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

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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.

This Is Not Political…It’s Personal.

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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.

 

My Sarcoidosis Family

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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.

 

The Irrevocable Bond Of A Guardian Angel

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

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

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

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

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

Fourteen Years Of Love and Joy…Happy Birthday Zoey!

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We first met her on a snowy and cold winter’s day in December of 2002. I don’t remember the exact date but I do remember that she was an hour’s drive from us and that the entire ride was filled with the same anticipation as a kid on Christmas morning. It was all my husband could do to keep within the speed limit.

Upon our arrival, we were greeted by nine little brown eyed, fuzzy haired black and white faces, all smelling of pee, heads tilted this way and that. One little white head stood up and nearly climbed out of their collective puppy pen to great us. I fell in love immediately but this was not Zoey and despite my heart being tugged, we were on a mission to meet Zoey.

A few weeks prior to our meet and greet with these new little lumps of fur, we had received a picture of all nine of them. My husband immediately spotted Zoey, even with her mousy not yet fully formed dog face and he fell in love. He cropped her face out of that picture, blew it up and sent it to me in an email at work with a caption that read…”This one looks like trouble.” He was doomed. He knew she was the one. So, on that wonderful day thirteen years ago, when we meet these little monsters for the first time, my husband had to find Zoey and hold her first.

No decisions had been made yet about who would get which pup. You see, serious Old English Sheepdog (OES) breeders get their pups temperament tested and evaluated for show and breeding purposes before selling them. Those of us who only want an OES for a pet are ranked pretty low in the pecking order for who gets a puppy and who doesn’t and we rarely get to choose as a result. We get the left over dogs. So, we weren’t yet sure if Zoey would be ours.

That day, the day we met Zoey and her siblings, the pups were still too young to leave their mother anyway. We stayed and visited the pups for a couple of hours. They were about five weeks old. They were a feisty bunch. They were nippers, quick to bite but also ready to play, their pen full of toys and balls. Their mother who’s name was Isabella, lay in the middle of it all, a look of pride and joy on her adoring face.

We completed our mission on that day. We met Zoey. The only problem was, now we were utterly and completely in love with her. She had to be ours but we were still a few weeks away from knowing if she would be. It was excruciating and time moved slower than a snail’s pace. So much so, that a few days later, my husband called the breeder and inquired quite seriously about Zoey. Did they know anything yet? When would they know it? Was there any chance she could be ours?

He received few answers of any comfort during that call and instead he learned that we had yet another hurdle. The breeder’s mother was also in love with Zoey. We were sure then that no matter what, she was ill-fated to be ours. We were crushed. But some time later, and I honestly don’t remember when because it was fourteen years ago, we heard back from the breeder. She decided that Zoey was going to be too much for her mother to handle. She also decided that despite the outcome of the temperament testing, Zoey would be ours. She realized that a loving home was more important for her dogs than anything else and she was entirely certain Zoey would receive that with us.

We were of course over the moon but Zoey had to be at least eight weeks old before leaving her mother and we still had a week and a half to go. To pass the time, we began readying the house. We got a crate. We got new beds, toys, a collar and a leash. We had already settled on her name. Her name would be Zoey which means “life”. A fitting name for an adorable puppy.

Time crept as our excitement grew.

Finally, the day arrived to bring our new baby home. We were beyond thrilled and our hearts swelled with delight at the thought of joy we knew she would bring. When we arrived to pick Zoey up, all nine pups were still there. She would be first to leave the only family she had ever known. There was something bittersweet about the experience. With Zoey in my arms, we walked outside toward the car and Zoey’s mother quietly followed us. We turned to say goodbye to her and to the breeder and Isabella lifted her nose to Zoey. I bent down because it appeared that she wanted to say goodbye. She sniffed Zoey and gently licked her face. She knew Zoey was going away. She knew she would never see her again. She let her daughter go with grace.

In the car, I placed Zoey in a box we had brought filled with blankets and a few toys. We had an hour’s journey home and we wanted her to be comfortable. About twenty minutes into the drive, I looked over at my husband, his face was covered in tears. He had been quietly sobbing for some time. He was full of joy but he was also sad. He was missing our departed boy Bailey. He knew Zoey would fill the hole that Bailey had left behind but he also knew that Bailey could never be replaced. No dog ever is. It was another bittersweet moment.

Today all these years later, it is Zoey’s fourteenth birthday. It’s hard to believe so much time has passed and fourteen is a big number for an Old English Sheepdog. So, today is an important day. It is a day worthy of great celebration. Zoey has lived a long and well loved life. She has offered us great joy and unyielding steadfast friendship. We have been blessed to call her ours.

Today is Zoey’s fourteenth year of life. We don’t know who much more time we have with her so we plan to honor this day and all that remain. Today is another bittersweet day.

Happy birthday to our beautiful, sweet, gentle and ever amazing dearest Zoey!

It’s All Relative (Or, I Refuse To Be A Victim’s Victim)

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It’s interesting to me that people who share the same disease that I do think that my life is somehow charmed, that I have more than they do, that I am better off. I would never judge another person’s insides by their outsides or by my own. I would never presume to know what they are experiencing even though we share a rare disease because for all of us with this disease, the journey is difficult, lonely, overwhelming and discouraging. So, to be somehow judged for having it “better” is odd and a little cruel. It’s also ironic because just about everyone I’ve ever talked to with this disease has expressed frustration at one time or another about being judged for not looking sick. Most of us understand that our disease is invisible.

Recently someone who also has sarcoidosis told me how “lucky” I am that I no longer work. She said this very matter of factly, as if it were a no brainer and never once considered how not working actually makes me feel, that there are hardships for me and my family for having made the decision to quit. Clearly I must be “lucky” because I can stay home all day feeling lousy and gasping for air. Clearly I am “lucky” because all the pressure is now on my husband to “take care” of me. Clearly I am lucky because leaving a prosperous career has created a financial stress for us. Clearly I must be “lucky” because long lonely days stretch out ahead of me day after day. Clearly I am “lucky” because I am no longer able to be fully engaged the way I once was in my life. Clearly I must be “lucky” to have lost a career I worked very hard to build. It’s all relative. I would much rather be physically healthy and be at work, doing what I used to do and what I loved. What I do now, is worry, feel guilt and struggle with the idea of going back to work all the time. I struggle to find my purpose and I wonder what value I still have to offer the world.

I would expect this kind of judgement from those who have never suffered the fate of a chronic life changing condition. I would expect them to say something so foolishly ignorant to me because they simply could not understand. I never dreamed someone who also has this hideous disease and who has walked in similar shoes would choose to be so thoughtlessly callous. We all have to make the decisions we believe are best in our own individual situations and there should be no judgement or comparison. I know people who are far sicker than I am who continue to work, some because they want to and others because they have to. I know people who have this disease who are financially wealthy and I know people who have this disease who are poor, some who became that way in part because of this disease. I know people who have remained happily married despite this disease and I know people who have failed to keep their relationships successful after their diagnosis. I know people in remission from this disease and I know people waiting for organ transplants.

Those of us with a chronic condition walk a similar path but each of us has our own independent journey to navigate. Instead of feeling envious of those who have more than me, I try to be grateful for them. Instead of feeling superior to those who have less, I try to better appreciate what I do have. Instead of comparing my disease progression to someone else’s, I try to stay focused on the things I need to do to be as healthy as I can be despite what this disease tries to do to me. I know I have it better than many and worse than some but I also know that’s just life and instead of spending my time comparing my insides to someone else’s outsides, I just try to live as well as I can and to be encouraging to others in similar situations. It’s not for someone else to decide that my life is “charmed”. I know my life is good and it is good because I choose to focus on the good and deal with the bad. I make gratitude a daily practice and I strive to be inspiring and inspired by others who share this difficult voyage.