The Hardest Part Of Love

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ZOEY ISABELLA – RIP – 11/6/02 to 12/22/16

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(Preamble: Anyone who knows me or anyone who follows my blog, knows that my dogs are my world. On Thursday December 22nd, I lost my beautiful 14 year old Zoey to a sudden unexpected neurological event. Life is a funny thing…so out of our control. I am sure my blog will be filled with stories about her over the coming months…the things she taught and the joy she brought me. For now though…I grieve. Please bear with me.)

What can be said about grief that hasn’t already been said? That it is the last expression of love we have to give? Or that it is the end of one thing and the beginning of another? In time our memories keep love alive? These are not new ideas. There is nothing new that can be said about grief because grief is universal, an inescapable part of life. We all experience it throughout our lives in a myriad of ways and for countless reasons. Grief is ubiquitous. It is an ever present part of being alive. It is the ultimate consequence for loving unreservedly and is it relentless and unceasing. We learn to make it quiet, to put in the background after a time. It stays with us always though, because grief is the very last part of love. It is the hardest part of love. It is all we have left of what we have lost.

Grief is cumulative. The more we live and the more we are open to love, the more grief invades us, often in the most unexpected ways and at the most unexpected times. Grief plies up and with every new loss, old wounds re-emerge, forcing us to ache all over again, again and again. Grief has its own schedule. We are at its mercy and its mercy is not tender or kind. Grief is the hardest work there is to be done when it comes to the truest of love. If we fail to feel it, to acknowledge its power and purpose, to do what it required of us, we stay stuck in darkness and sorrow.

In the midst of grief it is hard to understand that the pain is meant to bring us to a new understanding of life, that on the other side of grieving there is gratitude. There is peace in the knowledge that grief means we accepted the full value and benefit of real intimacy into our lives. In a weird way, our lives are made richer in grief because it means we made a conscious decision to accept that with our deepest affection comes our greatest sorrows and that we were brave enough to take a chance on love despite the ever present risk of misery and heartache that grief makes known to us at the end of life.

There are no right or wrong ways to grieve. It is as individual as the love we lose to it and just as the love we lost, grief is eternal. It does not really ease with time, it simply changes with it. Every event that stirs grief up in our lives is different. Each situation that creates grief is unique but, the one true thing about grief is that it is essential to our understanding of life. Without grief we cannot know the complete and abiding joy of love and we won’t experience the pure beauty of our purpose. It really is better to have loved and lost than to never have loved at all. Life without grief is no life at all.

Yes I Can!

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Yes I can…Oh yes, yes, yes I can!

These are words that I tell myself daily. This is my private little mantra. I say it when I wake up. I say it when I get out of bed. I say it before I shower and get ready for the day. I say it before I exercise. I say it before I do chores. I say it when it’s time to walk the dogs. I say it when I have to go to functions or parties. I say it before I travel. I say it when I go to the doctor. I say it when I have to take medication I’d rather not take but need. I say it when I go to bed and try to sleep.

Sarcoidosis makes it hard for me to breath, it makes my bones ache, my joints stiff, my nerves burn. It makes my chest hurt and it turns my skin funny colors. Sarcoidosis makes me tired all the time because my immune system sucks all my energy fighting phantom foes.

Life is an effort but it’s an effort that I am not ready to give up on and, I know that each day requires me to make a choice. I can give up or I can tell myself that I can do it. One day at a time is all I have to get though and when that’s too hard, I only have to focus on the hour ahead of me.

I have become my own best cheerleader. I smile when I don’t want to but, this changes my attitude and eventually, I find a little joy each day. Some days, I find a lot of it. Many days, actually. I will not let this disease beat me. I will not lose because there is too much to lose. Loss is not an option.

There are times I have to tell myself that I can tolerate anything for just a day that would horrify me for a lifetime and, I break down my struggles into manageable chunks of time. I don’t have to tackle every problem this disease throws me at once. I am learning to prioritize.

Once upon a time, I could take a big bite out of life and I could multi-task my problems and setbacks didn’t phase me. Since my sarcoidosis diagnosis, I am not able to do this anymore. Now, I try to face what I can when I have the energy and I have to break down tasks into parts and pieces and accept that things may not fall into place as quickly or as easily as I’d like them to.

It has really been about learning to adjust my expectations and if truth be told, I am still very much a work in progress in this regard. I don’t ask for help well. I still want to do it all myself. Asking for help feels like giving up but asking for help can actually be a sign of strength, a concept I understand in theory but am not yet fully comfortable with.

Each day is an adventure in picking my battles. Each day is an opportunity to face life with a can do attitude. Each day is a gift beyond measure. Each day that I tell myself that I can…I know that I will!

The Ultimate Sarcoidosis Superpower!

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I have figured out what superpower I would want if I could have one and it’s not to be able to fly, or to be invisible or, to read minds. My superpower would not be to see through walls or to have crazy strength. I would not need a special car named after me or a cape and boots or a truth lasso. The superpower I want is unique and anyone who suffers with an otherwise invisible chronic, yet life altering illness, would probably agree. I want the power to force people who doubt how I feel or question me with skepticism to live inside my skin. A little time inside this body would prove to the naysayers that life with a chronic condition like sarcoidosis is no joke. Those who doubt us would then be obligated to admit that we are actually the stronger ones, that what we experience is real and that we are a people full of grace.

There is not one thing that is easy about living in a body that won’t cooperate. Even when many of us attempt to make it look like a walk in the park, it is more like a trudge though thigh high muck without the benefit of protective boots. Our desire for some visual sense of normalcy is for our own benefit though. If we act and look as if we are okay, maybe we can believe it too, even if for a little while. Why should we be relegated to PJs, sweatpants, and no make up 24/7. We have every right to look our best and to try to live as normally as we can but, just because we are doing this doesn’t mean we don’t suffer. We do. We suffer in ways most people cannot imagine and we often suffer quietly and alone. Ours is a misery we do not share and we do not dwell upon.

If we could put just one of the “Doubting Thomases” in our body for 24 hours, I suspect they would be shocked at how we work just to take a simple breath of precious life giving air. Every breath is a chore unto itself. Every inhale and every exhale is exhaustion for us. The other thing that would surprise a non-believer is the amount of constant pain we are in. Somedays it is low level pain, sure, but it is always there and like our shadow, it never leaves us. Some days it stops us cold. These are the days we hide from you. These are the days we grieve privately for the person we used to be, before life became about effort and lost its ease.

Doubters would be truly horrified to learn how long it takes us to heal. A mild cold can turn into something serious or even life threatening in a moment’s time. A cut or a bruise can take weeks if not months to go away. There is no telling how our bodies will react when sickness lurks or injuries befall us. It is astounding how vulnerable we are because of our sarcoidosis. It is also frightening because while we know living in a bubble is not realistic, living like nothing is wrong with our immune system isn’t either and finding a balance can be very difficult, sometimes lonely and occasionally overwhelming to figure out. While we might never say it out loud, everything we do, or don’t do, revolves around our best guess in how we think our bodies will react in any given situation. We are held hostage to our disease even when we pretend we are free.

Forced empathy. That’s the superpower I want. I would use it sparingly. Only on those who are knowingly critical or obviously skeptical. I wouldn’t make them suffer long, just long enough to learn the valuable lesson that you shouldn’t judge what you don’t understand or what you yourself have never experienced.

On This Day…

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Today is Thanksgiving…A day for gratitude and love. 

Gratitude is the beginning and end of love…

Thankfulness is the gift of knowing you have enough…

Love is the joy of understanding life is bigger than we are…

This day is one set aside to celebrate the grace we are given. 

Sarcoidosis Is Not A Victimless Crime

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I’m a crime victim.

I’ve been robbed. Sarcoidosis has robbed me of my career, my confidence, my brain power and my physical strength. It has stolen my air and without my permission, it has attempted to take my passion for life.

I’ve been beaten. Sarcoidosis has tackled and battered my drive and it has pummeled my will. It has whacked at my dreams and it has thrashed my creativity. It has pounded my relationships.

I’ve been stabbed. Sarcoidosis has punctured my body with vague unrelenting pain. It has skewered my energy and gored my aspirations. It has jabbed at my peace and lunged at my serenity.

I’m a crime victim.

My attacker is my disease.

Sarcoidosis is not a victimless crime. Its destructive reach goes well beyond my body. It impacts every area of my life. Like all violent crimes, it has a ripple effect. It has isolated me from my former self forever.

Precious Lovely Cherished Facts

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Facts, facts, facts…trustworthy, inconvenient, dependable facts…Oh, how we’ve broken you…Facts, oh facts…Isolated and alone…Facts, you make us too uncomfortable to care about truth.

Facts, oh facts…Once grounded in reality…You’ve been abused too long, tortured and tormented by ideology, the internet and 24 hour news…Facts, facts, facts…Once so reliable, so steadfast and true…It’s not your fault you’ve been abandoned for lies.

Facts, facts, facts…Where have you gone? Facts, oh beloved facts…What we have done to you…Twisted and turned, manipulated and impeached…Facts precious facts…How you’ve been lost…Surrendered to falsehoods and fakery.

Facts lovely facts…Some of us miss you. Facts, facts, facts…Precious, unblemished, truth telling facts…You’ve run away from our flights of fancy…You’ve taken our sanity, our reason and our dignity.

Facts, facts, facts….We ruined you. We took you for granted. We disregarded your importance. Facts, oh cherished facts…How we did you harm. Facts, facts, facts…The precious lifeblood of honesty and integrity…Some of still need you, dear facts….Please come home.

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!

The Sound Of Silence

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I’ve been in a quiet place lately. At first I thought my brain was just empty, devoid of valuable thought, lacking imagination. I have felt inadequate by my lack of inspiration. I’ve not understood the importance of stillness. In truth, the quiet is sometimes so loud that it can be overwhelming. I tend to become uncomfortable when my mind ceases to dream. I’ve always had a busy brain but since my sarcoidosis diagnosis, I have become damped by the sheer power it sometimes has over me. Sometimes I fear how muddled and mucked up my musings become. I was never this way before my disease. It’s frustrating. It’s annoying. It’s downright embarrassing at times to know you are sharper than you appear to be.

Objectively, I know that my mind, despite these setbacks, is still keen. I know that my brain while slow and sometimes uneven, is still capable of cogent thought. Much to even my own surprise, I am still capable of reasoned insights. It just takes me a little longer to get there now than it used to but, I guess that happens to a brain that doesn’t get as much oxygen as it once did.

When I am armed with the confidence of coherent meditation, I am less afraid of silence. In my better moments when I am not feeling insecure by my sarcoidosis, I do know that quiet times are actually a gift. A settled and easy mind isn’t the same as an empty mind. My brain does not have to be in a constant state of motion for me to know that I am still an intelligent person. Quiet is actually a good thing sometimes because often when my mind is quiet, it is peaceful.

The silence in my head is relatively new though and has only really happened to me since my sarcoidosis diagnosis. It is two fold. I am slower in thought, partly because my brain just doesn’t move as fast but, also because I have become more deliberate in my thinking. I see and experience the world very differently now that I have a chronic health condition. Much of what once mattered so much to me no longer does, including for example, the need to be right. Now, I’d rather be happy so sometimes arguing the point just isn’t worth my serenity and silence allows me to keep my peace of mind.

Slowly I am learning that the sound of silence, those quiet places, are actually full of wisdom and it doesn’t mean that I am stupid now just because sarcoidosis has crept into my brain and made it more sedate. I am learning that only in silence comes clarity of thought. I am learning that only in silence comes humility. I am learning that only in silence comes openness. I am learning only in silence can I really hear the truth. I am learning that silence is sometimes the best answer to someone else’s anger. I am learning that in silence there is actually a lot of strength.

So, quiet places are good places and it is really only because my sarcoidosis has forced my brain to slow down that I realize what an unexpected gift silence really can be.

Unlocking The Mystery…????

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I’ve recently been privy to a conversation about what type of disease sarcoidosis really is. It is often referred to as auto immune but reputable organizations like The Cleveland Clinic’s Sarcoidosis Clinic, refer to it as an inflammatory disease. The Mayo Clinic also refers to sarcoidosis as an inflammatory disease. So, why is it so important to make the distinction anyway and, why do some people get so upset when sarcoidosis is referred to as an auto immune disease? These are questions I cannot answer because honestly, I don’t really care about the distinction and frankly, since there is no known cause or cure for this disease and it is a disease that involves the immune system and also causes inflammation, maybe it really doesn’t matter.

The only reason I can see to make a differentiation is that auto immune diseases are typically described as diseases in which the body’s immune system attacks healthy cells. What happens in sarcoidosis is a bit different. What happens in sarcoidosis is actually an immune response to something real or even imagined, where the immune system goes into high gear and then forgets to chill out again after the threat is gone. As a result, immune cells begin to form in clumps, called granulomas, in and around organs. These clumps are not actually dangerous on their own but they can begin to interfere with proper organ function just by being in the way and because the immune system stays in high alert there is also sustained inflammation in the body, both of which can begin to cause organ damage over a long period of time.

So with sarcoidosis, the body is not actually attacking itself as it does with traditional auto immune diseases. Instead, the immune system is attacking a threat as it is designed to do but then it falters and doesn’t retreat. The “off” button breaks. The reason for this is uncertain, which means the cause of sarcoidosis is unknown and there may very well be many different mechanisms that trigger an immune response of this nature. This could also explain why sarcoidosis is such an individualized disease. It does not seem to follow any particular pattern and patients with it report a wide variety of symptoms with wildly differing degrees of severity.

In the final analysis, what jumps out at me isn’t what classification this disease falls in. It is that since there is no known cause, there can’t be a cure and we need a cure. We need a cure because people do die from this disease. We need better treatment too because the treatment is often worse than the disease. Since sarcoidosis is a disease that involves the immune system and causes inflammation, it is easy to understand why there is confusion about what it actually is. Until better research is done to figure out why sarcoidosis causes such a powerful and potentially life threatening immune response, it will remain impossible to truly unlock the mystery of this maddening, life altering and heartbreaking disease.

Cutting To The Core

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There are times having sarcoidosis doesn’t phase me much. I am able to function with relative easy on every level but there also times, more than not actually, when having sarcoidosis is difficult on every level. My body doesn’t work the way I want it to. I gasp for air. My nerves burn. I crack and ache and find myself feverish for no apparent reason. My body is slow and sluggish and my brain is cob webbed and dusty. I sometimes feel like every step I take is like trying to walk through thigh high mud. I take a lot of medication and I can’t eat what I want. I don’t work anymore because my body can’t handle the stress and my brain can’t handle the demand to think.

All of that is bad enough, right? Unpleasant to be sure but, the thing that sometimes makes having sarcoidosis the absolute worst is something far harder to talk about than a broken body and a mixed up mind. It’s humbling to admit but the hardest part about having sarcoidosis has nothing to do with the physical or mental challenges. It’s dealing with the emotional ones and for me more specifically, it is learning to deal with the loneliness that comes with having a chronic condition. There is something about being perpetually unwell in unpredictable ways that is beyond explanation. It’s a private kind of hell that no one else understands. As hard as I try to fight for my life and I do fight for it, there is a part of me that knows I am not nor will I ever be truly me again. I lack confidence in ways I never thought possible because I just don’t know when my body will cooperate and when it won’t.

The bottomline for me is that now that I have this stupid disease, I am alone a lot, partly because I no longer work but also because there is a strange comfort it in now. If I’m not around other people, then I don’t have to explain what’s wrong with me when I can’t find the right words and forget my train of thought. I don’t have be embarrassed when my lungs decide not to work correctly and I begin to gag and wheeze and gasp for air. I’m always offered a well meaning but unhelpful glass of water by helpless on lookers when this happens. If I am just alone then I don’t have to think of a good excuse to leave the gathering early much to the dismay of the host. There is an ease in just being on my own and generally I do like my own company.

There is also a price to pay for being alone a lot and that price cuts to the core of me. It is the danger of crossing over from alone time into the loneliness. There is a feeling of complete inadequacy in feeling lonely for me. There is a feeling of utter failure and there is a deep and quietly all consuming feeling of fear in feeling lonely for me. These are the challenges I find the hardest to face for having sarcoidosis. I try to balance my need to be alone against getting lonely but I admit, I am not always successful. In fact, I fail more than I succeed when it comes to this internal battle because loneliness has a way of creeping up on me and then blind siding me with profound sadness that sometimes I can’t even explain until I realize that I have once again crossed the line from much needed and often healing time on my own into the pitiful place of self inflicted isolation.

I feel a sense of shame for feeling lonely sometimes. I feel deeply deficient in some way for being lonely. Successful people should not feel this way and I have generally believed myself to be a successful and fortunate person. I am usually able to overcome life’s obstacles. I am not entirely able to tackle this one though because time and time again, it sneaks up and deep unhappy solitude takes hold of me. I’ve been in that uncomfortable place of darkness for awhile now again. This time I am shedding light on it. I am writing about it, putting it out there and laying myself bare. I am handling this bout of oppressive isolation differently. I am not going to feel shame about it. I am going to accept it for what it is. It’s just another symptom of life with a chronic health condition. Nothing more. I am going to publicly acknowledge my loneliness this time and as with all other symptoms and hardships of this disease, I am going to do what I always do. I am going to fight. I am going to overcome it. I am going to find balance again. It’s time to move away from this dark place and back into the light.