A Different Kind Of Quest

Tags

Choices, Chronic Disease, Gratitude, Health, life, Meaning, Perspective, Purpose, Sarcoidosis, Truth

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.

This Is Not Political…It’s Personal.

Tags

Awakenings, Awareness, Chronic Conditions, Discrimination, Lies, Pre Existing Conditions, Prejudice, Relationships, Sarcoidosis, Truth

I sit here knowing I need to write this but I also sit here at a loss for words. Why I am still shocked when invidious things are said about people with chronic illness amazes me. It happens so often that I should be used to it by now but I’m not. I guess a good place to start is by saying that while some people will only be able to read this blog post as political, it’s not and, if you are reading it that way then you are missing the point entirely. That being said, I am going to reference comments made during the current healthcare debate in America but I’m going to do so through the lens of a person who has a pre-existing condition. I am going to talk about these comments because the rhetoric is simply astounding. It’s extraordinary in how it exemplifies the very stereotypes most of us with chronic illness fight against every single day and it must be exposed for its inaccuracy and discriminatory nature.

To provide context to what I am referring to let me share some recent words from American politicians about pre-existing conditions and people who have them:

Representative, Mo Brooks, of Alabama said that people who “live good lives don’t have to worry about pre-existing conditions” and that people without pre-existing conditions have “done things right.” Senator Ron Johnson of Wisconsin recently compared pre-existing conditions to car crashes and basically blamed people with pre-existing conditions for being sick and for being the cause of a collapsing healthcare system in this country. North Carolina Representative, Robert Pittinger, has said that if you can’t afford healthcare because of your pre-existing condition, you should just move elsewhere. The Speaker of the House, Paul Ryan, has said that the healthy should not have to pay for the sick. The current Vice President, Mike Pence, has said that the healthcare system should, in part, be changed based on “personal responsibility”.  

I share these thoughts from our government officials, not to scorn them for their politics and I honestly don’t care what party they belong to. I have no desire to debate the merits of Obamacare vs Trumpcare in this blog or anything else about the current state of healthcare in America. This blog is about shedding some serious light on the wedge that exists between the well and the chronically ill. When you take these comments and concepts on their face, outside the realm of politics, they speak volumes about the resentment the healthy feel for those of us with chronic conditions and sadly, this is nothing new for us. Those of us who have pre existing conditions and who suffer with chronic health issues have to navigate the complex world of living among well people’s judgements about our worth all the time.

Comments and concepts like these fall into a category all their own in the depth and breadth of the insensitive ignorance that many in the well world feel toward us. The lack of empathy in comments like these is profound, disturbing and quite frankly, morally reprehensible. To suggest that people with pre-existing conditions don’t live good lives is victim blaming and implies that anyone who is chronically ill deserves what they get because they brought it on themselves. Are there sometimes people who engage in unhealthy, high risk behavior that leads to poor health? Yes. Are there sometimes people who refuse to follow medical advice and are non-compliant with their medical care leading them to poor health? Yes. Is this the vast majority of people who live with a pre existing, chronic health condition? Not by a long shot.

I want to spend a little time on this particular concept…blaming the victim. Mr. Brooks didn’t say anything we aren’t already aware people feel about us but, the fact of the matter is, large numbers of us with chronic health issues didn’t do anything wrong at all. I happen to have sarcoidosis, a disease for which there is no known cause or cure, and it struck me down out of the blue forcing me to make lifestyle changes I loathed to make, like leaving a career that I loved. How can you seriously and with a straight face blame someone for contracting a disease for which there is no known cause? No one asks for or engages in behavior that will give them a disease like sarcoidosis or MS or lupus or epilepsy or muscular dystrophy or seizure disorders or narcolepsy….the list goes on.

Victim blaming is simply an easy out for many in the well community to put those of us with chronic health conditions on notice that we are getting what they think we deserve. This type of thinking actually bleeds right into the fabric of all the negative stereotypes about people with chronic illness, that we are lazy, that we don’t try hard enough, that we don’t belong, that we are just a suck on society, that we have little to offer and that we are not deserving of a good life because we brought disease upon ourselves. When you further examine comments that suggest we should just move elsewhere or we should take more “personal responsibility” or when we are compared to car accidents, then you really do begin to see the pattern of demoralizing prejudice that lurks in the minds of many of the well. Those of us with chronic health conditions, through no fault of our own, are unfairly and inaccurately seen as less worthy.

Stereotypes like these are not limited to the comments made by our political representatives. We come up against these types of attitudes every day. We should take better care of ourselves then we wouldn’t be sick is actually a very common theme among the well toward the chronically ill. We are often judged on the way we look. If we look good, then we can’t possibly be that sick. Conversely, if we are overweight or disheveled in some way, it’s assumed that we are lazy and have no self respect or self control. The well fail to calculate into their narrow minded judgement of us, that the medication we take for our illness can sometimes lead to weight management issues, massive fatigue and overwhelming feelings of malaise. Instead of taking the time to learn about our illnesses and what it’s like to live inside our bodies and deal with the hardships we face, the well make hurtful judgements about us based on what they see and not on what we actually experience.

It’s time for this level of vitriol toward the chronically ill and those with pre existing conditions to be exposed and for it to stop. It’s time for the well to show us some empathy and in case the well don’t know what empathy means, I’ll define it. Empathy is “the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner.” In other words, empathy is stopping long enough to put aside your judgement so that you demonstrate the ability to better understand and share in the feelings of someone walking a different path than you.

We don’t need the judgement of the well. We need the support of the well. We don’t need to be told what to do to take better care of ourselves, we already know. We simply need encouragement. We don’t want to be told to go elsewhere because we are a drain on the well. We want the well to see that we still have much to offer. We don’t want to be told that what is happening to us is of our own doing. We want the well to understand that we didn’t ask to be sick and that we don’t want to be sick. Our illnesses have robbed us of huge chunks of our lives. We don’t want the well to make assumptions that we don’t try hard enough. We try harder than the well will ever understand which is why we can’t win when we look too good to be sick…the judgement never ends.

I don’t spend much time caring what other people think of me anymore. I’ve gotten to the point in my life as a chronically ill person where I know that well people can’t truly understand my struggles, without experiencing them. I recognize that I was once ignorant too, before my sarcoidosis. That being said, I cannot in good conscience let publicly made comments by our political leaders go unchallenged because they have only said out loud what we already know, that the well judge us and do so harshly. While I may no longer care what other people think of me personally, I do care about my community. My community of people with pre existing conditions and chronic health issues don’t deserve to be treated as sub human, less than or unworthy and that’s why this is personal. When the well view us through that lens, then they don’t see WHO we are, they only see WHAT they think we are and they could not be more wrong.

 

As Real As It Gets…

Tags

Acceptance, Choices, fear, life, Reality, Sarcoidosis, Strength, Truth

I have to just say this, while it’s fresh on my mind, right now, this moment…I have to admit that living with a disease like sarcoidosis is hard. What makes it hard isn’t the physical pain, although it’s unpleasant, but the fear of what this disease is going to do next. Not every day is hard, not every moment is scary, but just generally, it’s difficult and sometimes overwhelmingly so. Often, I can shove it into the recesses of my mind, to will it out of the way, so that I can live as normal a life as possible. I’ve learned to cope in ways I usually take for granted, like budgeting my time and energy where I need it most and like tuning out constant annoyingly unpredictable levels of pain. I have learned to forget what was once normal, what healthy was. I’ve adjusted to a new way of living. I won’t call it a “new normal.” I hate that expression. There is nothing normal about life with a disease like sarcoidosis. There is nothing normal about gulping for air or arguing with yourself to accomplish simple tasks like folding laundry or grocery shopping.

Despite my built in denial system, there are times in my life when this disease smacks me in the face and reminds me that it’s real, it’s part of me and it’s not going anywhere. Times when I get sick or injured and it takes me eight million times longer to heal than someone who doesn’t have a disease like sarcoidosis is one example. Another, is when I fall down from dizziness because my pulse oxygen level drops into the “danger zone.” I find myself reminded that this disease is a stubborn shadow lurking in my life when my husband looks at me with pitiful eyes after I’ve been coughing and wheezing for several minutes or when I am too weak to stand or climb stairs on my own.

As hard as I try to keep the fear of what this disease can and probably is doing to my body at bay, as hard as I work to combat this disease and the side effects of all the stupid medication I take to manage the symptoms of it, the fear patiently loiters, like a peeping tom it watches me and waits and, even though I can often quiet the fear, push it into the depths of my core, it never really goes away. The fear remains with me always, like the hum of a fluorescent light bulb. My fear is really just one more symptom of this disease, one more thing I have had to learn to manage.

Once and awhile though, something happens to kick that fear into high gear and it doesn’t even have to be something that happens to me. It can be something that happens to someone else in my small community of friends and fellow soldiers who wage their own private hellish war against this mean monster of a disease. I am experiencing one of those “once and while” moments now. I found out just a few days ago that a friend of mine with this lousy disease had a double lung transplant. This news is both exciting and terrifying. I am thrilled her moment has finally come to try to get a second chance at a better life, of course. And, this is something she must do if she wants a fighting chance at being around for any length of time for her family and loved ones.

I find myself feeling both hopeful and enormously anxious, terrified really. This is major surgery and that’s always scary but, couple it with a chance of organ rejection and it’s spine tingling. At the same time, if all goes well, she will be free of supplemental oxygen. She will be able to breath on her own and she will reap the rewards of what could truly be a more normal life. Whatever happens next, the journey will be long and the healing slow. I will hope for the very best for her because she deserves it. She is an inspiration to a lot of us with this disease and her legacy always will be.

My feelings about her journey are also selfishly personal. Whenever I hear a story like this, it is an acute reminder of the reality of how dangerous this disease is. No matter how I run from it, sarcoidosis is always one beat away for catching up with me. Stories like this remind me that sometimes, sarcoidosis could not only catch up to me but it could overtake me and leave me with limited options. There are times sarcoidosis has already left me blooded and bruised, beat up and worn out. There are times sarcoidosis has already forced me to make very difficult health and lifestyle decisions. Sometimes sarcoidosis refuses to live in the background and when this happens…sarcoidosis is as real as it gets.

The fact of the matter is that this disease is always as real as it gets, even while I attempt to squash it down, to accept the humiliation it forces upon me with some modicum of dignity and, even as I make necessary lifestyle changes to accommodate it, sarcoidosis never takes a break from its desire to reek havoc on body or in my life. It never stops it’s quest to send me into madness. Sarcoidosis seeks to do me harm and regardless of my best efforts to ignore it, sarcoidosis isn’t going anywhere. Sarcoidosis is a reality and it is woven into the fabric of the story of my life…and it always will be.

Five Years Later…

Tags

Acceptance, Anniversaries, Attitudes, Faith, Gifts, Gratitude, life, Peace, Sarcoidosis, Struggle, Trust

Today marks an unusual and rather personal anniversary for me but, I’m choosing to share it because any time I can raise awareness about my disease, I feel obligated to do so. Five years ago today I underwent an open lung surgery to find out what was going on with my breathing and to determine once and for all if the images of my lungs were cancer or sarcoidosis or something else. I spent four nights in the hospital. My first and so far, (knocking on wood), only hospitalization for this disease. The diagnosis was sarcoidosis.

There are four stages for pulmonary sarcoidosis. I am stage four. Staging in pulmonary sarcoidosis is not like cancer staging, it does not necessarily predict prognosis. Staging in pulmonary sarcoidosis only determines what is seen by the physician in radiography. Stage four does mean that my lungs are scarred. I do have something called pulmonary fibrosis. I will be short of breath for the rest of my life because of it. I use inhalers to help me cope when my breathing is particularly difficult.

My life has changed a lot in five years. I could say that this disease has been the worst thing that has ever happened to me but it’s not. Even though this disease has changed my life in ways beyond measure and ways I would never have wanted or foreseen, it has also made me realize something fundamental about the importance of living in gratitude. I appreciate my life now in an almost primal way.

Having sarcoidosis has taught me the value of a simple life. I’ve let go of my need to strive and I am so much happier for it. Despite the physical hardships of my life with sarcoidosis, there is an easy joy to every day living for me now, that I did not have before I got sick and, it comes from a core understanding that control is an illusion. Once you lose your health, it puts all other things in new light.

Since my initial diagnosis, we have found the sarcoidosis in other organs and I have been on and off and on low doses of chemotherapy. There is no known cause and no known cure for sarcoidosis and treatment is really only used when the disease begins to impact quality of life or organ function. It has done both in my case.

So, I mark this anniversary with a bittersweet feeling. I hate this disease with a passion but I am equally passionate about what it has taught me about the value of living in peace and love and for the understanding that this very moment is the only one that truly matters.

23 Strange New Habits…

Tags

Acceptance, Awareness, Change, Chronic Disease, Habits, life, Sarcoidosis

I’ve developed some new habits since my sarcoidosis diagnosis, maybe others with chronic illness have too….I don’t know. I do know these habits, for better or worse help me cope. Here they are, in no particular order:

1. I put a blanket on my lap even when it is 80 degrees outside. I’m usually cold or at least chilled all the time now.
2. I can’t be outside anymore without sunglasses, even on dark days. My eyes are now incredibly sensitive to light.
3. I keep my house very clean. Not that I was a slob before my sarcoidosis, but now that I spend so much time at home, I find having a very orderly house gives me a feeling of control.
4. I’ve become more of a loner. I’m still a people person but being alone a lot now, I’ve learned to really enjoy my own company. When I am alone, I don’t have to pretend I feel better than I do. There is an ease and relief now in being on my own.
5. I read a lot more. I’ve always loved to read but before my diagnosis, I didn’t have a lot of time for it. Now that I don’t work, I find great comfort, good company and wonderful escape in reading.
6. I developed a habit for writing. I’m shocked that I started this blog and share all my “dirty laundry” but, writing is a release and it does help keep my mind active and my feelings sorted out.
7. I keep a daily gratitude list. I’ve always been a grateful person but there is something about losing your health that changes your outlook. You can either decide to appreciate life all the more, especially the little things or, you can feel tremendous self pity. I’d rather be grateful. I am purposely grateful now in a way I wasn’t before being diagnosed with sarcoidosis.
8. I take a lot more photographs. I find having visual memories to look at of happy and beautiful things, especially on bad days, helps my mood. I also enjoy photography as a hobby. Having hobbies you can manage is really important when you’re chronically ill. It provides a continued sense of self which could otherwise be lost.
9. I enjoy watching reruns of old Law and Order episodes. There’s something about the predictable structure of that show that brings me comfort.
10. I have conversations with my dog. My husband thinks I am becoming a crazy dog lady but my dog is my best friend. She never judges me and is always ready to provide comfort or distraction.
11. I spend more time on the internet now. I do this for a few reasons. One is my blog but, I also help administrate two sarcoidosis support groups online. I am also an admin on Facebook for an Old English Sheepdog group…surprise, surprise! I’ve actually met some truly fantastic people through the internet. I consider a few of them very good friends.
12. I enjoy cooking now. Sometimes I have to use a stool because my legs get too weak to stand for long periods, especially at the end of the day, but I love being in the kitchen these days. It’s not just a means to an end,  cooking has become a joy….probably because I have time to put some effort into it since I no longer work. My husband likes this new habit!
13. I experience anxiety before we travel for big trips. I never used to have this problem but, now when you take me out of the safety of my home and my routine, I never know what my body will do and that’s a little freaky. I used to love to travel too but now, it takes me a few days mentally just to prepare for it. The aftermath of a trip is also very hard on my body.
14. I like routine now…a lot!
15. I cry more easily than I used to and I HATE this. UGH! I was never much of a crier before. Now, I might just cry for no reason at all.
16. I don’t judge things I don’t understand anymore. I realize now that I have sarcoidosis, and I am often misunderstood, that there are things I can’t know.
17. I’ve become a morning person. I was never a morning person before my disease. I was much more a night owl. Now, mornings are when I have the most energy and can get the most done. Mornings have become my favorite part of the day because as the day goes on, my pain and fatigue catch up with me.
18. I think less. My mind is not as active but this is probably a good thing because I also worry less.
19. I don’t eat much anymore. While I do love cooking now,  I rarely have a big appetite and a lot of food has a weird metal taste to it. I would forget to eat entirely were it not for the fact that I have to feed my husband.
20. I drink a lot more water. I used to be horrible at staying hydrated. Now, I always have a tumbler of ice water near by.
21. I rub Vicks Vapor Rub on my legs when they ache. It helps take the knots out and eases some of the pain,
22. I can no longer sleep curled up on my right side. Ever since my open lung surgery, my entire right rib cage is messed up and a lot of times I have to take melatonin in order to get a really good restful sleep.
23. I don’t dwell on stupid stuff much anymore. I still have my moments but, mostly the stupid stuff that people say and do says more about them than it does about me and, I know this now in a way I didn’t before my sarcoidosis diagnosis.

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

Tags

Awareness, Blog, Chronic Disease, Education, Health, Perspective, Truth

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/

Routine…Can’t Live With It…Can’t Live Without It

Tags

Acceptance, Adjustments, Adventure, Change, Comfort, Disease Symptoms, life, Routine, Sarcoidosis, Truth

Routine is not a matter of comfort for people with sarcoidosis. Routine is a matter of survival. Those of us with chronic disease depend on routine to manage everything from physical pain to body numbing fatigue to the constant emotional upheaval of our pain and fatigue. Routine allows us to maintain some sense of normalcy, some modicum of sanity.

It’s not always fun living a life of routine. It can be rote, repetitive and often mindless. Routines are mechanical things. They create structure and but they also lack spontaneity. Routines are both a friend and an enemy to those of us with sarcoidosis. They bring order to a world that is otherwise left chaotic in a body that won’t work properly. They also cage us in that world, forcing us to live within very limited parameters. Routines shrink our world to a manageable size but they also restrict us. They cut us off from so much else that goes on around us and sometimes they make us fearful of what lies outside of them.

When we step out of our routines the consequences can be unpredictable. Sometimes very little changes except perhaps a slight increase in fatigue. Fatigue is one thing we can always count on. No matter what we do, fatigue is always present. Other times stepping outside our routine can bring on something as severe as a flare in our disease symptoms, sometimes bad enough for hospitalization. The route our disease goes, when we change our schedule is anyone’s guess.

Having routine a for those of us with sarcoidosis, or any other chronic difficult health issue, is necessary. It is how we function at our best in most situations. Learning to create these boundaries is one of the first coping skills we learn once we are saddled with illness. Routines bring us a feeling of security, of control, when everything else feels like wildly unpredictable.

Sometimes for our own sanity, we have to try to reach beyond those boundaries though. Part of the balance of living with a disease like sarcoidosis, is learning when to push and when not to push. Finding this balance is a constant challenge but if we stay too stuck in routine, we can forget that there is a big beautiful world beyond the lines we have created for ourselves and sometimes making an effort to be part of that world is as important to our overall health as routines are. There’s always a price to be paid for stepping outside of routines but sometimes we have to weigh the cost against the benefit of taking a chance and sometimes the benefit outweighs the cost. Being stuck in routines is tedious and, while they are necessary for our physical health, they sometimes impede our mental health. Sometimes, despite the risk, it is just as important to overcome the fears we have of leaving our routine to remember that we are not defined by them or by our disease.

A Solitary Fight

Tags

Change, Chronic Disease, Disease Symptoms, Grief, Loneliness, Loss, Sarcoidosis, Truth, Understanding

There comes a time with sarcoidosis, when you finally realize that you are truly, utterly and completely alone with your disease and, in that moment you feel like the very life is being sucked out of you, like someone ripped inside your chest and tore out your heart. That moment when you realize life with a chronic disease has finally taken everything from you, even your last bit of denial that the support of the ones closest to you will fortify you through this journey, is the loneliest moment in the history of all moments in your life. With gut wrenching power, it forever changes your understanding of the exact nature of the fight you are in. The war you wage is solitary, a duel between only two…you and your disease. It’s also the first time you realize that you might not have the resolve to win the battle.

No amount of support from outsiders can ever make them fully understand the depth of your experience and when they let you down, as they surely will, and the realization hits you that you cannot expect them to understand, you feel grief akin to death. It’s not their fault they don’t understand because no one can unless they experience it. You can’t blame them for their lack of understanding and you don’t but, you do still feel a deep sorrow in the knowledge that your disease has abandoned you forever from the rest of the world around you and the struggle before you looms with a greater sense of doom than ever before. Is there anything left to fight for?

Aloneness is a hard battle itself to wage but, to wage this feeling in a broken, beat up body and with a sense of shattered self worth because of your sarcoidosis, the aloneness takes on an entirely new meaning. Your level of vulnerability is palpable now in a way it never was before. Something has shifted, like an earthquake in your soul, as you realize that this new sense of aloneness is not really new. It was simply masked by your denial that it wasn’t really there and, by your misunderstanding that the support you do receive from the ones closest to you meant that they understood more than they actually do.

Once you have this moment, you have to figure out what you are going to do about it. How are you going to manage this new understanding of isolation and alienation? This is a question that cannot be answered easily but, in order to continue living your life, you must find a way to accept it. It begins with making peace with lowering your expectations of other people, especially those you held to such a high standard of understanding. In reality they walk beside you but since they can never be within you, they can never fully appreciate your physical pain, your emotional angst or the mental hurdles you jump just to make life seem somewhat normal.

Though the support of those closest to you will always mean a great deal and though this support is much needed to help ease the burdens you face, you must never again allow yourself to be fooled that this support is equivalent to understanding. What your loved ones feel is not empathy. It is not the ability to share your experience or to walk in your shoes. What your loved ones feel for you is sympathy. It is feeling of sorrow or pity for your situation. While easily confused because these are similar concepts, they are not the same.

In that moment when you are forced to face that pit in your stomach, when all denial is stripped and, the reality that this journey is fully solitary hits you, it is a devastating experience but, it is a required experience in dealing with and managing a life with sarcoidosis. No one will ever truly understanding the level of unease you are now obligated to live with, the quiet anxiety over the slightest change in your routine and how your body will manage it, the invisible and constant foreboding regarding what level of pain you are in, the nagging nearly undetectable worry over how you will best find the energy to manage a relentless feeling of fatigue and the mind numbing brain fog that makes daily decision making a never ending challenge.

This it.

You are now aware that you are on your own in the fight of your life.

Good luck!

Rage, Rise and Defeat Sarcoidosis!

Tags

Acceptance, Awareness, Faith, hope, Inspiration, Sarcoidosis, Strength, Struggle, Truth

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…

 

The Sarcoidosis Promise

Tags

Awakenings, Awareness, Choices, Growth, Happiness, Harmony, Kindness, life, Love, Pain, Sarcoidosis, Truth

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.