Unsung Heros

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I have spent a lot of time in doctor’s offices over the last several years thanks to my sarcoidosis. I’ve had positive and negative experiences. Today, I was in a new doctor’s office. I was in today for a follow up and the nurse came in and said, “Lisa, I am praying for you. You are on my prayer list. I really hope we can help you and bring you some ease.”

This comment just about brought me to tears. It was heartfelt and sincere. It also came right at a moment when I needed encouragement and kindness. She could not have known this either, because I have become a master of wearing a game face whenever I am at a doctor’s office. This got me thinking about how many truly wonderful healthcare professionals I have met over the years and that so many of them are actually quiet unsung heroes who come into work every day, putting their own problems aside, to care for those who have greater needs. These professionals change lives for the better with a simple smile, a soft touch and warm words of support.

When you have a rare disease, you do meet a lot of healthcare professionals who are dismissive. They act with arrogance, often because a disease like mine stumps them and challenges their education. Some doctors take offense when it becomes obvious that I know more about my disease than they do. Beyond the ego of the white coats though are the condescending, patronizing, hurried nurses. They are the worst. Nurses even more than doctors can make or break an appointment. They often set the tone. Unfortunately, these doctors and nurses tend to get most of the attention from a community like mine, those of us with rare diseases. I know that I am more apt to complain, whine and express frustration over these people. Yet, when I come across a healthcare professional who is not only competent but who is entirely compassionate in their approach with me, I rarely take notice. Yes, of course this is how healthcare professionals should act, but they too are human and they too have a world of their own stresses and problems outside of work.

Today it occurred to me that there are a lot of wonderful people working in healthcare and I have met many who I can tell truly care about me, not just as a patient but, as a person. Rarely have I taken the time to truly appreciate these people. They are simply overlooked and taken for granted but I don’t want to take these lovely people for granted anymore and I believe they deserve, not only my recognition but, also my thanks. So, this blog post is dedicated to everyone I have met who has cared for me over the years and done so with tender loving kindness and with selflessness because professionals like these have made my journey as a patient less frightening, less intimidating and less humiliating.

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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 Student Of Life

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When I meet new people I usually get asked two questions…”Do you have children?” This is a pretty standard question I think that most women get asked. It’s an uncomfortable question to answer when the answer is “no.” Often, people don’t know what to say after that so the conversation drifts off. I guess all women are supposed to have children, even if for the sole purpose of having something to talk about.

The other question that comes up is, “Do you work?” This is another problem question for me because again the answer is “no.” So, no kids and no work. What does my life consist of then, one begins to wonder. I can tell they wonder this by the look on their face, all scrunched up with a crease between their brow. It is obviously perplexing to people that I am childless and unemployed and it is equality uncomfortable for me to give these answers, simply because I know what the response will be.

It would seem that many people define themselves through parenthood and through their work. I can’t speak to the parenthood part, but I know that I used to define myself through my career, so I can see to some extent, the compulsion to define ourselves by what we do. Now that I don’t “do” anything, explaining myself to others has become a bit of a challenge and I often find myself needlessly embarrassed.

This happened today when we met our new neighbors. I was asked first if I had children. “No.” A quite lull ensued and then I was asked what I do for a living and when I said, “I don’t work” another lull, this time longer. I felt the need to fill the uncomfortable silence so I told complete strangers about having sarcoidosis and becoming a blogger. Telling people you just met that you don’t work because you have a rare and chronic disease doesn’t go over well either because in fairness, how exactly are you supposed to respond to that? So, the conundrum continues.

Ironically, having this disease has actually taught me a valuable but, hardly known, little secret. We are more than what we do or who we raise. We are more than parents and we are more than our careers. I can’t tell you how I know this now, I just do. I suspect it’s because I have actually had what once defined me striped away and while I struggle a bit to accept my new identity, I realize that I only struggle because of the social norms we live by. Life is wide up to us. We can be anything and we are all many things.

I happen to be a social worker/healthcare administrator in early retirement because of an unpredictable and unwelcome chronic illness. I am also an awesome wife in a successfully blissful marriage of nearly twenty years. I am a darn good homemaker. I am a blogger and an administrator for two online sarcoidosis support groups. I am an encourager. I am the mother of two adorable sheepdogs. I am a very good and loyal friend to those who have been that to me and I am a daughter and an aunt who loves her nieces and nephews fiercely even when I don’t get to spend much time with them. I am a sister and although sometimes an absent one, I adore my siblings. I am a good neighbor and I am a nice person…most of the time. I am a jewelry maker. I am a vegan who also happens to be an excellent cook. I am a person who looks for gratitude in everyday life. I am someone who appreciates simple things. I am a tennis player. I am a biker. I am a problem solver and I have learned how to make the best of the hand I have been dealt.

Some might call me a “survivor” but I don’t agree. I am not a “survivor”. I am a thriver. I am learning to embrace an imperfect quest for peace and happiness. I am a student of life and I hope to receive high marks when the journey is over. So, the next time someone asks what I do, I think I’ll just say that I’m a person who is just trying to live a good life.

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.

Top Ten Things To Know About Me Now That I Have Sarcoidosis

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  1. It feels like someone lit a match in my lungs every time I breath.
  2. I have a very limited amount of energy so if it seems like I’m doing well when you see me, that’s because you are where I am putting that energy.
  3. Looking good does not always mean feeling good. 
  4. I have lost confidence because my body and my brain no longer work properly. 
  5. Having a chronic health condition is often very lonely because you suddenly spend a lot of time alone…trying to keep up can be too overwhelming. 
  6. Travel is no longer comfortable. My world is shrinking and that scares me.
  7. It takes me a long time to physically recover from illness or injury. 
  8. I despise being chronically ill. 
  9. I often try to hide my pain because it makes me feel weak and helpless and I don’t want you to see or think of me that way. 
  10. Having this disease is very hard but it is not the end of the world. I still love my life.

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.