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!)

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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!

Yes I Can!

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Yes I can…Oh yes, yes, yes I can!

These are words that I tell myself daily. This is my private little mantra. I say it when I wake up. I say it when I get out of bed. I say it before I shower and get ready for the day. I say it before I exercise. I say it before I do chores. I say it when it’s time to walk the dogs. I say it when I have to go to functions or parties. I say it before I travel. I say it when I go to the doctor. I say it when I have to take medication I’d rather not take but need. I say it when I go to bed and try to sleep.

Sarcoidosis makes it hard for me to breath, it makes my bones ache, my joints stiff, my nerves burn. It makes my chest hurt and it turns my skin funny colors. Sarcoidosis makes me tired all the time because my immune system sucks all my energy fighting phantom foes.

Life is an effort but it’s an effort that I am not ready to give up on and, I know that each day requires me to make a choice. I can give up or I can tell myself that I can do it. One day at a time is all I have to get though and when that’s too hard, I only have to focus on the hour ahead of me.

I have become my own best cheerleader. I smile when I don’t want to but, this changes my attitude and eventually, I find a little joy each day. Some days, I find a lot of it. Many days, actually. I will not let this disease beat me. I will not lose because there is too much to lose. Loss is not an option.

There are times I have to tell myself that I can tolerate anything for just a day that would horrify me for a lifetime and, I break down my struggles into manageable chunks of time. I don’t have to tackle every problem this disease throws me at once. I am learning to prioritize.

Once upon a time, I could take a big bite out of life and I could multi-task my problems and setbacks didn’t phase me. Since my sarcoidosis diagnosis, I am not able to do this anymore. Now, I try to face what I can when I have the energy and I have to break down tasks into parts and pieces and accept that things may not fall into place as quickly or as easily as I’d like them to.

It has really been about learning to adjust my expectations and if truth be told, I am still very much a work in progress in this regard. I don’t ask for help well. I still want to do it all myself. Asking for help feels like giving up but asking for help can actually be a sign of strength, a concept I understand in theory but am not yet fully comfortable with.

Each day is an adventure in picking my battles. Each day is an opportunity to face life with a can do attitude. Each day is a gift beyond measure. Each day that I tell myself that I can…I know that I will!

Sarcoidosis Soldier

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My husband thought I should write about why I named my blog “Sarcoidosissoldier”. He thought it was both an interesting name because I do rise and fight every day but also a misleading name. When I asked him why he thought it was misleading he said, “because you don’t take orders from your disease.”

I’ve been thinking a lot about that. And, while I understand my husband’s point, which is that I try not to let my disease rule my life, there are in fact hours and sometimes days in which I do take orders from my sarcoidosis. Sometimes my body demands rest because of fatigue or pain or both and I can’t do a thing about it.

Other times my husband is exactly right. I stare down my disease without blinking and I win. I overcome whatever it is that tries to bring me down – pain, shortness of breath, fatigue, weakness. And, I use every weapon in my arsenal including inhalers, pain medication and naps to name a few.

So, I think I named my blog “Sarcoidosissoldier” because every day is a new battle. Sometimes it is just a skirmish that is easily overcome using the right fire power and just a little bit of patience.

Other times it is a sneak attack as I’ll wake up feeling fine but as morning turns to noon, I begin to fade. These are the battles that are hard to win, the ones I don’t see coming but if I can get myself to a better strategic position then there is always hope.

Then there are the all out battles royal. These are days of undeniable yet hard to describe aches, pains, fatigue and discomfort. This is when every weapon I have including sometimes calling the doctor are in order. I must rise and try to fight no matter how I feel. I will not surrender. I won’t wave the white flag. I push and push and push my way through the slog, the muck and the mire of this disease on these days.

Eventually, I do get to the other side and when I do and after the fight is over, I breath, quite literally, just a little easier. I have survived again. I continue to press on!

When you live with a chronic and unpredictable health condition, you do become a soldier, fighting for your life, trying to maintain some kind of normalcy. It is a constant struggle just to stay ahead of your disease and its a crusade to wear you down.

The fighting and battles are well worth the effort because life is too precious to give in and I am not willing to let go of whatever normal I am still able to maintain.

So, yes I am a soldier. It serves me well to be a warrior.

I am a solider and my enemy is my 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 it’s 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!)