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. 

 

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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.

S.A.R.C.O.I.D.O.S.I.S

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S is for stupid

A is for absurd 

R is for ridiculous 

C is for cunning 

O is for obnoxious 

I is for insidious

D is for devastating 

O is for offensive 

S is for sneaky 

I is for inflammatory 

S is for senseless 

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)

Symptoms, Symptoms and Hey..More Symptoms!

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Sarcoidosis is called a “snowflake disease” because no two people experience it exactly the same way. While some people have similar symptoms and stories, the disease is very individualized. How it will progress is anyone’s guess. How each person responds to treatment is also a medical mystery and the number of symptoms one might experience differs greatly. In fact, the symptoms of sarcoidosis are so vast that for today’s “Sarcoidosis Awareness Month” post, I am simply going to list all of the symptoms/complications that I am aware someone can have with this disease. I’m 100% sure that after I publish this list, other suffers will have more to add!

  • Shortness of breath*
  • Dry cough*
  • Chest tightness*
  • Wheezing*
  • Hypoxemia*
  • Pulmonary hypertension
  • Swollen lymph nodes*
  • Headaches/Migraines
  • Fatigue*
  • General malaise*
  • Fevers*
  • Skin sores*
  • Skin discoloration*
  • Itchy skin
  • Rotting teeth
  • Bone pain*
  • Formation of cysts on the bone*
  • Muscle pain*
  • Muscle weakness*
  • Numbness and tingling to extremities
  • Joint pain
  • Arthritis
  • Nerve pain*
  • Small fiber neuropathy*
  • Bell’s palsy
  • Stomach pain
  • Digestive problems
  • Food sensitivities*
  • Bladder problems
  • Problems sleeping/Insomnia
  • Sleep disorders/Sleep apnea
  • Brain fog and confusion*
  • Sexual dysfunction
  • Night sweats
  • Being cold all the time*
  • Wild fluctuations in body temperature
  • Blurred vision
  • Sensitivity to light*
  • Blindness
  • Unintended weight loss*
  • Chest pain
  • Fainting*
  • Dizziness
  • Irregular heartbeat*
  • Edema
  • Complete organ failure
  • Stroke
  • Depression
  • Nasal stuffiness
  • Excessive nasal drip*
  • Frequent nasal infections
  • Hoarse voice
  • Kidney stones
  • Hearing loss
  • Seizures
  • Enlarged liver
  • Enlarged spleen
  • High blood pressure
  • High cholesterol
  • Hypervitaminosis-D
  • Weight gain

(* My symptoms)

A New Take On “So, You Don’t Look Sick”

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Those of us with invisible chronic conditions often hear that we don’t look sick and within our circle, we have a lot of conversation about how this makes us feel. Many talk about how it makes them feel discounted, like what they are experiencing isn’t real or doesn’t matter, simply because it can’t be seen. Plus, we’ve all gotten very good at hiding the subtle side of being persistently sick.

I used to get annoyed when people would tell me that I don’t look sick. I understand the demoralizing feeling that comes with not feeling validated for your experience simply because someone does not understand it. I think this feeling is the strongest when you are newly diagnosed with a chronic disease/disability. Your world is turning upside down and it is a very scary time so validation is very important and, to not get it because you look better than you feel…hurts.

Now that I’ve been diagnosed for several years, I have a few new thoughts to add to the “You don’t look sick” conversation. I no longer get mad. I know how I was before I become chronically ill and while I never meant any malicious intent, I am sure that I said and did ignorant things to people who were in the boat I am in now, without ever realizing what I was doing. So, I cut people who don’t get it a lot more slack. Plus, I just don’t care anymore. I don’t care what other people think about the way I look. I know the truth and that is all that really matters. I also know that just because I suffer constant pain, I have every right to look as good as I want to look!

Recently though, I’ve had a newer thought on the subject. Not that long ago, I saw a person in a wheelchair outside of a store, probably waiting to be picked up. The person that I saw was clearly disabled, cerebral palsy maybe, I don’t know for sure but, whatever this person was living with was not invisible. As I looked at this person, a thought struck me like a thunder bolt and it’s one I never had before. I became grateful that my disease is invisible. I’m not being remotely critical of anyone with a visible disability here. It’s not this person’s fault their disability is visible any more than it is mine isn’t but, I realized that when your disease is invisible, at least you have some control over it. You have control over it in a way you simply don’t when it’s just out there for all to see.

I have a choice to let people know I am chronically ill/disabled or to blend in. I don’t ever have to explain myself to anyone or to receive pitiful looks from people who might wrongly believe my life is harder than theirs just because I can’t do everything I want to do. There is something to be said for being able to blend in when you want to. There are times that blending into every day society is just easier. It gives me an escape from my own reality that the visually disabled never get. I can forget. They can’t. They are reminded of their physical challenges constantly. I am not. I mean I am, because of how I feel but not because of how other people react to me. That’s what I mean when I say, at least I have some control. I can avoid other people’s pitiful pity whenever I want to. I’m actually grateful for that and I’d never thought about the fact that there are actually some advantages to having an invisible illness. This is one of them.

Because my disease/disability is not obvious, I have the advantage of living in two worlds. People don’t stare at me. I don’t feel their glare as I do my grocery shopping or try to enjoy an evening out with friends. I don’t usually have people automatically assume things about me unless I tell them I have an invisible chronic disease. It’s only then that I am sometimes forced to deal with their ignorance but for the visually chronically ill/disabled, dealing with ignorance is a constant. One may not better than the other, invisible versus visible, they are just different. Being chronically ill/disabled is hard but the realization for me that having in invisible illness actually gives me some control, is a new and empowering thought!

47 Things…

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Today is my 47th birthday. I’d really rather not spend it sitting here writing a blog about my life with sarcoidosis. I want to celebrate life today and that’s what I am going to do but, before I do that in honor of my birthday and sarcoidosis awareness month, I will share forty seven things I have learned since being diagnosed with sarcoidosis: (In no particular order)

  1. Live every day like it’s your last

2. Doctors don’t know everything!

3. When you’re blue…write a gratitude list…it always helps change your perspective.

4. Stop doing things you don’t like doing.

5. Eating a clean diet does make you feel better.

6. Regular exercise actually helps fight fatigue.

7. Having a dog is great company on long lonely sick days.

8. The internet can be a magic place for human connection with others in the same boat.

9. Being vegan is awesome!

10. Ultimately we are all alone in the end.

11. Taking time to rest is important.

12. Pushing yourself is a must.

13. Don’t ever give up even when it’s bleak.

14. It always gets better.

15. Being in nature is better than medicine.

16. Taking up hobbies helps fill the time and is good for the brain.

17. You don’t need to explain yourself to other people.

18. Looking your best will help you feel better.

19. It’s okay to get mad but it’s not okay to stay angry.

20. The loss you feel from living with a chronic disease is real.

21. Happiness is a choice.

22. Don’t use your disease as excuse.

23. You can break your sugar addition.

24. Remove stress from your life.

25. Set boundaries that are good for you.

26. Always have goals.

27. If you are having trouble reaching your goals, change your approach.

28. Cry sometimes. It’s good for you.

29. Laugh every day.

30. Have a sense of humor about yourself.

31. Don’t expect other people to understand what your disease puts you through.

32. Life is short.

33. Don’t let sarcoidosis define you. You are more than your disease.

34. If you’re always right…you won’t be happy.

35. It’s okay that you world got smaller.

36. Tell the ones you love how you feel about them.

37. Be nice…you never know what another person is going through.

38. Life is beautiful.

39. Cooking healthy food can be fun.

40. Don’t give up on a cure!

41. Keep your doctor appointments even when you don’t want to go.

42. Other people will give you advice you didn’t ask for and don’t need.

43. In every difficult situation, look for the lesson.

44. Be present.

45. Have fun with your brain fog.

46. Don’t live in the past.

47. Life is what you make it.

The Odd Couple

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sarcoid changed my life

So far for sarcoidosis awareness month, I’ve written a lot about the challenges I and others face. It’s probably a no brainer to some degree, to understand that diseases are hard to live with, even ones most people know little about or have never heard of. Sarcoidosis is hard to live with and I make no bones about that. There is however, another side to life with this disease and I think it deserves to be highlighted. Some with this disease may agree with me and some may not. I can only speak from my own experience on this one.

With all the darkness that comes from life in a diseased body, there also comes equal and sometimes greater light. That light, isn’t exactly a light. It’s enlightenment. Having a chronic, life changing disease gave me a couple of options. I could either wither and drown in its presence, allowing it to define my entire world view or, I could use my struggles with it to build my inner strength and summon courage I never knew I had to change my world view. Sarcoidosis put me at a crossroad and I had a decision to make…wilt or thrive.

Over the years that I’ve had this disease, I have grieved losses. My body no longer cooperates the way I want it too. Breath does not come easily. I have lost friends who have moved on without me because I can’t keep up and I lost a career that I loved. I would be foolish to deny there hasn’t been emotional pain and real hardship from having sarcoidosis and I’m generally not known to be a fool. Yet despite these losses, or maybe because of them, I have become acutely aware of what really matters.

Sarcoidosis and gratitude are an odd coupling but I have to say that since being diagnosed with this disease and settling into all that it means to have it, I have become an extremely grateful human being. There is something about losing the ease of good health, that made me realize how much I took for granted. I didn’t see that what I thought I deserved, what I thought I earned, really never actually belonged to me.

One could argue that sarcoidosis took my life and it did. It took my life as I was knew it but, I would argue that it gave me a new one, one I did not ask for but one I find myself in a place of great comfort to have. Were it not for this disease, I would still be flitting about fusing over all the nuances in my life that aren’t just so. I would be bouncing from superficial problem to superficial problem, putting my energy and effort into frivolous endeavors. I don’t care anymore who said what to who or why. I’m no longer focused on getting my fair share. I don’t keep score and I don’t compare myself to anyone else.

I’m not saying that before this disease I was shallow and unable to appreciate my life. I’ve always had some awareness that my life is blessed but, there is something powerful in being humbled by illness and disease. It has changed me. The blessings I feel now are far greater in number and much more deeply rooted in the understanding that I don’t actually deserve the good that I have. I am, for reasons not known to me, favored. Sarcoidosis has actually taught me to think this way, to see life as an immeasurable gift, something to be cherished….even when it’s difficult.

This might sound disingenuous, but part of me is actually very grateful for my disease and that’s the truth. This peaceful reality hasn’t always been true. I was angry about being sick once. I was sad about it too. Sometimes I’m still sad about it but I don’t get angry about it anymore. I’ve come to understand that every person carries their own heavy load of something. Mine happens to be navigating a life with a chronic and potentially life threatening disease. It hasn’t been an easy experience but it has been an insightful one.

Sarcoidosis has been my greatest teacher, a mentor of sorts. It has taught me how to accept what is ultimately out of my control and in that process, it has shown me that the only thing that I’ve ever really had control over is my attitude and reaction to any given situation. Sarcoidosis has taken but it has also given and because of this I have learned the value of appreciating what I have when I have it because it might be gone tomorrow.

I don’t know what lies ahead for me in regard to my disease but I know whatever the future holds, I will face it with grace and I will deal with it from a place of thanksgiving for the life I have already had. Having sarcoidosis does not take away my ability to be joyful and to see the what is good all around me. If anything, having sarcoidosis has only magnified my desire to be at peace with the world and to accept what is as what is meant to be.