Who Are You?

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“I don’t define you by your religion.

I don’t define you by your politics.

I don’t define you by the way you look.

I don’t define you by the color of your skin.

I don’t define you by where you live.

I don’t define you by how you live.

I DO define you by how you interact in the world.

Are you kind or are you cruel?

Are you fair or are you biased?

Are you open or are you closed?

Are you willing or are you resistant?

Are you peaceful or are you violent?

Are you aware or are you oblivious?

Are you the solution or are you the problem?

I embrace our differences and cherish our diversity.

Are you able to afford me the same courtesies I afford you?”

-Sarcoidosissoldier

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Swiss Cheese, Demons and New Battle Plans

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While I loath to admit this, my disease has taken parts of me and much like swiss cheese, I feel like a person with many holes now.

Much of the time I am able to make peace with these cavities and I can accept them for what they are. Much of the time I am able to focus on my appreciation for the rewards and blessings in my life. Much of the time I do not dwell in dark gloomy hollows. Much of the time I still recognize who I am despite the gaps. Much of the time I can deal with the trials presented me, grateful for the lessons that await.

But once and awhile, during a quiet moment in the stillness of the night, I struggle. What troubles me the most, beyond the uncertainty of the future, is if I am really handling myself well and truly making the best of living with my illness. Should I go back to work? Is it really okay for me to be home? Am I really happier now than I was before I got sick or am I kidding myself? Do I really like a quieter life now or am I living in denial? And so on and so on…

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Frankly, I feel like a wimp sometimes. I know other people struggle through far worse situations and circumstances than I do. I know that even though my health has been compromised, it is not as severe in comparison to many others who go on to achieve great things despite or perhaps because of their illnesses or disabilities. I, on the other hand, simply don’t measure up.

So these are demons I fight in those troubled still moments in the deepest dark places of night.

And in truth, I don’t always know how to quiet these monsters as they leave new holes in my life…uncertainty, insecurity and inadequacy.

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What I do know is this…even though I don’t always know what to do about these demons, I cannot let them win and I won’t. Instead, like a good general leading her army, I must review my battle plans, finding new ways to attack these enemies so that I can strive to live a peaceful life, free of comparison, useless self judgment and unnecessary doubt.

Reissuing “The 100 Challenge”

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In the spirit of the season, a time to acknowledge our blessings, I am reissuing “The 100 Challenge” which I encouraged folks to take part in a few days ago.

(https://sarcoidsoldier.wordpress.com/2014/11/22/the-100-challenge/)

And to prove there is never a shortage of things to give thanks for, I will create a new list of 100 things in my own life that I am grateful for, bring me joy or make me happy.

1) The excitement of possibly breeding our puppy

2) Interesting TED Talks

3) Waking from a really good nights sleep free of muscle cramps

4) The first light of day

5) Cheating my vegan diet with a McDonald’s hot fudge sunday

6) Trips to NYC

7) An upcoming visit from my step father

8) Peanut butter

9) Breakfast in bed

10) Scarfs

11) Low fatigue days

12) Really good quotes

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13) Being able to keep my house plants alive

14) Playing in a pile of recently raked leaves

15) The taste of really good homemade pasta sauce

16) Memories of my mother

17) The smile on my husband’s face when his beloved Chicago Blackhawks win a hockey game

18) Springbox jigsaw puzzles

19) Trying to look my best even when I don’t feel well

20) Playing euchre

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21) Drinking a cold glass of orange juice every morning

22) Having a working refrigerator

23) Electricity

24) New hobbies

25) Being able to connect with other people who suffer with the same disease I have – especially my friends Betty and Kelly

26) Good neighbors

27) Hearing the garage door open knowing my husband has come home from work

28) The Law and Order Franchise

29) Ear plugs so I don’t have to listen to my husband snore at night

30) Independent Films

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31) Days I only use my rescue inhaler once

32) The view from the Washington Monument

33) The DC Monuments lite up at night

35) The National Mall at Christmas time

36) Making smart decisions

37) Being spontaneous

38) A freshly made bed

39) Making vegetarian stew in my slow cooker

40) That feeling of relief when my husband comes home from a business trip

41) Crossword puzzles

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42) The beauty of the Savannah River rapids

43) A quiet mind

44) Moments free of worry

45) The smell of freshly baked goods

46) The change of seasons

47) Watching my puppy chase the vacuum cleaner…hilarious

48) Being in historical places

49) The way a fresh pair of jeans fit perfectly when you first put them on

50) Bunny rabbits in my backyard

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51) Looking for alligators on Hilton Head Island

52) Visiting beautiful old European cities

54) Having a sheepdog curled up on my feet when I sit on the couch

55) Clean teeth

56) Taking time to be grateful every day

57) Knowing when things are tough…they could always be worse

58) Ken Burns documentaries

59) Good surprises

60) Fluffy pillows

61) People who dedicate their lives to saving our planet…especially those who work with endangered animals

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62) NPR News

63) PBS documentary programs like Frontline and American Experience

64) A really good salad

65) The taste of a crisp sweet apple

66) Remembering to have a sense of humor about myself

67) Knowing when I am having a bad day that I can start over

69) Knowing that love DOES mean having to say you’re sorry sometimes

70) The art of compromise

71) The way ginger ale quiets my frequently upset tummy

72) Never losing hope that one day I will be able to get off my current medications or at least some of them

73) Forging a new life for myself despite now being chronically ill

74) Watching “When Harry Met Sally” every Christmas season with my husband

75) Christmas Carols

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76) An organized closet

77) Brooms…no wait…the Swiffer!

78) Boots

79) Petting zoos

80) Donkeys

81) The fact that my mother and step father provided me a stable home in which to grow up

82) The wisdom that comes with aging

83) The way my dogs can actually tell time with their stomachs (They never fail to let me know when it’s meal time and they are usually right….give or take 30 minutes)

84) Tree sloth…how does nature create one of these? So cool!

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85) That I only have to think of 15 more things to be grateful for or happy about on this list

86) Black beans and rice

87) Anticipation of good things to come

88) Memories of spending time with my family on Keuka Lake

89) Watching the Grand Slams (Tennis)

90) Learning to have a better perspective on what is important and what isn’t

91) The Declaration of Independence and The Gettsyburg Address

92) The sound of the frogs in our backyard in summertime

93) Sea horses

94) Actually having a good idea for a blog

95) The fact that my dogs make a lot of people smile

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96) Knowing every day is a new adventure

97) Being happy spending a quiet night at home

98) Dancing to a really fun song

99) Kindness in all its forms

100) Grace and mercy for everyone

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A Very Vegan Thanksgiving

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Thanksgiving is a holiday known for three things…turkey, football and family.

I can tell you that when you are a vegan, Thanksgiving is also known for three things…getting strange stares at the dinner table as you pass the carved turkey platter to the next guest without taking any, football and family complaining that you didn’t eat enough.

Showing up to a Thanksgiving holiday celebration when you are a vegan is like arriving from another planet; A planet where you look like everyone else but you don’t speak the same language. Everyone is polite to you but they don’t understand your foreign ways and they are just a little fearful and suspicious of your strange manner.

Being a vegan on Thanksgiving is much like being a record stuck in a groove, having to explain over and over again why you don’t eat turkey or the stuffing that came out of the bird or the green bean casserole or the sweet potatoes smothered in butter or the rolls or the pumpkin pie.

Being vegan on Thanksgiving means you are the only person left at the end of the meal not rubbing your stomach in agony and who’s pants are still zipped.

Being vegan on Thanksgiving is accepting that people will think something is wrong with you.

Being vegan on Thanksgiving means freedom from the post meal “turkey coma”.

Being vegan on Thanksgiving means having to put up with people who think you’re smug and maybe you are…just a little bit…as you eat specially prepared steamed vegetables and everyone else gorges on plate after plate after plate of delicious fat buttery goodness until someone finally decides they are so full that it’s time to lay on the floor and moan.

This behavior is strange and a little scary to the vegan but signals that the celebration is over and its time to get back in their UFO and go home.

Oh The Glamour Of A Day In The Life…

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She wakes at 5 am to her husband’s alarm for work with her eyes strained as the bedside lamp is turned on. The dogs stir, hungry for their first meal of the day and anxious to do their “business”. She stumbles and staggers down the stairs, tangled in puppy paws with her eyes half shut, the animals are fed.

As they eat, she uses the time to assess aches, pains and likely health concerns for the day. She can tell that fatigue is already present but not bad…not yet anyway. She puts the dogs out and kisses her husband goodbye for a long day’s work.

She is alone…again.

In an attempt to fight off a day of grueling exhaustion and after the pups return from the safety of a fenced backyard and all necessary “business” has been handled, she goes back to bed for a few hours rest, resulting in a tangled web of sheets and blankets as comfort remains ever elusive.

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The sun begins to peak through clouds and as the morning fog abates, the day that awaits looks full of promise…for the dogs.

Finally she rises near 8 am, with her slippers on to warm her cold aching feet and begins the trek downstairs once again with the dogs like velcro at her ankle. She stands in the kitchen, staring into space, the fog may have lifted outside but it continues to curtain her brain like a thick spider web of confusion. Finally she remembers that it is time for her morning pills and possibly breakfast if her stomach is agreeable today. She never really knows from day to day.

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The house is painfully quiet so she turns the TV is on in hopes of learning of overnight news and breaking stories. Eventually she begins to channel surf and the realization that daytime TV is lousy stings her like a slap to the face with an open hand. The TV, her only friend of the day has betrayed her again! She turns it off.

After much self convincing, it’s time to walk the dogs and then if energy allows it, a work out. Once the sweat dries, she rewards herself with a warm soapy shower that feels good on flaming bones and tortured joints.

With high hopes, she reviews a list of chores that await completion. Her hopes are quickly dashed as unrelenting fatigue now settles into every muscle and a morning full of labored breathing takes its toll.

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The couch calls out to her. She resists but eventually the couch wins the battle and she flops on it with a heavy regretful sigh, her body a mess of cramps, twinges, pangs and throbs. She opens her lap top, turns it on and checks her email. She looks to see if there are any new interesting blogs to read. The dogs are in a lump of fur curled up together on their bed dreaming of chasing cats. Suddenly, it occurs to her how tired she is. She takes a nap.

Upon waking up, boredom set in as the long afternoon lingers. As her chore list grows, she realizes her self esteem begins to shrink. Her emotions run high as her physical strength is drained. She fights off a quiet unrelenting sorrow.

She makes the best of it and turns on Netflix to watch a movie. Maybe she reads a book. Perhaps she’ll get a jump on her blog writing. Occasionally her friends call to check in. If she is lucky, inspiration will hit her and she works on her jewelry designing.

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Uneventfully, late afternoon arrives and her thoughts turn to the task of making dinner. She summons energy and strength. She turns on the kitchen light and pots are placed on the stove top, vegetables chopped and salad made. The dogs begin to stir smelling food and hoping for scraps.

The cooking and waiting begin.

Eventually her husband comes home. The dogs bark.

Dinner is complete. Dishes washed. The day is done.

Bones are weary. Joints stiffen. Muscles ache. Stomach hurts.

It all starts again tomorrow…another day of glamour in the life of active sarcoidosis.

Abby…The Wrong Dog…For The Right People

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Abby, our nine month old has come into her first “season”. Yes that’s right, while women might say things like “ladies days” or “that time of month”, a female dog….I mean dam…goes into “season”.

This is our virgin experience with a dam entering her first “season”. Zoey, our 12 year old girl was fixed before she had the pleasure of this experience and before that we had male dogs. So this evening when we got the brushes out, prepared for the at least weekly back breaking task of pulling a brush through an Old English Sheepdog’s fur, we were concerned to notice that Abby had some bloody discharge.

Due to our ignorance on the delicate topic of our dog’s “coming of age”, we quickly dialed our breeder’s number and much to our relief, she answered on the second ring. After providing us soothing, reassuring advice that we are not actually terrible pet parents for not knowing what to do for Abby, our conversation turned to breeding, a topic we have been pondering for awhile. (https://sarcoidsoldier.wordpress.com/2014/11/01/to-breed-or-not-to-breed-that-is-the-question/)

Our breeder is an expert on all things Old English Sheepdog. And when I say this, I am not kidding. She has dogs who have won best in breed at the prestigious Westminster Dog Show. She co-owns show dogs all over the country. Breeders like these are very special because their goal, beyond winning, is to keep the breed thriving and healthy.

We’ve never had an interest in showing a dog so our breeder likes us because she needs good loving homes for pups that don’t end up being show quality…the “loser” dogs as we affectionately call them. She prefers to give her dogs, no matter their “station”, to people who already have experience caring for the breed because they are a tremendous amount of work. Owning one is a true labor of love.

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Abby came from a litter of 8 pups…five male and three female. We really didn’t care which one we got and fully expected to get a “loser.”

Our goal in getting a second dog was simple…to ease the transition of my one day losing Zoey….something I remain in denial will ever happen! We also thought it would be fun to add a new family member to our little clan.

Last night in our chat with the breeder, she informed us that we actually took home a different dog than the one chosen for us. We were supposed to get a smaller female who was not show quality, one that was specifically temperament tested for a home with an older dog, but the woman who is the primary owner of Abby’s mother, a co-owner with our breeder, gave us the wrong dog!

And much to our surprise, we also learned that Abby was not only the wrong dog for us but was also the pick of the litter. She was supposed to go to a home in New Jersey and become a show dog. What a different life she would have had!

We shouldn’t be surprised though…I mean look at her. She’s beautiful!

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She might have been the wrong dog but she was given to the right people and she will have a wonderful life with us. We couldn’t be happier to have her as part of our tribe.

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Betrayal And Redemption

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To be betrayed is to endure trickery.

To be betrayed is survive treachery.

To be betrayed is to be let down.

To be betrayed is face deception.

To be betrayed is to experience a double crossing.

This is life in a chronically ill body.

Redemption is the act of salvation.

Redemption is forgiveness.

Redemption is the act of making something better.

Redemption is freedom from harm.

Redemption is deliverance.

These are the lessons from life in a chronically ill body.