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…

 

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The Sarcoidosis Promise

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I promise to rise each day and fight for a life…my life! 

I promise to take care of my mind, my body…my soul.  

I promise to eat a healthy diet.

I promise to get regular exercise. 

I promise to rest when I need it. 

I promise to push when I can.

I promise to be grateful. 

I promise not to cry too much.

I promise to be there for others in need who suffer as I do.

I promise to be voice for the voiceless. 

I promise not to be defined by my disease. 

I promise to seek joy.

I promise to march through pain.

I promise to believe in the power of hope.

I promise not to judge what I don’t know. 

I promise to look my best.

I promise to raise awareness about sarcoidosis.

I promise to advocate for myself when doctors try to belittle us. 

I promise to continue to seek adventure.

I promise to appreciate my loved ones…to thank them every day. 

I promise to remove negativity and unnecessary stress from my life.

I promise to cling to faith that something better waits for us. 

I promise to make love a priority in all my actions. 

I promise to be an agent of peace.

I promise not the hang on to anger. 

I promise to let go of what is out of my control. 

I promise to remember that life is short…too precious to be squandered. 

I promise to hug my dog every day. 

I promise not to give up. 

 

Hope Is The Answer

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Hope is defined as “a feeling of expectation or desire for a certain thing to happen.” Hope is a wish. It is a want but, hope is more than this. Hope is also an ambition. It is a a goal. Hope drives us to plan for more and to set our sights on a better outcome.

When you live with a disease like sarcoidosis, you have to cling to hope in order to survive. Hope is the most important ingredient in the fight against any disease. Hope is the fuel that keeps us going during the most difficult days. We have to believe, to know in our hearts, that things can and will improve for us.

Hope is a form of trust, a type of faith. Having hope means that we must believe that light will return to our lives even during our darkest moments. Hope is the unashamed abandonment of common sense. It is a belief that what is yet to be revealed will be make us more whole, restore our peace and bring us serenity.

There is no point to life without hope because hope is what gives us the determination to make better decisions for our lives. We may suffer with a chronic disease, and it is difficult, but we can control how we decide to look at our lives. Will we remain grateful or will we dwell in misery? Hope helps us pick the positive option because, things may not be the way we want them to be, but we can make a conscious decision to believe they will get better.

Hope is a choice.

It is something we can decide to have or not to have. Hope waits for us to choose it. We can be hopeful one day at a time. Hope evolves with us as we grow and change and shift in our own thinking. We must accept what cannot be changed but, we can also have courage to be hopeful even when it feels out of our reach. Hope is never out of our reach.

Living with a disease like sarcoidosis requires a lot of us. We suffer humbling loss in the wake of this disease. Our lives change and change forever. Our bodies are weak. Our minds are muddled. We don’t recognize who we’ve become. We grieve who we used to be and somehow must learn to accept who we are now, strangers in our own skin. How do you do that with grace? How do you let go of the life you once knew so well and learn to embrace the unknown that is now?

The answer is hope.

Hope is the only thing in life that is stronger than fear. Hope is brave. Hope is the only thing that makes miracles happen. Hope gives us the energy we need to keep trying. Hope is the belief that what is to come is better than what we left behind. Hope overcomes confusion. Hope makes all things possible. Hope never surrenders. Hope is limitless. Hope is a renewable resource. Hope feeds courage and courage builds our strength. Hope keeps us alive.

Overcoming Fear…A New World View!

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Fear isn’t exactly specific to sarcoidosis but, for me, fear is a relatively new experience. I was not a particularly fearful person before my sarcoidosis diagnosis. In fact, fear is something that has actually snuck up on me over the years that I have been chronically ill. It has taken up a quiet residence in the recesses of my mind but it is constant now and I don’t like it.

Recently, I was given a golden opportunity to travel somewhere exotic that any person in their right mind would want to go. When the chance to have this great adventure was first presented to me, my heart raced and my mind exploded with excuses why I should not go. This was rather alarming to me. I was surprised by it. I hadn’t expected to feel this way and it confused me because, even though part of me knows I live with a new steady feeling of uncertainty in my life, I hadn’t realized that this fear had become so profoundly ingrained. I know this kind of alarm is not good for me and it is not something I can give in to.

After my panic subsided, I took a deep breath and decided that I needed to take a step back from this very odd reaction and examine it further, to better understand why I felt such trepidation at the prospect of being able to spend time in paradise. My head knew what my body didn’t. This was not a normal response. So, I did what I have learned to do since my sarcoidosis diagnosis, I took a self inventory of my feelings.

Self inventory is something I do a lot now that I am chronically ill. I know that I no longer see the world the way the world really is. I see it through the eyes of a person in a broken body but, I also remember who I was before I became broken and the only way I know to keep any part of that person alive, is to fight for her, to constantly examine my motivations and judgements about the world now that my life has been taken over by sarcoidosis. Am I seeing whatever I am looking at through my broken point of view and can I get past that point of view to improve the quality of my life? These are the key questions I have to ask myself whenever something new is presented to me.

Upon further examination of my overwhelming dread at the thought this adventure presented to me, I realized something. I realized that the fear was coming from the fact that my world now is small, very small. The thought of leaving the cocoon that I have created for myself is scary. I live in a cocoon now for a reason. It is safe here. I have routines that help me manage the symptoms of my disease in this cloistered place of comfort and familiarity. In this sheltered place, I sometimes forget that there is a big world out there and, apparently I’ve become a little afraid of it. In this sheltered place I can sometimes fool myself into believing I am physically and emotionally stronger than I really am.

After I better understood my fear, I realized another thing. I can’t let it rule my life and the moment I figured that out, I also realized that I have to take this adventure even if it scares me. While living on my cocoon is okay sometimes, it is not okay to be suffocated by it. The world is a big beautiful place and even if I am sometimes frightened by it, I need to remember that it is still better to remain part of it whenever I can than to shrink and wither in worry and angst in a completely collapsed place of illness and disease.

I will accept that taking this adventure is scary for me, that it will be an effort for me to stretch myself outside of my zone of comfort and routine. I will also and perhaps more importantly, acknowledge that it is good to be physically well enough to accept this challenge. There was a time I wasn’t and there may be times in the future when I’m not. I will embrace this adventure as a chance and a lesson to grow beyond my disease and to live my life, truly and completely. I will be grateful for the insight this trip as given me about how fear seems to be impacting my world view and I will continue to strive to overcome it wherever and however I can. Fear will not rule me.

The Beast…The Ogre…The Monster!

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When it comes on, it takes over your body like a demon possessed. There is no stopping it or sleeping it away. It enters your body, your bones, your muscles at will. It leaves only when it has had its fill.

Like a zombie, you move through the day stumbling, staggering and teetering. You lurch, you wobble, you reel. You lack your once finely tuned agility. Nimble dexterity, a thing of the past.

Fatigue invades your soul and assaults your very being. It takes your dignity, your pride and your passion. The world is dull and dark, as the weight of your own body crushes your spirit and your hope.

Your mind is muddy, dank, depressed and thick. Thoughts come at a snail’s pace and are vague, indistinct and confused. Your brain is full of cobwebs and dust. Your flesh feels like fuzzy unbrushed morning teeth, after a night sleeping with your mouth open.

It is the most unpleasant of out of body experiences as you feel the core of who you are slipping into the most cavernous abyss and a heaviness too big to fight covers you in a doomed sort of melancholy.

Fatigue ravenously snacks on your vitality and the more energy it takes, the stronger it seems to get, growing like that creature from the movie The Blob. It expands and widens as it barrels through your body, unstoppable in its determination to destroy your life and dreams.

It replaces your motivation with profound apathy and emptiness. When it is finished with you, it leaves you resembling a wet noodle, soft and flaccid after being soaked in water too long. After shaking you within an inch of your life, it throws you on the ground, damp and gnarled. You feel shredded and somehow forever shattered in its wake.

It is cruel. It is indifferent. It is savage. It is viciously diabolical in its desire to upend your life. It is ruthless. It is spiteful. It is fiendish. It is singleminded in its mission to demolish your once vibrant world and obliterate your enthusiasm for adventure.

Fatigue is a beast.

Fatigue is an ogre

Fatigue is a monster.

Nothing Like A Good List To Demonstrate The Point!

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Yesterday, I posted a list of all of the known possible symptoms/complications of sarcoidosis for “Awareness Month.” The length of the list and some of the things on it were even a surprise to some people who have the disease. Since yesterday’s list was a hit, I thought for today’s post I’d simply list all of the known side effects of the treatment available for sarcoidosis.

Within our little community we have often talked about how the treatment for this disease is sometimes worse than the disease itself. There are no curative treatments offered for sarcoidosis. Treatment is for symptom management only and to reduce the potential for organ damage in whatever organ or organs the disease can be found. Remember, sarcoidosis can strike anywhere in the body!

Treatments for sarcoidosis are mostly limited to high doses of corticosteroids, immunosuppressants and low dose chemo therapy…all for extended periods of time. So, deciding if or when to receive treatment is a very personal choice and depends largely on how badly symptoms are impacting one’s quality of life and if organs are being damaged by the presence of granulomas. (In case you forgot, granulomas are those pesky clumps of cells that form in our bodies because our immune system has gone off the rails!)

With all of this in mind and in no particular order, here is a list of possible side effects from the treatments available to those of us with sarcoidosis. Just like yesterday, I am sure once I publish this list, my readers with the disease will inform me of even more side effects/complications from treatment.

There is nothing easy about sarcoidosis!

  • Weight gain
  • Mood changes
  • Moon face
  • Dizziness/Fainting*
  • Headache
  • General irritability
  • Noisy rattling breathing
  • Pounding in the ears
  • Red burning feeling to the face
  • Swelling to hands and feet
  • Brain fog – trouble thinking and speaking*
  • Blurred vision
  • Fast beating/Irregular heartbeat*
  • Chest pain
  • Black tarry stool
  • Hair loss
  • Nausea*
  • Mouth sores
  • Stomach pain*
  • Metal taste in mouth*
  • Dry mouth*
  • Increased fatigue*
  • Joint pain
  • Drowsiness
  • Bone pain
  • Feelings of anxiety/nervousness*
  • Shakiness*
  • Nerve damage*
  • Fever/Chills
  • Cough
  • Hoarseness
  • Shortness of breath
  • Lung damage/Fibrosis
  • Lower back pain
  • Increased risk for colds/flu/pneumonia*
  • Jaundice
  • Liver damage
  • Usual bleeding
  • Low white blood cell counts
  • Bruising easily*
  • Loss of appetite
  • Muscle pain
  • Acne
  • Constipation
  • General weakness*
  • Numbness and tingling to feet
  • Diarrhea
  • Edema
  • Changes in urination
  • Hives and itching
  • Skin changes/growths
  • Pale skin
  • Increase risk of cancer
  • stuffy nose/Sinus pain
  • Sore throat
  • Increased risk for developing diabetes

(*My side effects)