Five Things…

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Five things I wish I could go back and tell myself when I was newly diagnosed with sarcoidosis:

  1. Nothing is ever going to be “normal” again. You will lose your career and this will be devastating for awhile. Your life is going to change in ways you never imagined and this will be sad and scary. You will grieve. It will also be exciting and challenging and rewarding because you will learn that you never give up. You will figure out how to make the best of it. You will learn to develop your artistic side. You will write a blog, learn to draw and paint. Nature photography will become a newly found passion and you will be good at it. Despite this disease, life is still a worthwhile experience and, in some ways, it becomes more rewarding now because you are sick. You will learn to cherish what matters most and let go of what doesn’t. You will learn to live with dignity despite the fact that this disease continues to attack your physical wellbeing.
  2. Learn all that you can about sarcoidosis and do not be afraid to know more than your doctors because you will know more than most of them. Question them if they say something that doesn’t make sense to you. Be a strong advocate for yourself. You deserve good care and the only way to get it is to be an informed patient. Take an active role in your healthcare and look at your relationship with your doctors as a partnership instead of a doctor/patient relationship. Make informed decisions about your treatment and include those closest to you in those decisions.
  3. Finding an inner strength will be the key, not only to surviving life with sarcoidosis, it will be how you learn to thrive. It is in you. Strength is found in many forms. It is a positive attitude. It is being okay with being afraid while still doing what must be done. It can be found in tears. You will need to dig deeper inside your soul than you ever have before and with brutal honesty, you will need to accept that you are changed both physically and mentally. This is how you are going to move on with your life. It will be a process that is painful but rewarding. You will come to know yourself profoundly better than you did before you got sick and you will learn to trust yourself completely. This trust will help you improve your relationships with others. It will also help you let go of those who refuse to acknowledge your journey.
  4. Take exceptionally good care of yourself physically and emotionally because doing this is better for you than any prescribed treatment. No one else is going to put your needs first. You have to learn to do this for yourself and you have learn that you are worth it. Learn to set boundaries about where to put your energy and do not feel the least bit guilty about it. Eat a healthy diet, get enough sleep, reduce stress and get regular exercise. Don’t make excuses not to because, in the long run, it will these things that keep you as healthy as you can be. Practice the art of daily gratitude because you will come to understand your own attitude plays a major role in the quality of your life. Life in a body ravaged by sarcoidosis is not easy but you will find peace and you will be happy again.
  5. Life with a chronic health issue like sarcoidosis is a marathon. It is important to pace yourself. You won’t have the energy you used to have. Your mind won’t work the way it used to and no matter how well you take care of yourself, you will be physically weaker than you think you should be. You will be in some level of pain constantly. You will need to learn to prioritize your responsibilities, your relationships and your time because your energy will be limited and your pain unpredictable. Sleep doesn’t fix your fatigue and it will be necessary to say “no” to some activities. You will feel guilty but you shouldn’t. You will be alone more and you will have to learn to appreciate the company you keep with yourself. Every day will be different so when you have a bad day, know that the next will likely be better. When you have a good day…rejoice! You are not going to get better. Sarcoidosis has changed your reality forever. It’s up to you to figure out how to make the most of this new strange world and you will. You will learn and grow in ways that are profoundly important to living a truly good life.
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No Funeral For The “Dead”

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Living with a chronic illness like sarcoidosis changes your life in unimaginable ways. You never think something like this will happen to you…until it does. Life inside an unreliable body forces you to live quite differently than you had once thought you would live. It changes your relationships. It changes your career goals. It makes your thinking foggy, slow and dull. It steals your energy and turns you inward. You are physically unable to do things you once thrived doing. You spend more time alone than you ever thought you would. You no longer recognize yourself. You have to be introduced to this new person and you’re not sure you like her at all.

This is what life with a chronic illness is like, especially in the beginning. Everything changes. It’s as if someone beamed you out of the world you know and put you on a planet you’ve never seen before. You don’t know how to find anything and everyone is speaking a foreign language. It’s confusing and forsaken and sometimes downright terrifying. Everything you once knew about yourself changes. You change….in body and mind. You must say goodbye to your old life, your old body and your old self. It feels as if a funeral is in order. But, you don’t get to have a funeral for your old self. You have to grieve quietly because even though you are now saddled with all the life changes that come with a chronic disease, other people don’t notice, don’t care or just don’t understand. It’s a solitary journey and a long goodbye to the life you thought you would have and the life you had planned for yourself.

Grieving is a very big part of living with a chronic illness and while harder in the beginning, it remains a lifelong endeavor. You go through many emotions and you follow the stages of grief as you step further into your new and unfamiliar world. You experience denial. This can’t be happening to you. You ignore your symptoms and the advice of your doctors. You might even skip or cancel doctor appointments. You tell yourself it won’t be that bad, that your life isn’t going to change. As your life does change, because it will change, you start to experience anger. It will change because you are physically unable to keep up, because the well people in your life start treating you differently, because you can’t think as fast as you once could, because you are simply unable to manage life the same way. Simple every day tasks like climbing a staircase or taking a shower require you to rest. You wonder why this is happening to you. You don’t think it is fair that you should be losing so much while other people thrive. Then you panic and start to bargain. You make promises to “do better”, to keep those doctor appointments, to be a nicer person if this would all just stop, to give up a bad habit if it would make this all go away. None of your efforts to trade work and so depression sinks in and this is a long stage.

The stage of depression is really when the reality of your circumstances sink in. You start to realize that this is a forever situation. You come to understand at your core, that your body isn’t going to work correctly anymore, that your brain betrays you with loss and confusion, that your energy and strength have been striped and you are now raw and weak and sad. You feel pathetic. You even hate yourself a little bit. You are resentful and bitter and cannot see a way out of this new and unforgiving world you have been plopped down into. There is no light and no hope because there is no going back to the way things used to be. It’s time to say a final goodbye.

Saying goodbye to who you used to be is the only way to figure who you are going to become but, it’s not easy. Acceptance, the final stage of your grief process, is not a simple task. It comes slowly at first. You realize that if you don’t let go of the past, it’s darkness will swallow you and you will drown in the deep sorrow you feel for what used to be. If you want to survive, you know you cannot do this. You must undertake the long process of saying farewell to your old world, your old body and your old life. It takes courage to say goodbye but as you do, you realize that this is very much like the loss of a loved one. You cannot control that this person is gone so you say goodbye, in your own way and in your own time but you say goodbye so that you too don’t die.

While there is no funeral for this kind of death, you experience your own way of parting from who you used to be. No one else is invited. It’s an extended goodbye and a very private affair. As you go through this process, it becomes bittersweet. You let go piece by piece and bit by bit but as you do, this new world you’ve been forced to live in starts to take shape and it begins to brighten. You start finding your way around. You’re not as lost as you used to be. You realize with that with acceptance, you might be able to build a new life, not the life you thought you’d have, but a life none the less and eventually hope returns.

Living with a chronic illness like sarcoidosis changes your life in unimaginable ways. It’s hard to live with a physically restricting, nearly invisible to the outsider, life long, pervasive, unyielding disease. There will always be fear. There will always be times of sadness. There will always be uncertainty. There will always be those who don’t understand. There will always be moments of loneliness. There will always be doubt. There is no way around these inevitabilities of this new life. They are part of your new world but once you begin to say goodbye to your old life and your old self, once you begin to accept your new reality, you begin to realize that it’s time to rebuild, to redefine who you are and to learn to love this new person emerging. You start to find value and purpose in new places and you start to live again.

Art Lessons

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I’m deeply grateful to the readers of my blog who have recently reached out to me, asking if I’m okay and where I have been. It’s nice to be missed and that my writing is appreciated. I’ve not been away for bad reasons. I’m okay, still fighting the daily ups and downs of this terrible disease, sarcoidosis…but I’m okay.

Taking a bit of time away wasn’t something I planned, it just sort of happened. I love writing and I have missed it but, I’ve recently found another new avenue to express my creative muscles. For some reason, unknown to even me, I got it in my head that I wanted to learn to draw, to become artistic in a new way. That’s where I’ve been. That’s what I’ve been spending a lot of my time doing. Learning to draw takes me out of myself which is why I think I like it so much, even though I’m not very good at it. Creating art has a way of transporting me to a place far outside myself, giving me a new outlet for escape.

Interestingly enough, art has also been teaching me a lot about life…things I probably already knew but forgot or things I needed to be reminded of and even some new things about the importance of patience and time. So, since this is what I’ve been up to and readers have wondered where I’ve been, I thought I’d share some of things I am learning through art because they also apply to life in general and certainly to life with a chronic illness.

Lesson #1: 

Enjoy the journey – This is one lesson that isn’t entirely new to me but it is a lesson that comes up as a theme in my life over and over again. Apparently, I am not a patient person. I have found with art that the process of creation is just as important, if not more so, than the finished product. I have also found that I tend to rush the process and that every time I do, the result is never as good as it is when I take my time and try to enjoy creating something. Joy comes when we are aware of our surroundings and embrace what is, instead of what was or what will be. The same is true when you are creating a new piece of art. When I am paying attention to each stroke of the pencil instead of focusing on the outcome, I make less mistakes, I actually have fun and the creative juices start to flow. This is a real life lesson. Living in the present, the here and right now, makes it easier to appreciate otherwise mundane moments and opens my heart in gratefulness for the life that I have now even if sarcoidosis had turned into a life I never planned on.

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Lesson #2: 

Problem Solving – This is something I am usually pretty good at but with art, it has been a struggle. Sketching is a new skill and I use the term “skill” loosely here as it applies to my artistic abilities but, there are times when you are creating something that you have to stop and think, at least that’s the case for me. Sometimes my brain doesn’t cooperate with my hand. I have a vision for how I want the drawing to look but dexterity betrays me. This is when I have to stop, take a step back and think about how to approach the drawing differently so that I can turn my vision into a real creation. Living my life with a chronic illness is much the same. There are times my body won’t do what my brain wants and yet, I still have to live my life and figure out how to function. Learning to draw has been a good reminder that there is always another way to figure how achieve my goals and accomplish what I set out to do.

Lesson #3: 

Mistakes can be a good thing – If you’re like me, you hate making mistakes. I’ve actually never heard anyone say they like them. Some people are more patient with themselves and others when mistakes occur but I’m not one of those people. I am more patient with other people’s mistakes than I am with my own but generally speaking, this is an area of my life that needs improvement. I was taking an art tutorial online the other day and the instructor said, “Mistakes are important in art because every mistake teaches you something new about your craft and your process.” I paused the tutorial and write that one down.  I’ve always understood mistakes teach us things, how not to be, but it never dawned on me that they also teach us how we want to be. Without the benefit of trial and error, we don’t learn. Brain fog and fatigue alone are enough to make me forget stuff and that puts me in a position to make plenty of mistakes. I now see mistakes differently. When my disease makes me do stupid things because of pain or shortness or breath, I will simply try to embrace them, understand them and instead of beating myself up, I will strive to do things differently. Mistakes are opportunities for personal growth.

Lesson #4: 

There is no such thing as bad art – If you like what you are creating, then it’s worthwhile. This is something art is teaching me that’s fairly new in my thinking and also applies to my life now that I live with a chronic illness. It is said that beauty is in the eye of the beholder and art is meant to be beautiful. What is beautiful to one person may not be to another. That’s okay. So, as long as I like what I am creating, it is meaningful because it is effort well spent. My life with sarcoidosis has changed in ways I never could have imagined and I have struggled to find meaning in it since I left my career and became a stay at home “dog mom.” I was defined by my career in ways that were woven into me. All that changed when my body and my brain decided it had other plans for me, plans I did not agree to. So, I’ve had to create a new life for myself and it is a constant battle for me to accept this change but, art has given me a new outlook. I am creating something new in life and, so long as I can find things about each day that are worthwhile, I can be happy with what I am creating, despite all of the things sarcoidosis has stolen from me. There is no such thing as a bad life, so long as it is lived with gratitude, peace and a little creative thinking.

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So my dear readers, this is where I’ve been and this is what I’ve been up to. I’m sorry that I was away so long. I guess I needed a break that even I didn’t know I needed. I needed to do something new and challenge myself differently so that I could broaden my thinking about what this life with sarcoidosis is all about and, how it impacts every part of who I am and what I do. It always will, it’s like a constant companion now, one I have had to learn to live with even though I haven’t wanted to. Thanks to my new artistic endeavors though, I have learned more about myself and how to cope with life in a body that has a mind of its own. I hope my “art lessons” have been as helpful to you as they have been to me and I’m sure I’ll be back with more of them as this new chapter in my life unfolds.

 

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. 

 

Life, Love And The Pursuit Of Air

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The fuel of life…

Breath producing vigor…

Our nourishment for being…

Sustenance and provision for growth…

An invisible gaseous gift…

A mixture of oxygen and nitrogen…

Air filled lungs…

Inhaling and expanding…

Exhaling and contracting…

A privilege…

Not a right…

Beautiful cherished respiration…

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.

“Bloom Where You’re Planted” And All That…

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Today a friend my mine posted a lovely picture from her garden on Facebook with the caption, “Bloom where you’re planted…” I immediately thought…”what a great idea for a blog post.” So, thanks Cheryl.

Anyway, this idea of blooming where you are planted is an interesting one when you have a chronic illness because, you actually just feel like you are suffocating among the weeds of all your nagging, nasty, mean, ugly symptoms. I realized after reading this quote today that it’s up to me to weed my garden, to tend to my needs, to grow despite the weight of it all.

With sarcoidosis, what does weeding my garden mean? Well, it means changing bad habits and making healthier choices. It means clearing away unnecessary stress. It means changing my diet. It means getting enough sleep. It means regular daily exercise. It requires tenacity and vigilance and persistence because the weeds in my garden grow quickly and without mercy, attempting to snuff out all beauty and color in my life.

Tending to my needs means finding good healthcare professionals who understand my disease and listening to them. It means learning to be a good advocate for myself. It means figuring out how to live a peaceful life. It means letting go of what doesn’t matter. It means striving to be happy regardless of my losses. It means learning to say no without guilt. It means listening to what my body is trying to tell me. It required disciple because self care feels selfish but learning to care for myself is really the only true way that I can then care for anyone else.

Despite all that my disease has done to me and taken from me, I really do try to bloom right where I am, in the thick of its choking weeds. I rarely stop to give myself credit for how hard I have worked at accepting this life and making the most of it. The choice is really mine to make. I can be stifled or I can reach for the sun. I may not have asked for this to happen to me but I am rising to the challenge and I haven’t withered yet. I think I really have bloomed where this disease planted me and that is a beautiful thought.