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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A Touchy Subject…

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I’m going to put a new twist on a touchy subject for those of us who have sarcoidosis and other invisible illnesses because, over the years that I have now had sarcoidosis, it’s something I have come to see very differently since I was first diagnosed.

One of the things I often hear people with sarcoidosis say, is how much they hate it when people tell them how good they look. I get it. I used to hate it too. It can feel like our experience, like the veiled war our body is waging against us, is being discounted. We already experience enough ignorance from the medical community we are forced to deal with, that any additional belittling of what we go through, simply feels like a deeper injustice. Depending on the tone, sometimes when people tell us that we don’t look sick, there is a hint of judgement and we are made to feel like liars. We are NOT liars!

All of that being said, I have come to view this comment and ones like it in a new light now that I’ve had this disease for quite some time. I have learned to not only accept the confusion “the well” feel toward me, I have come to better understand the part I play in that confusion. I really don’t look sick. I don’t look sick, in part, because I choose not to look sick. I work hard at it too. I take care of myself…physically and emotionally. Doing this means that I am not going to “look” however it is a sick person is supposed to “look”. In the face of unyielding physical discomfort from a disease that robs me of air and leaves me feeling like a wrung out dish rag, it really would be easier to let myself “look” sick, to not make the effort to get up and get dressed. I can’t deny that there are days when my bed does call my name and the thought of staying un-showered and in my PJs all day is tempting. Part of surviving this disease, at least for me, is to resist that call as much as I can!

I regularly exercise too. I appear to be in good shape and, I am in good shape for someone with this disease! I get dressed in clean and stylish clothes almost every day even though I sometimes have nowhere in particular to go. I wear make up. I get my hair done. I smile a lot and I try to find some joy in every day, despite how much physical pain I might be in. I don’t spend a lot of time talking about my symptoms. I try not to dwell on how badly I ache. I quietly live with my sarcoidosis because it is simply part of me now. I don’t try to hide my disease on purpose…exactly. I want to look good for myself. I want to live my life as normally as I can, despite whatever this disease is doing to my insides. Part of doing that is looking as good as I can. It’s what I would do sick or not. It’s about self respect for me, about still trying to like myself even though sarcoidosis tries to trick me into thinking I am worthless.

So, when I am putting all this effort into looking like what others would call “normal”, how can I actually be mad at them when that’s what they see? I can’t. It’s also a waste of energy. I find being frustrated by the understandable ignorance of those who have not suffered with the troubles, pains and fears of living with in invisible illness, is a useless endeavor. Now when someone tells me that I don’t look sick, I take it as a complement. It means the effort I am putting into trying to live normally might actually be working! I thank them and I mean it. But, I also take it as an opportunity to educate. I politely explain that looks can be deceiving. I find that when I do this, without anger or bitterness, people are interested and because they are interested, I leave them educated instead of annoyed with me for getting defensive and, maybe…just maybe…they will think twice before judging someone’s insides based on what they see on the outside.

I like that I get told that I don’t look sick. I like that I am able to carve out some normalcy in my life. This is just one way that I do that. In full disclosure and in all honestly, I must admit that before I was diagnosed with sarcoidosis and, before my insides decided to take a stab at me, I too had no idea what those with invisible illness go through. I was ignorant and I no doubt, said things, without intending to cause harm, that probably did hurt people engaged this very private struggle. So, before I get angry with people who tell me that I don’t look sick, it has helped me to remember my own ignorance and the innocence in it. I meant no harm…I just didn’t know any better. It also helps me be honest about the fact that I play a role in the confusion others might feel about my being sick. I really don’t look the part because I don’t want to look the part. I don’t want to be sick…so…I’m glad I don’t look on the outside, the way I feel on the inside. How ugly I would be! For me, this is one small battle I feel I’ve won! For me, being told that I don’t look sick is now cause for celebration instead of anger.

A Sarcoidosis Prayer

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Bring safety to the vulnerable

Bring courage to the fearful

Bring strength to the weak

Bring serenity to the troubled

Bring clarity to the confused

Bring peace to the anxious 

Bring joy to the unfortunate 

Bring energy to the fatigued 

Bring comfort to the pained 

Bring education to the healers 

The Dangers Of The Outside World

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

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

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

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

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

Hear This…

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Hear me when I say that your unhappiness is not my problem. Hear me when I tell you that as hard as you try to bring me down, I won’t fall. Hear me when I say that you can scratch and claw at me all you want but, you will never hurt me. Hear this loud and clear and once and for all, I will not join your unyeilding pity party. I would rather stand on my own in the sun than be in the company of your constant misery.

Hear me when I say that my struggles with sarcoidosis are real. I wrestle with the same hardships of living with chronic illness as you do. I just refuse to wallow in it. Hear me when I tell you that my happiness isn’t about you. If you are offended by my happiness that only means you’re jealous of my serenity and that ain’t my problem. Hear me when I say that your judgement of my decision to live a joyful life despite my illness, says more about you than it does about me. Your spite makes you sicker but it doesn’t do a thing to me.

Hear me when I tell you that I’ve become immune to your constant criticism of my continued enthusiasm to live a peaceful life. If you don’t want to see what is still good in your life because you got sick, go do it somewhere else. I can’t afford to expend what precious little energy I have on your relentless negativity. Hear me when I say no one with this disease has it easy and hear me when I say that it’s not a competition.

Hear me when I say that it’s not always easy to choose happiness but it’s still a choice. Hear me when I say that there is a difference between grieving the losses of life with a chronic illness and reveling in suffering and anguish. Hear me when I say that I understand all too well the pain, both physical and emotional, that chronic disease heaps upon us because I feel it. I feel it one way or another every day. Hear me though, when I tell you that despite this pain, I make a choice every day to look beyond this darkness and seek the light.

Hear me when I say that my gratitude for my life, no matter what befalls me, is how I cope. If you want to linger in your despondency be my guest but, I will not join you there no matter how hard you pull at me. If that’s the place you feel most comfortable then by all means stay there in that place but, stop trying to take me there with you. Hear me when I say that I won’t go.

A Holiday Gift For You…Things My Mother Taught Me

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My mother has been gone for over twelve year. I have a lot of special memories of her and I am often flooded by them around the holidays. She loved holidays because it brought family together and she was the glue that held us close. She taught me a lot about life, that it’s good and that it’s difficult. In my mother’s case, a lot of what I learned from her was through example. She carried herself with a quiet dignity, a humility and beauty that evades most people. I think I miss that about her most of all. I have known no greater person than my mother. Her advice and example have served me well through my life and while I know I will never match her grace, it’s something to keep striving for. As my gift to you this holiday season, I will share some of the best advice she ever gave me:

The day doesn’t start until your bed is made 

You can be happy or you can right but most of the time you can’t be both 

Eat a salad 

Aliens exist 

Find something to laugh about every day 

Strength is not boastful

Learn new things all the time 

Vote…in every election no matter how big or small

Looking good is important because it makes you feel good about yourself

Never kick a dead cat (Translation: Don’t go back to something once it’s over) 

Stay current with news…and with the latest styles

Revenge is a dish best tasted cold 

Follow the rules

If you don’t take care of your own health…No one else will do it for you

Be independent and self sufficient (Translation: Don’t ever “need” a man) 

If you marry…don’t just love him…like him too

Don’t dwell, learn from your mistakes and, move on

Arrogance is ugly

Don’t use fear as an excuse to stay stuck

Daily gratitude is the key to a peaceful life

Find ways to express your creativity 

Opinions are cheap…everyone’s got one

If you can read…you can cook

Take a look around and don’t take what you have for granted

You can re-invent your life if you don’t like where it is headed

Try to always be truthful and if you can’t be truthful…don’t talk

Pop music is awful

Explanations are one thing and excuses are quite another

Have hobbies…lots and lots of hobbies

Don’t talk outside of the family (Translation: Don’t gossip about your family with outsiders) 

You don’t have to express every thought in your head

It’s called work for a reason…It’s not supposed to be fun

Just keep putting one foot in front of the other

The Answer

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Acceptance only comes after awareness.

Acceptance is acknowledging what can’t be changed. 

Acceptance doesn’t mean liking something. 

Acceptance changes perspective.  

Acceptance is not resignation. 

Acceptance brings peace. 

Acceptance and attitude go hand in hand. 

Acceptance creates opportunities for growth. 

Acceptance requires tolerance. 

Acceptance is humbling. 

Acceptance is a process. 

Acceptance only happens with patience. 

Acceptance is an act of self-restraint. 

Acceptance is relinquishing control. 

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.

Grief Lessons From A Dog’s Life

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A year ago this month I lost my heart dog, my soul mate with a fur coat, my four legged best friend. It’s been a challenging year of grief for me and with every passing day of her absence, I feel Zoey’s physical presence slipping away from me while memories of her continue to flow through my mind like water rolling down hill. In this past year the thought of Zoey is laced into most of my daily thoughts. There are reminders of her life all over my house. I see her sitting on the hill in the backyard and yet she’s not really there. I still step over her when I get out of the shower but she’s not there. At night when it’s time for sleep, I still listen for her snoring but I can’t hear it anymore. I can’t help but think of her when I spend time with my other dog, Abby. They were best friends. Abby misses her too. I miss them together.

Zoey was a beautiful animal. She had a long flowing fur coat and eyes that would melt the heart of even the iciest soul. She had a way about her that made you fall in love with her even if you’re not a dog person. There was a kindness in her that all humans could learn from. For over fourteen years, Zoey was a constant presence in my life and she was there for some pretty major life events…both good and bad. When I was happy, she shared in my joy and when I was sad, she comforted me. She knew me better than most people know me and I trusted her more than I trust a lot of people.

Throughout her life, Zoey had a way of teaching me things. She taught me patience when she was a puppy. Boy she was a biter…especially when she was teething. She taught me how to love unconditionally because there was never a time I got mad at her even when she did stupid things all dogs do. Zoey taught me about living in the moment. Even as she aged and mobility was more difficult, she still loved her walks and she stopped to sniff every mailbox. She never stopped playing. Even on her last day, I have pictures of her outside playing with Abby. She loved life to the very end and this is her legacy. This is perhaps the single greatest lesson she left for me. Cherish life because one day you won’t be here anymore. Love those around you as deeply and freely as you can and always be happy.

Zoey’s death and this past year without her have also taught me about the process of grieving. Grief allows us to say goodbye but more importantly, it allows us to honor those we have lost simply by remembering them. Grief is personal and while no two people do it exactly the same way, it is something we all must go through, if we are to experience love in our lives. If you don’t grieve, you haven’t loved.

I’ve also learned that grief is sneaky. You can feel it even when you don’t think you are! Something seemingly out of the blue reminds you of the loss and bam, suddenly you are filled with unexpected gut wrenching, soul crushing sorrow. I used to hate it when this would happen but now I have learned to accept it. I don’t like it but I know now that it simply means I was actually lucky. I was lucky to have had love so strong in my life that the absence of it cuts though me sometimes. I have learned that in order to have meaningful relationships, with humans or with dogs, you have to allow yourself be vulnerable enough to accept this kind of pain and if you don’t, it means you are holding a part of yourself back. You are missing out on the entirety of love’s purpose, of its gift and all that it has to offer.

Zoey’s physical absence is hard to cope with but the memory of her, the lessons she left me with, stay with me. When I act on these lessons, when I allow myself to love openly and without hesitation, when I seek the true beauty in every day joys otherwise taken for granted, when I put my faith in love and allow myself to experience all of its tender mercy and its inevitable heartache, then I am honoring Zoey’s memory because I become a living example of these lessons. This allows a part of her to stay alive in me. I can’t think there will ever be a day that I stop missing Zoey but, as time goes by, the pain of her loss slowly turns into gratitude for her life. I was lucky. I was blessed to have had the love of a creature as beautiful as my precious Zoey and for all the lessons her love taught me about how best to live my life. I will continue to honor Zoey’s memory and the life that she lived by trying to love and live well with joy and an open heart. It’s what she would want me to do.

Don’t Hate Me Because I’m Happy…

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If there is something chronic disease has taught me over the years, it is that happiness is a choice. Sure, that might sound “cheesy” but it’s not, far from it, in fact. Learning to be happy in the face of constant pain and an uncertain future, learning to be happy when you have been forced to make yourself financially dependent on family, learning to be happy when every breath of air is a struggle, learning to live in constant fear, learning to let go of your career…is not easy. It’s a skill.

Recently someone else with sarcoidosis had a very powerful and alarmingly negative reaction to my suggestion that when we are stressed, it’s a good to “step back, inhale and laugh.” That when we are stressed we should remember that we are never given more than we can handle. She said, “I have lived with a positive attitude, glass is full of golden apple juice, jada jada. It is just more serious than a bunch of platitudes. Coping skills are built with time and character, not a bunch of cheesy sayings.” Being reminded to step back from stress is not “cheesy” and it is not a “platitude.” Remembering to step back during stressful times, in difficult situations and have a bit of a sense of humor, is in fact, a coping skill and a good one. It’s also one that takes time to develop and it is one of many ways to build character.

Whenever I am taunted by someone for being generally happy or for trying to face my problems with a positive attitude, I find it sad. I feel pity for people who choose to be victims. I have been accused of being a pollyanna when it comes to this disease. This is not true. There are no reasons that I can think to be “excessively happy” about life with chronic sarcoidosis and, this disease has taken plenty from me, just as it has anyone else who lives with it. I simply refuse to dwell. I also use my finely tuned, well developed coping skills to find answers to my problems, and perhaps most importantly, I don’t judges others for where they might be in this horrible journey we are all forced to travel.

Give anyone with this disease a chance to tell their story and you’ll be in tears in no time. This disease is a thief. It robs us all of physical comfort, emotional stability, financial security and quality of life. Not a single person with chronic sarcoidosis goes unscathed. We are all scarred. Our scars might be different but none of us escapes its wrath. So, when someone gets pissed off at me for sharing how I cope with stress, for believing that I can handle what this disease throws at me, for having enough faith to know that this is true, for using good humor in difficult times, for knowing that when I change my perspective, it changes everything, I can’t help but be taken aback. It means I am being judged by someone else who is suffering a similar fate.

It is pathetic to be judged by a fellow soldier in the fight against the trials of life with sarcoidosis but, it happens and, it has happened to me more than once. I’ve been told that I don’t know true suffering because I am not completely alone with this disease. I have been told that I don’t know true suffering because I don’t struggle financially because of this disease. These are judgements people have made of me, without facts. These are judgements people have no right to make and yet…

People also don’t really have the right to judge how I choose to look at my life since getting sick with sarcoidosis but some do and, some do so with an angry heart. I have scars. I have simply learned to live with them. I have pain but I have learned to cope with it. I struggle just like everyone else but, I have learned to make happiness a priority in my life and, I actually have this disease to thank for that. I make it a practice to be grateful, just like brushing my teeth every day, regular exercise and eating healthy. I know what my scars are and I know what they have done to me and what they teach me. I’ve learned to cope and by learning to cope, I’ve learned to be happy.