The Dangers Of The Outside World

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Even after all these years living with chronic sarcoidosis, a disease that completely changed my life, a disease that completely changed my body…I am still sometimes astounded at what a fragile creature I have become. I am taken aback by the need to keep my world small and controlled. I take for granted the value of my daily routine and only notice how dependent I am upon it when something forces me to change it. Recent life events, nothing I need bore you with the details about, have forced me to be more active in the “outside” world than I would normally be. These events have taken me out of my daily routine. They have been stressful events and I have had to push myself physically in ways that I usually don’t and now my body feels shattered.

I will figure out how to put the pieces back together. I always do. This isn’t the first, nor will it be last time, I will feel this way. Feeling overwhelmed by pain, fevers and fatigue is a constant struggle living with chronic sarcoidosis. Outside forces have a way of inflicting themselves on me from time to time and when they do, I often find that being taken out of my very carefully crafted routine, leaves me pained and drained in ways that feel like I have become a wrung out dish rag in need of a good washing.

In recent weeks, I am reminded of the necessity of my routine and that when that routine is broken, I suffer…physically and then emotionally. There is a snowball effect to what happens to me when I leave the delicate world I have created for myself. Sometimes I feel trapped by this world but when events such these occur, I am reminded of what a gift it is to live in a world of my own making, a world that protects me and keeps me healthier than I would otherwise be. It’s a small world but it’s a precious one and I should not take it for granted because it is the only world that gives me peace.

Being reminded of how fragile I am is always a kick in the gut and, maybe that’s because the small peaceful world I have created for myself, the one that keeps me as pain free as possible and helps me manage my fatigue in a way that allows me to feel somewhat human, is well…just that…small. I hate to think that I have to live a small life and being forced out of my routine reminds me of my limits. There is no doubt that living with a chronic disease like sarcoidosis, that can be set off so easily, shrinks a person’s world. And, even though I have a wonderful small world to live in, there is grief and there is loss in having to accept the boundaries placed upon me as a result of being sick.

While I am still sometimes surprised by the ways in which sarcoidosis has changed my world, my body and my life, the reality of my life remains the same. I am physically fragile. My routine is an anchor that keeps my world both small and manageable. I need it like I need the air that I breath and I need to keep the outside forces that haunt this world at bay as much as possible. I am humbled to live in this wee little place but I need not feel insignificant because of it. It’s not my fault I have to live this way. In fact, I need to protect my safe, small, precious, world as if my life depended on it…because it does!

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A Different Kind Of Quest

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You often hear people talk about life needing a purpose, that direction is important and, that without purpose, life is meaningless. Books are written around this idea and people buy them by the thousands. Professional motivational speakers make good livings from trying to sell the idea that life requires intention, that there is some thing, some magical thing, out there that we all must seek and then strive to live up to. People spend years questioning the value of their lives because they question if they are living up to expectation, expectation that is often manufactured and placed upon them by the pressure they feel to excel in their quest to find meaning.

There was a time in my own life when I engaged in the chase, a mad desire to make sense of it all, to find a way to leave my mark on this world and to aspire to be more. There was a level of determination behind my impulse to seek some great truth in life that bordered on obsession. I was restless, anxious and always on the look out for signs that I was doing the right thing to reach a higher design. It was utterly exhausting and, knowing what I know now, a fruitless waste of energy.

My quest started to come to an end back in 2011, around the same time I started the long journey into the world of chronic health problems. Before I was formally diagnosed with sarcoidosis, there were lots of other theories about what was wrong, each one scarier than the last…lupus, MS and even cancer. There were lots of doctor visits and hundreds upon hundreds of dollars in co-pays for various tests, scans, labs and procedures. It was during this time, suddenly thrust into the world of the unwell, a medical mystery no less, that I started to take a different kind of stock in all this business about life’s purpose and meaning.

Over the years that I have become “alternatively well”, have struggled with shortness of breath, body aches, unexplained fevers that come on without notice, nerve damage, bone pain, massive brain fog and fatigue, I have also come to understand a very simple truth. Life has no one set purpose for me. Concepts like purpose and meaning have taken on an entirely new significance for me. I am simply trying to stay alive now. Having sarcoidosis has distilled and purified the essence of life for me. Every day adds up to one thing for me, a gift. I no longer have a need or even a want to chase some great goal and, I find living my life purged of the anxiety to live up to some made up expectation that I am supposed to figure out my “gift” and share it with the world, actually makes life far more meaningful now than it was when I thought I had to figure it all out and achieve something profound.

Having sarcoidosis and living inside a body that doesn’t work properly, has taught me that life’s purpose is not reason or passion or dreams or longings. Life’s purpose is survival in the here and now. I have come to appreciate that health, security and time are not promised, even when you try to do all the “right” things. Now, I live each day, not like it was my last, I honestly don’t have the energy for that, but I live each day with a quiet gratitude, that I am here…that I get to experience another sunrise, a walk with my dog and a hug from my husband.

Life is not about purpose. Life is about gratitude, simple gratitude for the things that are actually taken for granted by those chasing a fabricated higher calling, a deeper meaning, a drive for excellence. Sarcoidosis has taught me that my previous quest for betterment was a wasted effort, that what I thought I should be doing wasn’t really important at all. I was good at my career but I rarely watched a sunset. I hugged my husband but I took it for granted that he’d always be there to hug. Once you face the perils of poor health, you also come to understand time differently. There are only a limited number of sunsets to watch and hugs to be given or had. Live with gratitude and you live with purpose. It’s as simple as that.

From “The Mighty” – A Great Blog For The Chronically Ill

When I read this article…I thought it perfectly and entirely summed up what others need to know about me because of my chronic sarcoidosis. All eight items describe me and it’s as if the writer reached into my head and stole my private thoughts. Number six is especially true for me. I hate to ask for help but more than that, I hate the thought that others might believe I am weak, so I soldier on and sometimes it gets very very very lonely.

https://themighty.com/2016/11/being-sick-and-how-to-be-supportive/

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.

Awareness Now…Awareness Always

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During this month of “Sarcoidosis Awareness”, we are hearing a lot about the disease, what it is and how hard it is to live with. I think bringing awareness to these things and the fact that there is no known cause or cure is important but for those of us who live with this disease, bringing awareness to what it is and how it impacts our world is not something we do once a year for a month. It’s how we live our lives. We spend a lot of time explaining ourselves. Why we are so tried. Why we cough so much. Why we wear an oxygen mask. Why we missed work yesterday. Why we have trouble walking. Why we feel lousy but look good.

People frequently tell us, with confusion and sometimes with accusation, that we don’t look sick. For some reason, our physical appearance becomes a smoke screen for what is really going on, which is fascinating because it means people expect us to walk around looking ill, in dirty sweatpants and no make up, like we don’t actually have a right to look our best. It lulls those without the disease into a false sense of security that we are doing better than we actually are and if we are honest about it, truly, we often play along. It’s just easier to sweep reality under the rug sometimes. But, how we look is not necessarily a measure for how we feel which is why we then end up explaining ourselves and our disease, over and over again like a broken needle on an old fashion record player.

It’s easy to be dismissive of sarcoidosis. Not enough is known about it and there is no true pattern to how it will play out for any given patient. It’s rare and most people have never heard of it. And, it’s generally invisible. We don’t look sick…most of the time. In fact, most of us have learned to mask our pain so well, we can sometimes even fool ourselves into moments of normalcy. Sadly, there is nothing normal about sarcoidosis. There is nothing normal about the contrast in how we feel and how we look and there is nothing normal about having to make a daily assessment about our goals based on our pain and energy levels. There is nothing normal about the losses we have to accept.

We may look like our old selves, but we have changed. We are vulnerable because we have learned that life is fragile. We have come to understand that nothing is to be taken for granted. Our health could turn at any moment, forcing us to say goodbye to the life we are currently living. We understand grief in new and profound ways because may of us have lost careers, friends, homes and more. We’ve become watchers as those around us steam ahead, doing so with no recognition for our inability to keep up. In subtle ways, all around us, we know we’ve been left in the back of the pack. We might finish the race, but we aren’t going to win.

So, come April 30th, you might see less purple splashed on the internet, you might notice that your friends who have sarcoidosis, aren’t posting about it every day and you might see fewer “likes” for posts about the disease. For those of us who have sarcoidosis making people who don’t have it and never heard of it, more aware of it, is a life long event. It will remain something we strive to do until better quality treatment is offered, until the cause and cure are known….until we stop dying.

The Power Of Unburdened Truth

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There are times we don’t talk about my sarcoidosis for weeks at a time. It’s almost as if my disease has just become part of the fabric of our lives. There is little need to discuss it. It is, after all, a known quantity in our lives. I am sick. What else is there to say? Why should we dwell. When all is said and done, we don’t need words to know the impact sarcoidosis has had on me and on us, the loss of income, the slower pace of life, the ease with which I now cry and feel helpless and ineffectual because my lungs burn in a fiery blaze, a blistering ache every time I take a breath and my body writhes in unexpected and mysterious discomfort for reasons no doctor seems to understand and, always at the most inconvenient of times.

Tonight for the first time in quite awhile, we did talk about it. I talked about it. I admitted a rarely spoken ugly fact about living with a chronic disease. I said that it’s hard. I said that I hate it. I don’t like to say these things. I feel like when I do, I give the disease power over me, power I loath to feed that horrible ogre who took up unwelcome residence inside my flesh and organs, my bones and limbs. I do hate it though and that’s the simple truth of the matter.

There are things about becoming persistently unwell that actually make you appreciate life in deeper and more profound ways. Time changes because you realize how much of it you wasted when you were well and worried about stupid, mundane, often petty things, stuff beyond your control, outside of your grasp, the injustice of things not going your way. What I know now because of my sarcoidosis, is that most things don’t turn out as planned and that this is meant to part of the adventure of life, not something to fret over. The unplanned events in life are what build our character because they are what shape us through the choices we make about how we face them.

I am grateful for the knowledge about life that I have gained from being knocked out of the rat race, the constant chase for the next best thing. I no longer have the drive or the need to be the best at everything I do or in the know about every stupid latest fad or fashion. Instead, I find my life of forced simplicity to be an unexpected blessing. There is ease in it. It does give me pause to be still and know that life is not only fleeting, it is profoundly short and when every breath you take is literally painful, well, this just gives you a better understanding of life and death, how the two are intertwined and cannot be unwoven from each other. There is a humanity and a humility that comes with the knowledge that death is forever chasing life. This is a little secret that can only be understood once your very being has been threatened by the mayhem of disease.

Most of the time, in my acute awareness that life is a fragile momentary passage of time on this insanely beautiful planet and, despite the unyielding stumbling blocks of life inside an uncooperative skin, I choose to be grateful. I choose to focus on contentment rather than disappointment. I seek serenity instead of worry. I long for peace instead of disturbance. However, I would be remiss and even a liar, if I didn’t once and awhile admit, despite my abhorrence to the fact that I loath to acknowledge it, having this disease is hard and I do hate it.

So tonight, I let the floodgates open but, only a crack. I released the burden of the all too often unvoiced reality about life with a chronic health condition. I admitted that I feel weary sometimes. I disclosed my loneliness and insecurities. I shed light on the ugly sorrow of a body burdened by disease but I only did this so that these demons cannot swallow me whole. Sometimes the only time the truth can hurt you is when you’re not honest. Feelings are only as powerful as you allow them to be. I do grieve and this disease does make me sad but when I am honest, when I acknowledge my broken heart and liberate myself from being mostly stoic and strong and outwardly fearless in the face of constant uncertain health, I am better able to appreciate the simple joy that is life and I am free to continue living with grace and acceptance of what is rather than what will never be.

The Irrevocable Bond Of A Guardian Angel

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I was chatting with a friend today, who is not only an animal lover, she also has a serious chronic health condition. She was asking me how I am doing with my grief over losing Zoey. For those who don’t know, Zoey was my fourteen year old Old English Sheepdog. She wasn’t sick when she died even though she was old. According the vet, she had a sudden and unexpected “neurological event.” I have been in shock and sorrow since it happened. If truth be told, I am reeling in grief. My friends have been very supportive since this happened and this particular friend said something that has stuck with me all day. She talked about how our pets, our fur children, as I like to call them, remain loyal to us despite our illness. People often fall away after illness hits us. Their lives move on because the illness didn’t happen them and we struggle to keep up. Our fur kids, they slow down with us. They are more than happy to be by our side, in sickness and in health. They watch over us. They protect us and this only strengthens our bond with them.

Anyone who has a fur kid, loves their animal, of this I am sure, but there is something to be said for the loyalty they do show those of us with chronic illness. There have been times I have been too weak, too fatigued to leave my house because of my sarcoidosis. At those times, I have always been able to count on my fur kids for unquestioning companionship. Zoey knew me in good health and in bad. I think once I got sick, she sensed something about me had changed because the depth of her connection to me, the way she would velcro herself to me became more magnified. She watched over me all the time.

After I got sick, Zoey became my dog. She made herself my dog, a self appointed guardian. She still loved her human daddy but she seemed to make a conscious decision to favor me. We certainly had the opportunity to spend more time together after I stopped working but, the change in her toward me was notable, much more protective. My presence in her life became more important to her too. Her drive to fortify me, to keep me safe, gave her a greater purpose. Her constant attention alleviated the loneliness that only those with chronic illness understand. This was when I think she and I become permanently woven into the core of each other.

Zoey was what another friend of mine called my “heart dog.” I think this describes our bond entirely. She had my heart wrapped up in hers as I did hers in mine. As she aged and needed me more, I was there for her. She had become my security blanket when I needed it because she understood more than any human seemed to know, the depth of my fear from getting sick. I was her protector when age began to steal her confidence. I made a promise to her when she turned twelve that when the day came she no longer had good quality of life, I would do the right thing for her. I had no idea that I would be blessed with two more full, happy and memorable years with her. Nor did I know I would be fortunate enough to have that moment made clear to me. Despite the pain that I feel in losing my security, my “heart dog”, I was able to keep my promise to her. She had fulfilled her purpose, as all dogs long to do. She made my world a better place and she made sure I was going to be okay.

I take a lot of medication for my sarcoidosis. I go to the doctor when I am supposed to. I eat a healthy diet. I exercise and I do all that I can to take care of my physical body since, getting this lousy disease. It was Zoey though, who helped to heal me. I am not in remission from my disease but I know it was Zoey who made me better than I would have been had she not been there during the darkest moments of my disease. She gave me purpose, priceless joy, unequivocal love and a reason to face even my most difficult days. I know now that no matter what happens to me, no matter what this disease does to me, I will always have her spirit to draw strength from. It won’t be the same as having her physically at my feet but she gave me what I needed to cope. She made me a stronger person because she taught me to look for happiness in simple everyday experiences. Zoey and I were side by side in all things. This is what I am most grateful for and also what I mourn the most in her passing. We have an irrevocable bond and I know she is with me always. She will forever be my guardian angel and I can face whatever challenges are ahead of me because I had a love like no other. I had Zoey.