Dear Doctor…

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Please listen to me. Look at my lab results, check my scans, review my tests but, please whatever else you do, just listen to me. Listen to me without judgment. Listen to me and help me figure out what is wrong with me. This is why I am here. I need your expertise, I appreciate your expertise but, I also know how complex the human body is. I know this because I live with a rare and often misunderstood disease called sarcoidosis. I know this because I might very well know more about my disease than you do and, I certainly know more about my body than you do. We must work as partners, you and I. If we don’t,  you cannot help me. So, please listen to me.

You have pieces of the puzzle because you know how to interpret all those tests you ran on me. You have pieces of the puzzle because you spent years in medical school and you know things I don’t. I understand this. I respect this. This is why I am here. Remember though, that I know things too. I am the one who lives inside my body. I know what is normal for me and what isn’t and, when I tell you something isn’t normal, despite whatever your tests might show, I need you to listen to me. I am not wrong. I am not making it up.

Doctor, please don’t be threatened that I am knowledgable about my disease and my own body. Please don’t get defensive if I ask you pointed questions. I want to understand what is happening to me. I deserve to understand what is happening to me. Maybe you don’t know. If you don’t, I promise I won’t think less of your skills as a physician if you just say so. It would actually be a refreshing change from being utterly dismissed as a liar. I’ve lived with a rare disease that does strange things to me long enough to know how intricate the human body can be and that at times it is a vexing and imperfect instrument. It seems common sense that tests results are as much to rule something out as to rule it in. They may not always match what I am saying. So, please listen to me.

Exam me Doctor. Don’t be afraid to touch me or look at my body if that will help you better understand why your test results don’t correspond with my pain. My pain is real, Doctor, I promise you that. I need for us to work together to find out why. How can we address my pain if we do not understand the cause? I am not looking for a quick fix, Doctor. I just want the quality of my life to improve. Doctor, do you think that is unreasonable? Doctor, I need you to engage me as an equal, to let go of your arrogance and self proclaimed righteousness that you are superior to me. You are not.

Doctor, I understand that when I tell you this needs to be a partnership, that I must also do my part. I must be self aware. I must be willing to listen, too. Doctor, I don’t want a stopgap measure to address my pain. I don’t want a makeshift solution. I do not want to spend the rest of my life chasing pain relief. I want to know the cause of my pain and I will make lifestyle changes and I will work hard to do what is necessary to address my pain if you will only help me better understand it and work with me to find the best least invasive way to address it. Let’s not go to extremes just so you can get paid or get me out of your office.

I want the very best for myself, just as you would if you were the patient. Doctor, please try to understand that. Not every patient that comes to see you is one size fits all. Not every patient who comes to see you is a drug seeker or a liar or an attention seeker. Please don’t be cynical, Doctor. I am here because I need help. Please, listen to me. Let’s work together to improve the quality of my life. After all, isn’t that why you went to med school in the first place? To help people? The best way to help someone in pain Doctor, is to listen, listen when an open mind.

I’ve said my piece. It needed to be said.  Now all I can do is hope, Doctor, that you will listen.

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Not Normal…You Say?

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Sitting in the waiting room waiting to see yet another new doctor, this time a pain management specialist, you heard me…that’s right…my sarcoidosis has led me to a freaking pain management specialist, but I digress, I’m trying to fill out the new patient forms and I don’t have even the vaguest clue how to fill out those stupid pain scale questions. You know the ones…”What’s your pain on a scale of one to ten right now”, “what’s your pain level when you wake up in the morning”, “what’s your pain level when you do this or that thing”… blah, blah, blah. I have utterly no self awareness regarding my pain. Why? BECAUSE I AM IN PAIN ALL THE TIME! It’s just become part of me, no different than a limb or a finger nail or a tuft of hair.

I let out a heavy sigh. My husband, who usually attends my medical appointments for the extra moral support, asked what was wrong. I told him that I wasn’t sure how to fill out the pain scale questions. I said and I quote…”Pain is so normal for me.” He said, in the most loving way possible, “I am sitting here right now and I am not in pain. Pain is not normal.” Not normal? Come again? What did you say? Maybe I heard that wrong!

I found it both reassuring and slightly alarming to hear that pain is not normal. I found it reassuring because it means seeing a pain management doctor is probably the right specialist at this stage of my disease process. I found it alarming because I realized at that moment, that I have been in some kind of pain so long that I don’t have a “new normal”…I have a “this isn’t normal at all” thing going on. But, I’ve been, at the very least, uncomfortable in my skin so long that for me burning sensations, sensitivity to touch and feeling like my bones are about to break are all routine. How horribly sad is that?! It’s awful. No one should have to live like this and yet…

Doctors sometimes say stupid things about sarcoidosis. At this point, I’m sure I’ve heard it all. One of the worst things I have heard doctors say is that sarcoidosis doesn’t cause pain.  Cover your ears if you don’t want to hear me cuss because, that right there is simply bullshit. When you can’t breath and you gasp for every breath, guess what? That’s painful. When, because you have sarcodiosis, you’ve also developed something called small fiber neuropathy, guess what? That’s painful. When you had to be diagnosed with sarcoidosis through an open lung biopsy and now your rib cage is caved in, as is the case for me, guess what? That’s painful. When you frequently lose your balance and fall a lot because you have sarcoidosis, guess what? That’s painful. When your sarcoidosis gives you arthritis, guess what? THAT IS PAINFUL! So, doctors who tell you sarcoidosis isn’t painful are, in a word, idiots.

Earlier this year, my right rib cage caved in. It’s concave. It’s not supposed to be concave. My entire right side is sensitive to touch, burns and my ribs often feel like they are about to break. This is most certainly not normal and it hurts. It’s exhausting to hurt all the time. My pulmonoloigst said this happened because I lost weight and blew me off. My primary doctor sent me for a bunch of tests because he was sure it was my gall bladder. How your gall bladder makes your rib cage cave in is beyond me but, there you have it…typical. Doctors blow you off or take you down a rabbit hole you know darn well you don’t belong in. I even tried to check in with the surgeon who did my open lung biopsy because that’s the area where it hurts the most so that made the most sense to me…He refused to see me.

As is so often the case with sarcoidosis, because I am sure this rib issue is somehow related to my sarcoidosis, I took to the internet to diagnose myself and, I spoke with other sarcoidosis patients. We learn more from each other than we do from most of our medical professionals. I’ve also gotten good enough with internet self diagnosis, that I don’t waste time on sites that aren’t reputable or have valuable information and, I don’t get freaked out by everything I read. I’ve probably read more research papers about sarcoidosis than most MDs. Sure enough, I found a diagnosis that fits and sure enough it is related to my sarcoidosis. I have intercostal neuralgia. I’m sure of it and it is related to my sarcoidosis because it is a complication from my open lung biopsy to diagnose my sarcoidosis. I took this diagnosis to my primary care doctor and he thought it could be that but then sent me to a surgeon to see about having my gall bladder out…there I was stuck in that stupid rabbit hole.

Fortunately for me, and maybe because I was due for a small miracle, this surgeon didn’t think my gall bladder was the problem and, after listening to everything I had to say AND doing a thorough exam of my rib cage, she sent me to a pain management doctor. She truly believes I am right about my diagnosis of intercostal neuralgia. Hala-freaking-lua! So, there I was in the waiting room waiting to see my new pain management doctor for the first time, gut punched with the reality that pain is NOT NORMAL. I know…I’m shouting a lot…sorry…I’m just a little worked up. I’m due to have an MRI of my thoracic area this week and I will meet again with the pain doctor after that to discuss next steps in addressing what’s causing my pain but even he agreed that it’s likely intercostal neuralgia. BINGO!

Sometimes it really helps me to ask my husband what’s normal and what’s not. It’s so easy to settle into my pain, to accept it as just another part of me, to not realize that I should and I deserve to seek comfort. I suspect pain will always be part of my life but doing all that I can to try to minimize it needs to be just as big a part of my life. I do not have to, nor should I accept a “this isn’t normal at all” kind of life. It’s a constant battle when you live with chronic illness. You battle the medical community to be heard, you battle constant fatigue, you battle your own emotions and you battle that sneaking feeling that “not normal at all” IS normal. I’m here to tell you that it’s not and while I don’t know how successful seeing a pain management doctor will be, I know one thing is for sure…I will keep seeking to find a better definition for normal for myself.

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.

The Sarcoidosis Promise

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I promise to rise each day and fight for a life…my life! 

I promise to take care of my mind, my body…my soul.  

I promise to eat a healthy diet.

I promise to get regular exercise. 

I promise to rest when I need it. 

I promise to push when I can.

I promise to be grateful. 

I promise not to cry too much.

I promise to be there for others in need who suffer as I do.

I promise to be voice for the voiceless. 

I promise not to be defined by my disease. 

I promise to seek joy.

I promise to march through pain.

I promise to believe in the power of hope.

I promise not to judge what I don’t know. 

I promise to look my best.

I promise to raise awareness about sarcoidosis.

I promise to advocate for myself when doctors try to belittle us. 

I promise to continue to seek adventure.

I promise to appreciate my loved ones…to thank them every day. 

I promise to remove negativity and unnecessary stress from my life.

I promise to cling to faith that something better waits for us. 

I promise to make love a priority in all my actions. 

I promise to be an agent of peace.

I promise not the hang on to anger. 

I promise to let go of what is out of my control. 

I promise to remember that life is short…too precious to be squandered. 

I promise to hug my dog every day. 

I promise not to give up. 

 

A Question Of Transcendency

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Here’s what I don’t know. I don’t know if we assign meaning to the random out of sorrow when we are longing for those we lost or, if there is something truly transcendent that happens when we need it to. Maybe it doesn’t matter. Maybe the only thing that does matter is that these otherworldly events bring us comfort when our hearts are heavy, that they make us feel connected to who we lost and what we miss.

I’m in the mist of grief right now. The loss of my Zoey, my precious 14 year old Old English Sheepdog, to sudden death has rocked my world. Some have said that I will feel her presence around me if I am open to it. I’ve suffered profound loss in my life before and I admit, this has not generally been my experience so, to hear this yet again makes me skeptical. That being said, I’ve had two moments since Zoey’s passing that have given me cause to be more open minded.

The other night, I was walking my other Old English Sheepdog Abby. An evening walk was something Zoey, Abby and I did every night together before bed. It was never a long walk, just enough for them to do their business and get a little fresh air before bed. This particular night, was the first time I took Abby alone. I knew it would cut through me and it did. I felt Zoey’s absence intensely, just seeing the bush she usually stopped to sniff every night brought tears to my eyes but, in my desire to keep things as normal as I can for Abby, I swallowed my sadness and we slogged along, a knot in my throat.

Then, I looked up. The sky was full of clouds blurring even the half moon but there was one star that shone brightly. It danced and twinkled in the mist of the dark night sky and as I watched it, a feeling came over me like no other. I felt enveloped by warmth and for the first time in the past two weeks since Zoey’s passing, I felt calm. I didn’t want to cry anymore, at least for that moment and, I knew that star was Zoey. I felt that it was her letting me know that she would always watch over me.

Today, I spent most of the day feeling very numb. I thought I was done weeping, that there was no more use for tears. Crying was feeling like a pointless undertaking, like there was no more cathartic value in it. I don’t want to be numb but when the tears don’t come, they don’t come and you can’t force them. I also don’t want to be crying all the time. I can’t really have what I want, which is Zoey back at my feet, by my side or playing with her sister. So, I spent most of the day going through the motions, functioning but not really present. I even attempted to go to the grocery store but on the way, I turned on the radio and the song, “I will always love you” by Whitney Houston came on. It’s a song I have not heard for years.

The song begins like this…”If I should stay, I would only be in your way. So I’ll go but I know I’ll think of you every step of the way. And I… will always love you…” I burst into tears. I immediately thought of Zoey. I thought of Zoey being old and deciding it was her time to go, that she felt she was in the way long enough, that she didn’t want to be a burden anymore, not that she was but she always thought of me first. I know she did. She only wanted my happiness. Her love was completely unconditional. I think she knew my greatest fear for her was that she’d lose her independence. So, she did the last loving thing she could do for me and died quickly, without ever losing her dignity.

The song goes on…”I hope life treats you kind. And I hope you have all you’ve dreamed of.  And I wish you joy and happiness. But above all this I wish you love.”  The tears continued to pour down my face. I had to pull the car over. I wasn’t numb anymore. I was a puddle but, again I felt this incredible feeling of Zoey’s spirit. I felt like she wanted to tell me one last time so that I would have no doubt, just how much she loved me because she really loved me. As I did her. This was not nearly the comforting moment I felt looking at that twinkling star in the sky the night before but, it was poignant and profound and somehow made me feel yet again, that perhaps there is something to being open to allowing the spirit of those we love to surround us in our sorrow, that maybe it’s a good thing to be open to the idea that our love transcends all earthly understanding. Love is in fact forever and, it will find its way to us after death…if we allow it to.

The Truth About Grief

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It is universal…

It is lonely…

It does not end…

It changes over time…

It makes other people uncomfortable…

It resurfaces with every new loss…

It is individual…

It cannot be avoided…

It has no timeframe…

It strikes without mercy…

It is as natural as breathing…

It is part of life…

It is inconvenient…

It both clouds and clarifies our thinking…

It should be felt without guilt…

It means we loved deeply…

The Hardest Part Of Love

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.