A Sarcoidosis Prayer

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Bring safety to the vulnerable

Bring courage to the fearful

Bring strength to the weak

Bring serenity to the troubled

Bring clarity to the confused

Bring peace to the anxious 

Bring joy to the unfortunate 

Bring energy to the fatigued 

Bring comfort to the pained 

Bring education to the healers 

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Rage, Rise and Defeat Sarcoidosis!

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Rage against the angst…

Rise beyond the pain…

Climb out of darkness…

Look for the light…

Fight for your life…

Seek to find hope…

Soar above the torment…

Storm through the misery…

Defeat unwelcome despair…

Denounce this disease…

 

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!)

When…

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When you are confused…Learn 

When you grieve…Weep

When you are divided…Unite 

When you are lost…Seek

When you are stuck…Change

When you are alone…Join 

When you cry…Laugh 

When you are ill…Heal

When you are scared…Hope

When you are uncertain…Pray

When you argue…Listen

When you are peaceful…Trust 

When you are grateful…Share 

When you despair…Hope

Raising My Game

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This weekend when my husband and I were playing tennis, he was really working my backhand…ball after ball after ball. I found myself focused, able to stay with each ball as it flew toward me and each time I responded with some pretty good shots right back at him. I realized after we were done playing, that a year ago my backhand, while not exactly a thing of beauty now, was pitiful. It was the worst part of my game…weak. Now, when a backhand shot comes my way, I am able to hit it with a fair degree of confidence, even if not as hard or as accurately as I’d like. This got me thinking about how playing tennis with someone who is and always will be a better player than I am has raised my game.

Tennis is often a metaphor for life for me, like baseball is for those who love that game. When I realized that playing tennis with someone better than me, has made me better too, I also realized that surrounding myself with people who cope better than I do, laugh more than I do and are filled with a sense of gratitude for life also makes me a better person. I am lifted in their presence. I find that I am a more appreciative person around people who understand the importance of true joy. Being around people who are apt to find light in darkness and hope in dire times raises my spirit and makes me want to strive to do the same.

I find that even with my sarcoidosis, I look to surround myself with people I admire. People who have this disease but seek to continue the fight to live a good life. I prefer the company of those who do not allow this disease to define them. I am better able to cope with my own sarcoidosis when I am surround myself with those who do it with grace, humor and a very purposeful sense of gratitude. Being around people who strive to cope with their own disease in positive ways, makes me acutely aware of how I am choosing to cope as well and that I can always do and be better.

But For The Grace…

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The past week has been difficult in the sarcoidosis community. First there was a suicide and then there was a death from complications from this disease and finally children of a person with this disease found their mother on the floor of her home in need of immediate care. These are only the incidents I know about. I am sure there are many more quietly suffering. When things like this happen, I am reminded that I am sick, that I have a very serious disease. Most of the time, I try not to dwell about it. I try to act as if everything is normal and I am okay. But, I am not okay. No one with this disease is truly okay. We are all on the verge of the unknown.

Staying positive and striving to live the best that I can is the only way I know how to survive the “sarcoidosis life.” Once and awhile though, reality finds a way of seeping into my otherwise protected world of self preservation. I don’t live in denial that I have this disease. Far from it. After all I write about it, frequently sharing my trials, challenges and frustrations with anyone who is kind enough to take the time to read about them. I try to live in harmony with my disease. I strive to balance the uncertainty of it all with gratitude for the life that I do have. I work daily on finding hope and I make a choice to be at peace as much as possible. I have found the only real way to have a life and have this disease is to live with a thankful heart. Things could always get worse tomorrow but today is all I have.

When disaster, death and sorrow rip through my sarcoidosis community, I am made painfully aware of the saying…”But for the grace of God go I.” At any moment, I could be the one being written about because I’m no longer here to be the writer. This reality, this knowledge, this awareness is humbling and deflating. It takes my breath away and strips me of that small bit of comfort I know is perilously built on the hope that there is more to life than my disease. This cannot possibly be what I have become!

When the reality of what this disease is capable of smacks me in the face, my shields come down and I am laid bare, made vulnerable by the depth of destruction this disease is capable of inflicting. It is probably important to be immersed in this reality from time to time, to be reminded that none of us knows what is in store. This truth, while incredibly painful to acknowledge, gives me a resolve to press on, to continue fighting for my life and look for the joy in small everyday things, to remain vigilant that I am fragile and to know that grace is with me when I remember to look for it.

A New And Very Different Life

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When you live in a body that is broken by chronic disease, there are obviously physical challenges but the hardest part of me, living in a body that won’t cooperate, is not the physical discomfort, it’s the emotional strain of knowing I am not the same as I was before sarcoidosis decided to invade my body.

I don’t waste my time asking “why me?”. I’ve lived life long enough to know that “stuff” just happens to all of us at different times and in different ways. Part of living is learning how to cope, so “why me” becomes a wasted question. It’s not worth the time to lament over. That being said, I do grieve who I used to be. I grieve the ease by which I once ran around on the tennis court. I grieve a lost career because I no longer have the stamina or brain power for that kind of success. I grieve a body that does not hurt all the time. I grieve lost friends who have faded away because they didn’t want to get to know the new broken me and I can’t keep up with them.

Life is no longer what it used to be and while living with a chronic health condition, impacts the body, it also taps into the soul and tears at the psyche. Managing the physical strain of sarcoidosis has become the easy part. I try to get enough rest, avoid stress, see my doctors, take my medications, eat a strict healthy diet and get my exercise. It is the emotional stress of this disease that is trickier, harder to pin down and often more elusive. As I have learned what to do to stay physically healthy, I have also learned what to do to stay emotionally healthy and the two actually go hand in hand. If I am not taking care of my body, my mind gets weak. If I am not taking care of my mind, my body gets weak. Taking care of my mental state involves a conscious daily effort to focus on what is good instead of what is bad, on what I have instead of what I have lost.

Emotional management of my disease, requires that I am honest about how I feel even if that honesty is hard to accept. I have to allow for balance between grief and loss and moving on. I’ve had to make room for a new and very different life than I ever expected. I have had to learn to be more comfortable being vulnerable and I have had to learn to accept help from other people. I have had to learn that pride is no always my friend. Sometimes people fail me and I’ve had to learn to understand that it’s because they just cannot understand my experience. I didn’t before I got sick. So, I also practice a lot of forgiveness to keep my emotional state as healthy as I can.

While caring for myself physically with this disease is pretty straight forward, caring for myself emotionally isn’t linear. While it’s okay to feel upset about having this disease, it is not okay to stay stuck in anger. While it is okay to be sad about having this disease, it is not okay to wallow in sorrow. While it is okay to grieve the losses, it is not okay to live in the past. Finding emotional health when you live with a disease like sarcoidosis, is all about finding equilibrium and learning that there are limits in hanging on to emotional pain and that there is freedom in letting it go.

Today, I spend a lot of time focused on grace, gratitude and my overall attitude toward whatever faces me. I can walk in faith, believing I am up for the challenge or, I can shrivel and wither in its wake full of bitterness and anger over the contest ahead of me. I know this is a battle I cannot fight alone or in the dark. So, today I have learned to ask for help when I need it and to say no when I cannot do something. I am learning to slow down and stop if I have to without guilt because I did not ask for this disease and I cannot always control it. My emotional health depends on my ability to accept that my life has changed and to do so without shame for my limits.

There are things in the life worth fighting for and sarcoidosis has taught me that finding happiness and serenity are among them. No matter what befalls me, no matter the size of the mountain the rises ahead of me, I can take the journey one step at a time, afraid but still functioning, in sorrow but with hope that each step will lead to a better place of peace and light. I know with my whole heart and my entire being that my life is made or broken by the choices that I make and while having sarcoidosis is difficult, even life altering, how I respond to the challenges it presents will make all the difference in the new life that am asked to create because of it.