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.

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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.

24 Hours Of Choices

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I’ve come to the simple conclusion that while much happens in life out of my control, life is still what I make it. Every day that I am blessed to wake up, having sarcoidosis has taught me that I face one simple question. Will I rise and fight or will I give in? What will I do with this day, this one set of 24 hours I have been given? Will I spend it feeling sorry for myself and lamenting over what has been lost or will I focus on the joy in front of me? Will I be kind to others or cruel because I don’t feel well?

The choice is mine and what I do dictates how my day will go…day after day…one day at a time…until a life has emerged around how I am make my choices 24 hours at a time. I am not a victim of my circumstances. I can pick myself up and keep going.

Today, this day, in this 24 hours of time, I choose happiness. I choose acceptance. I choose peace. I choose love. I choose kindness. I choose a good life.

Lemons And Lemonade

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Yesterday was a strange day for me. We made big plans to go to a state park that we had never been to but had been told was beautiful. The park is about an hour and a half to two hours from our home, most of that journey taken on back country roads through tiny towns that are nearly deserted. We packed the camera, some sunblock, our water shoes because there is a creek there with a rock bed that is supposed to be fun to explore. We also packed a towel and some water to drink. We opted not to bring our dogs since this was our first time adventuring in this particular place. We figured that if we loved it, we’d want to go back again and we’d know from this visit if it is really a good place to bring them.

The beginning of our journey started out fine. It was fun actually. We were driving a loaner Lexus since my husband’s is in the shop and it’s pretty sweet ride. We cranked up the tunes and the was sun shining brightly. I was excited to get out of the house and do something different. Sarcoidosis tends to keep me close to home, so these small adventures go a long way toward picking up my spirits.

Half way through our ride to the park, the clouds started to roll in. They were big white puffy ones at first, so we didn’t think much of them and continued to sing along to our own version of “carpool karaoke”, in a happy oblivion. Life was feeling pretty good. I was looking forward to getting out in nature with my camera someplace new. I always enjoy seeing new places through my camera lens. I think I see things I would not otherwise see this way and capturing just the right shot gives me a feeling of pride.

Then it happened. Lemons. The clouds turned darker and soon it was dark as night at 2 pm in the afternoon. At first the rain drops were big ones and my husband mentioned that big rain drops usually means it will pass quickly. I don’t know if that was denial or hopefulness but either way, we were closer to the park than we were to home so we felt there was no going back. By the time we arrived at the park’s gate, we were in a the mist of a torrential downpour with no end is sight. The clouds were low, black and thick. We sat in the car, disappointed and wondering what to do next. I was particularly bummed because this was going to be a nice outing for me, a way to reset my spirit in preparation for another week of the tedious nature of life with my disease.

My husband got over the rain pretty quickly. He turned to me and said, “We are 30 miles for an outlet mall. Let’s go there and shop and then we can go out to eat.” He reminded me that we were together, we were out and about and that it didn’t really matter where we were so long as we made a conscious decision to enjoy ourselves. So there it was…lemonade. And, so easy to make out of a disappointing situation. I needed him to be the one to make the lemonade too because, I fully admit that the rain really bummed me out. I had high expectations for the day and I wasn’t going to be able to turn it around without some help in seeing things a different way.

This made me realize that sometimes, it is okay for someone else to help us see things more clearly. It is okay to feel letdown but it is better to let it go whenever we are able and to try to find the brighter side of unexpected disappointment. It was a good reminder that sometimes the only thing we have control over is our own attitude. Being chronically ill is hard and I am often faced with various disappointment…my body doesn’t work the way I want it to, I lose my train of thought, fatigue and pain cloud my judgement, I do stupid things, I forget words. This disease has changed me. My shine has been dulled. I am aware that I am irrevocably damaged in a way I wasn’t before I was diagnosed with sarcoidosis.

The irony is that because of this, I am by nature, a much more positive person now. Sarcoidosis knocked me down and cracked my ego but I got back up and dusted myself off. Sure, I am bruised and batter but I haven’t stopped trying to live my life despite the challenges thrown my way. I think this disease has generally taught me how to be a kinder, gentler, more understanding person. It has forced me to become much more patient with myself and now I find I am that way with others as well. I know that life is short and life is fragile and that life is a thing to be cherish and appreciated. I don’t take small joys for granted anymore. For all these things I am, in a strange way, grateful for this lemon called sarcoidosis. I have for the most part learned how to turn it into lemonade. Every once and awhile though, when my own reserves are low, I need the benefit of someone else’s wisdom to turn my disappointments into something sweet. Lemons or lemonade? The choice is ours to make.

A Dawn Or Dusk Kind Of Time

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Everyone goes through it from time to time. I’m going through it now. It’s that feeling that your life is disturbed in some way, dissolution takes hold and you feel you are in one of these in-between places where the world is not quite light and not quite dark. It’s a dawn or dusk kind of time and it is disquietingly uncomfortable.

When I first stopped working because my sarcoidosis was raging, it was without a doubt, one of the best decisions I could have made. It was healing and it was the ultimate act of self care. I have been utterly and entirely grateful that we are in a position where I could do this because I never did quality for disability. I was told I was young enough to be “retrained to do something less stressful.” It’s okay. We’ve managed. That first year of being freed of the stress and overwhelming responsibilities of a very difficult job was therapeutic. I was able to rest my body for the first time in years and slowly, I was able to gain back some strength.

The second year I was not working was actually kind of fun. I was feeling well enough to do a little traveling and we got a new puppy. I had many pleasant distractions and my friends had not yet forgotten all about me so there always a weekly lunch or two planned. I felt like a human being again for the first time in years and I was happy, truly and completely happy. I remember that year with great fondness.

I’m now deep into year three of not working and this year has been difficult. It kind of all started when I severely sprained my ankle last autumn, only to learn that I also have bone spurs and sarcoid in the bone marrow now. As is often the case with sarcoidosis, it took many months to heal and even now ten months later, the ankle is still not quite right. It’s weaker and it swells from time to time and it aches all the time. Around this time, we also allowed a family member of mine to move in with us for a month so he could get back on his feet. We had hoped, although did not expect, that doing this would help him make positive changes and better choices. That did not happen. He has since moved out and we don’t speak much, if at all.

I haven’t traveled at all this year. I don’t see my friends much anymore. They all work, have families and lives of their own. This year I have been alone a lot more. I like being alone but I am still a people kind of person. My health has been isolating. My body is becoming more disagreeable than it was a couple of years ago. It’s small things but they add up. I’m not breathing as well, I have difficulty standing and walking for long periods of time and I tire very easily. So, life feels stagnant. It’s quiet but it’s an uncomfortable quiet. It’s not a peaceful, loving life kind of feeling this year. I feel a little like sarcoidosis actually knocked me off course and I am just realizing now that I am is lost. All the things that used to define me have changed. I’m no longer a boss, no longer a striver, no longer a worker bee, no longer an income producer.

There are times I feel like a layabout. I know that I am not. I know that I have a serious medical condition that zaps the life out of me but it is this feeling that creates a rising sense of panic inside of me sometimes. I look around me and see other people who struggle and appear to be more engaged in the world than I am and I begin to feel like a failure. I’m not trying hard enough. I am not striving as I should be. These are very old familiar feelings. They are feelings that probably helped get me sick in the first place or, at the very least, have had a negative impact on my overall well being. They are stressful feelings. They are demoralizing feelings. I know I should not compare myself to others.

The reality is that my life took a turn that I didn’t see coming. No one ever does when they are healthy. Our health, when we have it, is something we simply take for granted. I’m not healthy anymore. I have had to learn to do a lot of things differently and my life has changed in ways that are both complicated and incredibly boring. In truth, a part of me has never entirely made peace with not working. I know I needed to stop what I was doing then at that time. The job and the company I worked for were toxic to my health and that was not going to change. I did the right thing then but now I am left to wonder what the right thing for me is now.

I am left to wait it out, in an uncomfortable, confusing, mixed up time of transition, a dawn or dusk kind of time, a time of unknowns and loneliness. This is a time of stillness for me and times of stillness can be uneasy. It’s like eating dinner with someone and no one is talking. You want to fill the quiet with words just make the silence go away but you can’t think of anything meaningful or interesting to say. I am sitting in that kind of silence in my life right now. I am waiting for inspiration. I am seeking direction and purpose but until I find it, I just have to accept this unease and allow myself to embrace the awkwardness that comes with having no idea what you are supposed to be doing.

The “If Only” Game…

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If only I…Maybe I could have or should have…Why didn’t I…

These are all just different versions of the same game. That game is the “If Only” game, the ways we torment ourselves for what we think we should have or could have done differently. They are the vocalizations of our regret for our actions or our inaction. We’ve all played this game and the result is always the same. There are no winners, only losers.

We cannot change the past. We can only learn from it.

Life is a series of decisions, choices we are forced to make only with the information available to us at the time. We are not omniscient. We can’t always predict the outcome of our actions or the effect they will have on others or ourselves.

Perhaps if I just…I thought if I…Suppose I missed something…

The “If Only” game is a game of regret, full of uncertainty and pain. It keeps us tied to a time we cannot change and hampers us from moving onward. We must own our regret, accept our mistakes, apologize when necessary but we also must let go of what cannot be changed and what is no longer.

Playing the “If Only” game is not a game of chance. The outcome of playing this game is the same every time. It bogs us down in unhappiness and feeds our disappointment. The “If Only” game takes our hope and squishes it, destroys our dreams and ruins our relationships. Things don’t always turn how we want them to be but we can only change them now when we let go of what has passed.

Each new day is an opportunity to forgive ourselves for what we have done and what we have left undone. It is a chance to start fresh, to regroup and to step forward into a new beginning. What we do with each day is up to us. We can live a life filled with guilt and remorse, lamenting over what could have been or we can opt to make a fresh start, knowing that the “If Only” game is not a game worth playing at all.

50 “SarcoidosisSoldier” Life Lessons

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  1. No matter what happens to us, we control how we respond to it.
  2. Don’t take any drugs a doctor prescribes before knowing the full extend of their side effects.
  3. Life is too short not to laugh every day.
  4. Go to bed with gratitude in your heart for what was good about your day.
  5. Wake up each morning thinking about who and what you love most.
  6. Eat a lot of fruits and veggies.
  7. Put down the donut.
  8. Get some exercise.
  9. Don’t make excuses about anything.
  10. Rest when you need to but don’t be lazy because life is too short for laziness.
  11. Admit mistakes and apologize when you are wrong.
  12. Another person’s bad attitude doesn’t have to be our problem.
  13. Avoid drama.
  14. Watch sunsets.
  15. Sit by the sea whenever you can.
  16. All politicians lie.
  17. We don’t have to agree to get along.
  18. Diversity of thought is a good thing.
  19. We cannot win if we don’t ever play the game.
  20. Mistakes are as important as success if we are willing to learn from them.
  21. Not all battles are worth the fight.
  22. Take care of your body as it is the only place you have to live.
  23. Get a dog so you can truly experience unconditional love.
  24. Be a good advocate for your needs because others cannot read your mind.
  25. Don’t look behind you…you’re not going that way.
  26. It’s okay to change direction.
  27. We can’t always get what we want.
  28. Sometimes the thing we want most isn’t good for us.
  29. Live your life your way and let others do the same.
  30. Judging others will come back to bite you.
  31. Ignorance is not always bliss but sometimes it is.
  32. There is life left to live after grief and loss.
  33. No one person can meet all of your needs.
  34. Do what you say and say what you mean.
  35. If you can’t do what you say, explain yourself without excuses.
  36. Actions matter…so does inaction.
  37. You cannot unsay something.
  38. There is nothing like losing something to make you appreciate it.
  39. Don’t take your loved ones for granted.
  40. Our health matters…without it everything is harder.
  41. Don’t believe everything you hear or read…if it sounds wrong, it probably is.
  42. Live an examined life.
  43. Be kind to strangers…you don’t know what they are going through.
  44. If you hear music…dance!
  45. An academic education is important but so is the school of life.
  46. If you have all of your senses…use them!
  47. Eat to live…not the other way around.
  48. Taking the high road sometimes means walking away.
  49. Showing weakness can actually be a sign of strength.
  50. Be honest with yourself…always.