own skin.

You begin to withdraw, not because you want to but, because the disease is having its way with you. You simply no longer have the energy to participate the way you once did and you realize some people think you are faking it. This only adds to the demoralizing sense of frustration you already feel for having this stupid disease in the first place! A feeling of complete and utter loneliness begins to set in. You are entirely misunderstood by your doctors, your family, your friends, your co-workers, your neighbors, your pets….you name it…no one gets you anymore…some days you don’t get yourself. You wonder where you’ve gone and if you’ll ever be back.

Suddenly you have a good day! You slept well, no night sweats keeping you up, tossing and turning with covers on and covers off and, covers on again after the sweat finally dries and you are left freezing like someone left you out in the cold without your coat and hat. You have energy as a result of sleeping well so you decide to tackle a long overdue project around the house. You’re so happy to feel human again.

One of two things happens next; Either you get through it without incident and are as proud of yourself as you would be by your child brining home their first A grade from school. Or, half way through the project you realize that you bit off more than you can chew and yet another home improvement project only gets done half way. It starts to feel like your house might fall down around you. You never lived like this before this monster crept into your being, leaving “To-do lists” undone and your home in disarray.

If you managed to complete the project and are beaming with pride, you start to ever so subtly fool yourself into thinking you’ve got this nasty disease licked. You start planning for tomorrow’s chores, full of aspiration.  Sadly, when the next day comes, you wake up feeling like you were hit by an eighteen wheeler and realize how wrong you were. You tell yourself that you won’t ever let yourself get fooled again! Resolve in the knowledge that this disease is actually bigger than you are, you tell yourself that you’ve got a handle on it. You readjust your expectations.

A deep despair sets in as you start to notice that life is a house of cards, at any moment it could all come crashing in. You didn’t realize that readjusting your expectations really meant that you had to say goodbye to your old life. You find yourself engulfed in unrelenting grief. You know that you need to fight off the weight of this depressing new reality.

Out of the blue, another good day. This time it’s a trip to the doctor where you are told your CT scan or x-ray or whatever test it is they decide to give you that day looks good. You think, maybe I will beat this S.O.B! After all, you are doing all the right things. You have changed your eating habits, you are taking your medications as prescribed, you are trying to exercise as much as you can. You have learned to listen to your body. You begin to feel like you are the captain of your own ship once again. You’re in control! Remission looks to be around the corner. Brighter days are ahead for sure!

In the meantime, what you desperately fail to realize is that you have only grown accustom to your new normal. You are in fact, short of breath all the time but, you no longer notice it. You are fatigued all the time but, you have learned to slog your way through the heaviness of this strange new world. You don’t realize that most people don’t have pain screaming through their body day in and day out. You have unknowingly put on those waist high boots and are in fact pulling yourself through the mud and the muck every day. It has just become normal. You think you’re doing great and you’re so proud of yourself for overcoming the beast.

When you go to your next six month follow up, take your pulmonary function tests or whatever tests you are given that particular visit, you learn just the opposite. You learn that despite a clearer x-ray, your lung function continues to worsen. Your goals haven’t actually changed at all. You are still in the same place you were when this sneaky little bastard took hold. Now the most you can hope for is stability. Remission is no longer discussed. You can only hope to stay off oxygen as long as possible. The damage is done and it is significant. It cannot be undone. There is no healing in sight.

Eventually, you realize that life goes on, although forever altered. You know that you must continue to do what you can to live as well as you can. You must bury and say goodbye to the old you. Life will never be what it was and as you bury your old self and say goodbye, you realize one thing. You become sure that you will never let this sneaky little bastard get the better of you again. You know once and for all this is serious stuff and that you are now locked in a battle of wills against this lousy disease. You know that you have to accept the new you and you know you will never allow yourself to be fooled by this sneaky bastard of a disease ever again.

(Originally written January of 2014 – when I was only a few years into my diagnosis and still trying to figure out what life was going to be like with sarcoidosis. Now I know…now I know that it’s a battle and I intend to WIN!)

Awareness Now…Awareness Always

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During this month of “Sarcoidosis Awareness”, we are hearing a lot about the disease, what it is and how hard it is to live with. I think bringing awareness to these things and the fact that there is no known cause or cure is important but for those of us who live with this disease, bringing awareness to what it is and how it impacts our world is not something we do once a year for a month. It’s how we live our lives. We spend a lot of time explaining ourselves. Why we are so tried. Why we cough so much. Why we wear an oxygen mask. Why we missed work yesterday. Why we have trouble walking. Why we feel lousy but look good.

People frequently tell us, with confusion and sometimes with accusation, that we don’t look sick. For some reason, our physical appearance becomes a smoke screen for what is really going on, which is fascinating because it means people expect us to walk around looking ill, in dirty sweatpants and no make up, like we don’t actually have a right to look our best. It lulls those without the disease into a false sense of security that we are doing better than we actually are and if we are honest about it, truly, we often play along. It’s just easier to sweep reality under the rug sometimes. But, how we look is not necessarily a measure for how we feel which is why we then end up explaining ourselves and our disease, over and over again like a broken needle on an old fashion record player.

It’s easy to be dismissive of sarcoidosis. Not enough is known about it and there is no true pattern to how it will play out for any given patient. It’s rare and most people have never heard of it. And, it’s generally invisible. We don’t look sick…most of the time. In fact, most of us have learned to mask our pain so well, we can sometimes even fool ourselves into moments of normalcy. Sadly, there is nothing normal about sarcoidosis. There is nothing normal about the contrast in how we feel and how we look and there is nothing normal about having to make a daily assessment about our goals based on our pain and energy levels. There is nothing normal about the losses we have to accept.

We may look like our old selves, but we have changed. We are vulnerable because we have learned that life is fragile. We have come to understand that nothing is to be taken for granted. Our health could turn at any moment, forcing us to say goodbye to the life we are currently living. We understand grief in new and profound ways because may of us have lost careers, friends, homes and more. We’ve become watchers as those around us steam ahead, doing so with no recognition for our inability to keep up. In subtle ways, all around us, we know we’ve been left in the back of the pack. We might finish the race, but we aren’t going to win.

So, come April 30th, you might see less purple splashed on the internet, you might notice that your friends who have sarcoidosis, aren’t posting about it every day and you might see fewer “likes” for posts about the disease. For those of us who have sarcoidosis making people who don’t have it and never heard of it, more aware of it, is a life long event. It will remain something we strive to do until better quality treatment is offered, until the cause and cure are known….until we stop dying.

My Sarcoidosis Family

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Like a lot of people, when I was first diagnosed with sarcoidosis, I took to the internet. I needed to learn more about this strange disease. In my quest to find more information about it, I also found other people who have it through online support groups. In these groups, I came to understand the power of grace, the meaning of kindness and the joy of unconditional friendship.

When I was newly diagnosed, I was scared and confused and I had a lot of questions. People who were well experienced in living with this disease held my virtual hand as I began the relentless journey of life with a chronic illness. They patiently eased my anxiety about the unknown. They gently guided my attitude to a better place and they showed me overwhelming amounts of love and encouragement when I felt my lowest. Without them, I would have been utterly alone as I faced a life altering voyage into the world of the unwell.

As I’ve come to know my virtual sarcoidosis family, I’ve observed some pretty amazing things about them. They rarely complain and when they do, they always apologize for it. No matter what they feel or what they are going through, they will always make time for someone else in need. My virtual family is brave. They are fierce and they are proud. Having sarcoidosis does not stop them from striving to live their best lives.

My sarcoidosis family sets an example for me about the kind of person I want to be with this disease. I want to be strong. I want to stay positive. I want to keep my faith and I can do all of these things because my sarcoidosis family gives me the drive to remain focused on what is in my control, rather that what isn’t. I would not be doing as well as I am without the collective power of my virtual clan of sarcoidosis warriors!

We are a relatively small community. We have lost members and when we do, we grieve together. We cry for their families and share in their pain. Every time someone in our sarcoidosis family leaves us, we feel the hole they leave behind and their loss only makes us want to fight harder to find a cure.

Having sarcoidosis sucks. That’s just the way it is. It makes daily life difficult. It’s unpredictable. It hurts. It’s hard to breath and it is a challenge to think straight. When you live with chronic sarcoidosis, your world shrinks because you simply cannot keep up with the rest of it. It can be lonely and it is easy to feel abandoned by people you once thought were your friends. They don’t mean to leave you behind. They just don’t understand your experience and as a result, they drift away. For all these reasons, it is important to connect with those who do understand, who have walked in your shoes.

During Sarcoidosis Awareness Month, I want to take a moment to say thank you to this beautiful tribe of people who keep me from feeling abandoned and who inspire me to keep fighting. I’ve been formally diagnosed with this disease now for five years. My goal is to pay to forward. My hope is that I can be the comfort someone new to this disease needs, that I can bring them safely into the fold of the loving arms of this wonderful virtual family.

 

The Only Way To Win Is To Show Up!

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When you are part of the world of chronic illness, you often hear that you are a “warrior.” You hear that you must be strong to live like you do, that you have a lot of fight in you. How else could you live with a beast inside your body, day in and day out and not go to war with it? The alternative to warring with the beast inside you is to give up, give in, let go and die.

Perhaps it seems a bit dramatic to bring up death but there is more than one way to die. When you live in a constant state of uncertain health and your body is riddled with unstoppable pain, weird unexplainable aches, massive weariness and frequent episodes of mental obscurity, you can become discouraged enough to isolate yourself from the rest of the world and this is a certain kind of ghostly death. Giving up on your life while still existing is in fact, fatal. Having all of the quality of your life stripped from your world is dispiriting and is the sort of living death that comes with a chronic condition if you don’t consciously choose to fight for more than subsistence.

Chronic illness will kill your spirit by stealing your health first, then your happiness, then your feeling of security, then your income and career, your home and finally your relationships. It will take and take and take from you until nothing is left. Until you no longer feel valued or that you bring value to the world. Chronic illness will seek to shrink your world and your worth until it is so small you have nothing left and no reserves to continue fighting.

Even though there is no disputing life with a chronic health condition can be daunting, there is an alternative to living death. You do not have to live like a whisper in your own story but you need to keep some weapons at the ready. One of them is to put on your battle armor every day. This means getting up and getting dressed. Getting up and getting dressed might seem like a no brainer to those who are not chronically ill but, that just means you don’t have to sit down and catch your breath after you shower. For many of us with a chronic condition, the thought of getting up and looking our best is a huge challenge but if you don’t do it, your disease wins. That isn’t to say that a day on the couch now and then isn’t necessary, of course it is. Rest is important when you are fighting a chronic condition but it’s not an excuse for giving up.

Getting up and dressing up are only two weapons in your arsenal. When you are chronically ill, attitude is absolutely everything. You can see the world as a devastating place, as if everyone has given up on you and you on them or, you can decide to make the best of a difficult situation and even if your world has shrunk, even if people have stepped away from you because you can’t keep up with them anymore, you can still give whatever is left of your world, the best you have to give. You can still make a conscious choice to take pride in your life, even if your life isn’t what it once was and you will feel better about yourself for the effort.

There is no doubt that living with a chronic illness changes you. Accepting that life is different, grieving the loss and change but then showing up, battle ready, for what’s next is the only way to find any harmony, it is the only way of sustaining any peace. It is what must be done if you want to be defined by more than your disease. Careful consideration of your outlook, daily inventory of your attitude and where you are in your ability to accept your current circumstances are basic requirements for combat. These are the things that make you a “warrior.” These are the things that give you the will to fight so that you can do more than exist, you can do more than survive. Having a life with chronic illness does not mean you cannot thrive. You can…if you show up and fight!

Five Tips For The Newly Diagnosed

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Don’t panic. Sarcoidosis is a very individualized disease. While there are some similarities in what we experience, each of us walks a very personal path and many people with this disease continue to live very normal, happy lives. Stay positive.

Connect with others who have the disease. Learning that you have a potentially chronic disease can be overwhelming and, learning you have a disease like sarcoidosis that so few have heard of and is unpredictable can be frustrating and scary. Getting to know other people who have already walked on their path for awhile can bring you great comfort. It’s important to know that you are not alone.

Get educated about the disease. Since sarcoidosis remains a mystery to the medical community and since it is pretty rare, there are actually a lot of doctors who don’t know that much about it. Being educated about the disease will help you find one you trust and it will help you be your own best advocate and there will be times you will have to advocate for yourself!

Don’t believe everything you read and hear about sarcoidosis. First, don’t assume all the terrible things you might read or hear about someone else’s experience will happen to you. You will have your own journey with this disease. Many people do go into some kind of remission/inactive phase of the disease. Whatever happens in your case, you will find a way to cope. Secondly, don’t believe anything you read about miracle cures or treatments that sound too good to be true. There is no known cause or cure for sarcoidosis. Sadly, there are some scams out there who will gladly make a buck off your pain and fear. If it sounds too good to be true, it is too good to be true!

This is a marathon and not a sprit. It can take awhile to get a proper diagnoses because sarcoidosis mimics many other diseases. The only true way to know for sure if you have it is through a biopsy. Once you are diagnosed, even if it is not impacting your heart or eyes, get both checked and then have regular annual eye exams with an ophthalmologist familiar with the disease.

A Mean Misunderstood Mystery Of A Malady!

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What exactly is sarcoidosis?

Medically speaking, sarcoidosis is a systematic inflammatory disease for which there is no known cause and no known cure.

Here’s what sarcoidosis really is…

Sarcoidosis is the immune system throwing a temper tantrum. It’s rude, kicking and screaming through your body with unbelievably annoying force. It wants its way even if what it wants isn’t good for it or the rest of you. It is the immune system having a massive outburst. It stubbornly acts in defiance of good behavior.

Sarcoidosis is a mystery wrapped in a puzzle. It is a medical conundrum that doesn’t seem all that interesting to the research community to solve because even though sarcoidosis is rare, it is not a gem. Solving the sarcoidosis riddle won’t bring in the big bucks so, the joke remains on those of us who have the disease and, the punchline isn’t exactly hilarious when being the butt of a joke involves the quality of your life.

Sarcoidosis is an immune system “on steroids”. The funny thing here is that while people use the expression, “on steroids”, to communicate that something is amped up, that it is bigger, faster and stronger than the norm, sarcoidosis is a disease that is both this and sometimes literally on steroids. The irony in that is pretty rich and that is how you tell a real sarcoidosis joke!

Sarcoidosis is the schoolyard bully of inflammatory disease. The immune system is set off for no good reason and picks on whatever organ it wants. It enjoys a good brawl. It is mean. It badgers and weakens the body without regard for the consequences. It is intimidating, as it laughingly pummels the dignity right out of you, stealing your health and sense of well-being.

Sarcoidosis is the immune system exploding like a terrorist bomb inside your body. It is sneaky. It comes out of nowhere. The intelligence on it is often missed or understood too late to stop the attack. It is incredibly scary and it leaves you on edge wondering when and where the next attack will occur. Your feeling of safety and security gone forever.

Sarcoidosis is a copycat. It mimics other disease behaviors, like lupus, cancer and MS to name a few. It confounds the medical community with its wanna be lab results and imaging. Because sarcoidosis is such a good impersonator, it can only be properly diagnosed by exclusion and a biopsy. It is a master of disguise, a very skilled impressionist. Its trickery and illusion, a constant head scratching confusing manifestation of peculiar symptoms. It is a mean misunderstood mystery of a malady.

The Need For Awareness Is Not An April Fool’s Joke!

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The beginning of April marks a lot of things. It is a time of transition as winter melts away. It is a time of refreshing rain showers. It is a time of renewal as flowers begin to bloom. It is a time of good fun as the month begins with a day of practical jokes and foolery. April is also the month of awareness for many worthy issues. It is autism awareness month. It is sexual assault awareness month. It is alcohol awareness month. It is stress awareness month and it is sarcoidosis awareness month.

April is a busy month.

I will be spending the month raising awareness for sarcoidosis because I have this disease and it sucks. Sarcoidosis is a rarely heard of disease, for which there is no known cause and no known cure. Minimal research dollars are spent in the search for the cause let alone the cure and, most people have never heard of it. What’s worse and truly demoralizing when you have this disease, is that many members of the medical profession don’t even have a good understanding what it is. When you do an internet search for sarcoidosis, it reads like a lottery winning disease, like it is no big deal, that if you had to have a chronic illness, having sarcoidosis is walk in the park.

It’s not. For many of us, sarcoidosis is more like walking through a thick forest of low hanging, half dead trees that are all about to come crashing down. Having sarcoidosis is life in a dubious state of confusion and misinformation. Having sarcoidosis is living in a constant state of being judged because of the unrelenting level of mystery and ignorance that surround this disease. The general public is ignorant about it but that is to be expected.  Surprisingly and perhaps more importantly, those in the healthcare community who have a misguided approach to managing the myriad of unpredictable symptoms that each patient might experience are often woefully out of their depth in providing aid and comfort those of us most in need and, sadly, many of them are arrogant in the face of their deficiency.

There are some reasons why sarcoidosis is misunderstood and one of them is that it is a disease that is incredibly individualized for each person who has it. There are many who have it that never even know they have it. They are asymptomatic and the disease never causes them a problem. They might find it incidentally while being examined for something else. These patients never need treatment for the disease and they never have a single medical problem despite their diagnosis. Next, there are the people who have an acute version of the disease. They might sustain some mild to moderate symptoms of the disease, a dry cough, unexplained fevers, some shortness of breath, fatigue, skin rashes or blurred vision, these being the most common symptoms. Patients who fall into the acute category, receive treatment to relieve the symptoms and never have another problem again.

Then there are the relapsers. These are the folks who receive treatment, do better, come off treatment, do fine for awhile and then flare again, maybe once or maybe over and over again. These folks may or may not sustain organ damage from the disease and life as a relapser can be incredibly frustrating because flares can be wildly unpredictable, extremely inconvenient and often painful. While the word remission is often used for relapsers, remission is a bit of a misnomer because sarcoidosis is often accompanied by other chronic problems like nerve damage, weakened tendons, sore muscles, unrelenting fatigue and joint pain, sometimes associated with sarcoidosis induced arthritis. So, while a patient can technically be in remission, or what is sometimes called an inactive phase of the sarcoidosis, the patient still suffers. It’s a chronic situation, despite the hope of word like remission.

Finally, there are the chronics. These are the patients who have sustained very serious medical problems from sarcoidosis and treatment is a constant. These are the people who absolutely have permanent organ damage. These are the people who cannot escape the challenges, pitfalls and frustrations of life with a debilitating disease. Sometimes these are the patients on organ transplant lists and sometimes these are the patients who die from this disease. Yes, people die from this disease. I have lost friends to this disease.

Another reason sarcoidosis is wildly misunderstood is that even within the medical community there are those who refer to it as an auto immune disease. It’s not. It is an inflammatory disease that involves an overactive immune response for reasons that are entirely unknown. When the immune system sets about to protect us, it causes inflammation as a way of healing but too much inflammation is bad for our bodies. What happens in sarcoidosis is that a person has an immune response to a real or imagined threat and the immune system flies into action to defend us from illness or injury. Once the threat, whatever it might have been, dissipates, the immune system does not stand down. It remains on high alert. As it does this, the sustained inflammation causes granulomas, a fancy word for clumps of cells. These granulomas on their own are not dangerous but when they begin to interfere with proper organ function, they cause damage to that organ. For some of us no damage is ever done, for others so much damage is done organs begin to fail.

Sarcoidosis is different than traditional auto immune diseases because the body is not attacking itself, instead the body thinks it is protecting itself when in fact, there is no reason for the immune system to be causing sustained inflammation. It is this inflammation that becomes potentially problematic with sarcoidosis. The reason the “off switch” for the immune systems breaks in sarcoidosis is not known. Nor is it known what actually causes the body to have such massive immune reaction in the first place. Believe it or not, there are many doctors who do not entirely understand this about the disease and this is maddening for many of us who have it. It’s important to be an educated patient but when you actually know more than your doctor, things get…complicated.

Just when you think you’ve got sarcoidosis figured out, don’t be fooled. While there are some commonly known symptoms of this disease, as described above, there are as many variations of these symptoms as there are people who have the disease. The trajectory of this disease is insanely different for every person who has it and how it will impact their life. While 90 plus percent of the people who have it, have lung involvement, it can impact any organ. For those with a more chronic version of the disease, more than one organ is usually involved.

There are no treatments for sarcoidosis designed to cure it. Treatment for sarcoidosis is for symptom management only and, the go to drug for sarcoidosis tends to be a high dose of prednisone, sometimes for long periods of time. This drug, while life saving in many situations, can also present new and unintended health issues such as excessive weight gain, high blood pressure, depression and other mood changes, sleep problems, stomach pain and bloating and other more serious medical problems like high blood sugar readings. There are other treatments, things like low doses of chemo therapy to help suppress the immune system. Immune suppressing treatments have their own side effects such as increased fatigue, potential liver damage, joint pain, nausea, mouth sores and more. The bottomline is, treatment for sarcoidosis is truly sometimes worse than the disease. Yet, sometimes it is a very necessary evil.

Finally, sarcoidosis is not a disease you can see…most of the time. The fact that sarcoidosis is an invisible disease and the fact that many of us who have it, who truly suffer with it, look good, just plain bewilders people who have never really ever been sick. The fact that we don’t look sick is even confusing for physicians who treat us. I’ve had more than one doctor comment on my appearance, completely dismissing my pain. Since we don’t look sick, how bad can it be? The invisible nature of this disease is yet another example of what makes it a confusing and misunderstood mystery.

Sarcoidosis awareness month may be starting on April Fool’s Day, but sarcoidosis is not a joke. It’s a very complex disease but it is also a rare disease and because it is a rare disease, it does not get the funding it needs to find its cause or a cure. This is why sarcoidosis awareness month is so very important. If we can raise awareness about the seriousness of this disease, about the devastation this disease can and does cause, if we can get those in the medical community who don’t take it seriously to have a better understanding of the consequences many of us suffer from living with it, maybe…just maybe…we can begin to get a step closer to the answers we deserve. We deserve to know how we got this disease and how to get rid of it…once and for all!

Life, Love And The Pursuit Of Air

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The fuel of life…

Breath producing vigor…

Our nourishment for being…

Sustenance and provision for growth…

An invisible gaseous gift…

A mixture of oxygen and nitrogen…

Air filled lungs…

Inhaling and expanding…

Exhaling and contracting…

A privilege…

Not a right…

Beautiful cherished respiration…

The Tranquility Credo

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Resist what is wrong even when what is wrong is the easier thing.

Rise up for what is right even when it is the harder thing. 

Seek truth in the face of absurdity.

Seek to be kind even to those who are not. 

Be curious.

Be brave. 

Find peace because another’s chaos does not belong to you. 

Find courteous goodwill in the face of disagreement. 

Resist the need to be right rather than happy. 

Rise up in principled purpose for those most in need. 

Strive to be honorable in your actions and accurate with your words.