Rage against the angst…
Rise beyond the pain…
Climb out of darkness…
Look for the light…
Fight for your life…
Seek to find hope…
Soar above the torment…
Storm through the misery…
Defeat unwelcome despair…
Denounce this disease…
Rage against the angst…
Rise beyond the pain…
Climb out of darkness…
Look for the light…
Fight for your life…
Seek to find hope…
Soar above the torment…
Storm through the misery…
Defeat unwelcome despair…
Denounce this disease…
Like a lot of people, when I was first diagnosed with sarcoidosis, I took to the internet. I needed to learn more about this strange disease. In my quest to find more information about it, I also found other people who have it through online support groups. In these groups, I came to understand the power of grace, the meaning of kindness and the joy of unconditional friendship.
When I was newly diagnosed, I was scared and confused and I had a lot of questions. People who were well experienced in living with this disease held my virtual hand as I began the relentless journey of life with a chronic illness. They patiently eased my anxiety about the unknown. They gently guided my attitude to a better place and they showed me overwhelming amounts of love and encouragement when I felt my lowest. Without them, I would have been utterly alone as I faced a life altering voyage into the world of the unwell.
As I’ve come to know my virtual sarcoidosis family, I’ve observed some pretty amazing things about them. They rarely complain and when they do, they always apologize for it. No matter what they feel or what they are going through, they will always make time for someone else in need. My virtual family is brave. They are fierce and they are proud. Having sarcoidosis does not stop them from striving to live their best lives.
My sarcoidosis family sets an example for me about the kind of person I want to be with this disease. I want to be strong. I want to stay positive. I want to keep my faith and I can do all of these things because my sarcoidosis family gives me the drive to remain focused on what is in my control, rather that what isn’t. I would not be doing as well as I am without the collective power of my virtual clan of sarcoidosis warriors!
We are a relatively small community. We have lost members and when we do, we grieve together. We cry for their families and share in their pain. Every time someone in our sarcoidosis family leaves us, we feel the hole they leave behind and their loss only makes us want to fight harder to find a cure.
Having sarcoidosis sucks. That’s just the way it is. It makes daily life difficult. It’s unpredictable. It hurts. It’s hard to breath and it is a challenge to think straight. When you live with chronic sarcoidosis, your world shrinks because you simply cannot keep up with the rest of it. It can be lonely and it is easy to feel abandoned by people you once thought were your friends. They don’t mean to leave you behind. They just don’t understand your experience and as a result, they drift away. For all these reasons, it is important to connect with those who do understand, who have walked in your shoes.
During Sarcoidosis Awareness Month, I want to take a moment to say thank you to this beautiful tribe of people who keep me from feeling abandoned and who inspire me to keep fighting. I’ve been formally diagnosed with this disease now for five years. My goal is to pay to forward. My hope is that I can be the comfort someone new to this disease needs, that I can bring them safely into the fold of the loving arms of this wonderful virtual family.
ZOEY ISABELLA – RIP – 11/6/02 to 12/22/16
(Preamble: Anyone who knows me or anyone who follows my blog, knows that my dogs are my world. On Thursday December 22nd, I lost my beautiful 14 year old Zoey to a sudden unexpected neurological event. Life is a funny thing…so out of our control. I am sure my blog will be filled with stories about her over the coming months…the things she taught and the joy she brought me. For now though…I grieve. Please bear with me.)
What can be said about grief that hasn’t already been said? That it is the last expression of love we have to give? Or that it is the end of one thing and the beginning of another? In time our memories keep love alive? These are not new ideas. There is nothing new that can be said about grief because grief is universal, an inescapable part of life. We all experience it throughout our lives in a myriad of ways and for countless reasons. Grief is ubiquitous. It is an ever present part of being alive. It is the ultimate consequence for loving unreservedly and is it relentless and unceasing. We learn to make it quiet, to put in the background after a time. It stays with us always though, because grief is the very last part of love. It is the hardest part of love. It is all we have left of what we have lost.
Grief is cumulative. The more we live and the more we are open to love, the more grief invades us, often in the most unexpected ways and at the most unexpected times. Grief plies up and with every new loss, old wounds re-emerge, forcing us to ache all over again, again and again. Grief has its own schedule. We are at its mercy and its mercy is not tender or kind. Grief is the hardest work there is to be done when it comes to the truest of love. If we fail to feel it, to acknowledge its power and purpose, to do what it required of us, we stay stuck in darkness and sorrow.
In the midst of grief it is hard to understand that the pain is meant to bring us to a new understanding of life, that on the other side of grieving there is gratitude. There is peace in the knowledge that grief means we accepted the full value and benefit of real intimacy into our lives. In a weird way, our lives are made richer in grief because it means we made a conscious decision to accept that with our deepest affection comes our greatest sorrows and that we were brave enough to take a chance on love despite the ever present risk of misery and heartache that grief makes known to us at the end of life.
There are no right or wrong ways to grieve. It is as individual as the love we lose to it and just as the love we lost, grief is eternal. It does not really ease with time, it simply changes with it. Every event that stirs grief up in our lives is different. Each situation that creates grief is unique but, the one true thing about grief is that it is essential to our understanding of life. Without grief we cannot know the complete and abiding joy of love and we won’t experience the pure beauty of our purpose. It really is better to have loved and lost than to never have loved at all. Life without grief is no life at all.
I have figured out what superpower I would want if I could have one and it’s not to be able to fly, or to be invisible or, to read minds. My superpower would not be to see through walls or to have crazy strength. I would not need a special car named after me or a cape and boots or a truth lasso. The superpower I want is unique and anyone who suffers with an otherwise invisible chronic, yet life altering illness, would probably agree. I want the power to force people who doubt how I feel or question me with skepticism to live inside my skin. A little time inside this body would prove to the naysayers that life with a chronic condition like sarcoidosis is no joke. Those who doubt us would then be obligated to admit that we are actually the stronger ones, that what we experience is real and that we are a people full of grace.
There is not one thing that is easy about living in a body that won’t cooperate. Even when many of us attempt to make it look like a walk in the park, it is more like a trudge though thigh high muck without the benefit of protective boots. Our desire for some visual sense of normalcy is for our own benefit though. If we act and look as if we are okay, maybe we can believe it too, even if for a little while. Why should we be relegated to PJs, sweatpants, and no make up 24/7. We have every right to look our best and to try to live as normally as we can but, just because we are doing this doesn’t mean we don’t suffer. We do. We suffer in ways most people cannot imagine and we often suffer quietly and alone. Ours is a misery we do not share and we do not dwell upon.
If we could put just one of the “Doubting Thomases” in our body for 24 hours, I suspect they would be shocked at how we work just to take a simple breath of precious life giving air. Every breath is a chore unto itself. Every inhale and every exhale is exhaustion for us. The other thing that would surprise a non-believer is the amount of constant pain we are in. Somedays it is low level pain, sure, but it is always there and like our shadow, it never leaves us. Some days it stops us cold. These are the days we hide from you. These are the days we grieve privately for the person we used to be, before life became about effort and lost its ease.
Doubters would be truly horrified to learn how long it takes us to heal. A mild cold can turn into something serious or even life threatening in a moment’s time. A cut or a bruise can take weeks if not months to go away. There is no telling how our bodies will react when sickness lurks or injuries befall us. It is astounding how vulnerable we are because of our sarcoidosis. It is also frightening because while we know living in a bubble is not realistic, living like nothing is wrong with our immune system isn’t either and finding a balance can be very difficult, sometimes lonely and occasionally overwhelming to figure out. While we might never say it out loud, everything we do, or don’t do, revolves around our best guess in how we think our bodies will react in any given situation. We are held hostage to our disease even when we pretend we are free.
Forced empathy. That’s the superpower I want. I would use it sparingly. Only on those who are knowingly critical or obviously skeptical. I wouldn’t make them suffer long, just long enough to learn the valuable lesson that you shouldn’t judge what you don’t understand or what you yourself have never experienced.
Attitudes, Awakenings, Awareness, Balance, Change, Choices, Chronic Disease, Courage, Faith, fear, Grace, Gratitude, hope, Inspiration, Joy, life, Pain, Peace, Sarcoidosis, Strength, Trust, Truth, Uncertainty, Understanding
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.
Acceptance, Attitudes, Awakenings, Awareness, Balance, Change, Choices, Chronic Disease, Courage, Grace, Gratitude, Growth, Happiness, Health, Healthy Choices, Healthy Living, hope, Inspiration, life, Peace, Sarcoidosis, Strength, Truth, Uncertainty, Understanding
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.
Acceptance, Attitudes, Awakenings, Awareness, Balance, Blessings, Choices, Courage, Friendship, Grace, Gratitude, Inspiration, life, Love, Openness, Perspective, Sarcoidosis, Strength, Truth, Willingness
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.
I’m finding that Facebook is full of a lot of pithy little advice, condensed counseling and succinct direction about how to live your life. I came across this little tidbit during my morning scroll through the endless noise of social media and it immediately made me think about my life with sarcoidosis and my daily decision to live and fight or give in and give up.
You see, sarcoidosis had taken much from me. It has taken my career, my energy and my strength. It has invaded my body with constant pain. It has dulled my once sharp mind and melted my quick wit. Sarcoidosis has turned my life into a daily battle of wills…my will versus its desire to destroy me. There are things this disease has taken from me that I will never get back. I know this and accept it but there are things this disease has also given me that I would not otherwise know or understand and, while I would not call this a “win win” proposition, as I’d much rather be a little ignorant and have a healthy body, I will say that I have learned to make the most of not only what I have left but what I have learned.
I haven’t lost the core of who I am. I may not be able to run as fast or remember every word I want to say but I am still me. I am still the person I’ve always been, at the heart of who I am…perhaps even a little better because of sarcoidosis. I know that I make some decisions differently now, not just about how to use my energy because it is limited but, also about how I want to be treated and how I treat others. I find that as I have to be a lot more patient with myself, I am with other as well. I am less judgmental than I used to be…less of a know it all and this actually makes me a happier person.
My mother used to say, “Would you rather be right or would you rather be happy because most of the time you cannot be both.” Before sarcoidosis, I thought I understood what this meant. Now I know that I actually had no idea. What I know now is that other people’s negativity, need to control and ignorance aren’t my problems. I don’t have to be the fixer or prove that I am the smartest person in the room because I have finally learned, thanks in part to being chronically ill, that the smartest person in the room is usually the quietest.
I find that I am also wiser with my time. We only have so much of it. I don’t want to waste it wallowing about what used to be or what isn’t anymore. Instead, I choose to cherish my husband, my home, my dogs, my world…albeit on a much smaller scale. I’m no longer driven, no longer striving, no longer reaching. Today, I know that truly living requires me to be present in this moment, right now. It’s hard to do that when you are always seeking the next “big” thing because life is not really about the “big” things. Most of the time, life is most enjoyed in the small quiet moments, often missed when “big” things are being coveted and mindless chased after.
Sarcoidosis is going to do what it is going to do to me physically. I can spend my energy and time in worry over that and over what it has already taken or, I can spend what is left of my time and energy making decisions and taking actions that seek to bring my life peaceful relief and joy, that seek to mend past regret, that are healing and hopeful and that bring me comfort. It really isn’t what happens to us that matters but how we decide to respond that makes all the difference. Things may have been taken from me because of my disease, but I still have a lot of life left to live and I intend to live it well no matter what might come my way. This is one thing no disaster or disease can take from me.
Acceptance, Anger, Attitudes, Awakenings, Awareness, Balance, Change, Choices, Chronic Disease, Courage, Disease Symptoms, Feelings, Honesty, life, Sarcoidosis, Strength, Truth, Uncertainty, Understanding
I don’t spend a lot of time wallowing in “what ifs”, nor do I allow fear to creep into my daily thinking but every once and awhile with this lousy disease something happens to me or to someone I know with this disease and I get really mad. I got mad today. Someone I know has been blinded by this disease, literally. Yes, sarcoidosis can cause blindness if it’s in your eyes. It can permanently damage any organ it touches and it leaves lasting consequences as a result of that damage too difficult to contemplate, too overwhelming to fathom, too outrageous to be believed. So from time to time, I don’t know what else to do besides get angry.
When I find out these things are happening to people I know, when I learn that someone has been blinded or is on the organ transplant list for lungs or, when some other horrific nightmare befalls the people I have come to care about with this disease, the reality of how monstrous it is hits hard. The reality of how little is actually known, researched or done to eradicate this disease infuriates me. The suffering, the sorrow, the confusion, the uncertainty, the loss that sarcoidosis reeks on the lives of those chronically affected by it can only be compared to what it must be like to fall out of an airplane with no parachute. There is no preparing for the disaster that is life with sarcoidosis.
By nature I am a positive person, perhaps in some odd way even more so now because this disaster is part of my life now too. It has taught me the true value of my time, how limited it is and what is most important. I cannot dwell on stupid arguments, when one day I know I might be lost to a complication from this dreadful disease. My reality now dictates that I be focused on the present, entirely engaged in living and, that I no longer be distracted by pettiness. I know how to get up when I fall with a smile on my face better than most people, thanks to living with a chronic condition. Once and awhile though, this disease angers me and this type of anger is not petty. It’s important. It is necessary. It is the fuel I sometimes need to keep fighting. People’s lives have been devastated, detoured and in some cases destroyed by this disease.
When you live with a disease like sarcoidosis, it is like living life on the edge of a cliff, every step you take could be the rock that falls, plunging you into utter darkness, no one to rescue you. It’s a precarious disease. Once you are diagnosed with it, there is no safety net, there is no way to know how hard it will strike or what it will take down as it blows like a hurricane through your body, leaving unrepairable wreckage in its wake. Sure, you can rebuild, but you’ll never be the same. This disease makes me angry sometimes and while I strive to be positive, I have also learned that we all need an anger allowance, a time to say…enough is enough, we’ve had it, we don’t want do do this anymore, we are sick of what has been taken from us. So, right now I am using my anger allowance. I am letting it out, releasing the valve so the pressure does not blow me up. The anger I feel now, is not just mine, it is for our entire chronic community, all those who suffer with sarcoidosis because we know how cruel life can be.
Under the surface, looking with purpose, you will notice with a focused eye, my sorrow. It’s hard to see, camouflaged by a smile, tucked behind the disguise of normalcy as I quietly work to manipulate a facade of good health, desperate to maintain life as I once knew it, life before sarcoidosis changed everything.
Once a foolishly confident person, naively joyful in my ignorant bliss of feeling well, I took my easy happiness for granted. How could I have known the train was about to derail? How could I have foreseen the way this disease was going to rob me blind, stealing not just my good health but also my peace of mind, my sense of order and control?
The ease by which I once lived has been taken from me. Sarcoidosis has made everything I do, think, say and feel more difficult. My body is pained, my mind mudded, thick and slow. I mourn the girl I used to be. She has been lost, forever altered… just another casualty of chronic disease. When you look beyond my highlighted hair, my designer outfit, my matching shoes and sun tanned face, you will see it, the brokenness, the grief, the heartache and the loss that consumes the hidden reality of my life.
It is always there, lurking just beyond the bounds of the monotony of my current existence, so much lost to this disease, so much taken. It’s not all of me but it is a very real part of me, of who I have become because of my disease. I don’t allow myself to be swept up in this sorrowful brokenness but from time to time, it seeps through the cracks in my well warn armor. There’s no denying it, that I’m tired from this war that I wage. The battle for normalcy is a daily fight. But, fight I must and fight I will because I’ve lost too much already and I cannot stand the thought of losing more.
So yes, if you look with a careful eye, you can see the sadness and the sorrow blanketed by my shear determination to regain some of that happy ease, some of that peaceful bliss. It will never be a naive joy again. It will never be innocent again because I am no longer gullible, unsuspecting and foolish in my quest for serenity. No, now I am a tired warrior but I understand the battle and despite the cracks, the soft spots and my leaking sorrow, I am strong and I will wage on.