‘HEAL’…My Own Experience

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I recently watched the Netflix movie ‘HEAL.’ It’s a film about the power of the mind over the body and how changing our thoughts about our own bodies and our health has a significant impact on our health. It also examines the need to make positive, sustained and healthy lifestyle changes like reducing stress, eating a healthy diet and staying positive in the face of a health crisis. Watching this movie was timely for me as I am also getting physical therapy right now for a long term chronic pain issue with my rib cage, an issue that no doctor could explain. During a recent therapy session my PT and I were talking health and doctors and the struggle patients have with not being heard. He also mentioned something that I could not stop thinking about when I watched ‘HEAL.’ He said that he wished doctors understood the power of their words, that patients too often and understandably, hang on what doctors tell them. So, if a doctor gives someone a diagnosis, then a patient starts defining themselves by that diagnosis and this is often when negativity and depression set in. Patients often then resign themselves to a life of discomfort and prescription management of their symptoms. Doctors do not generally teach patients to examine the power of their own attitudes or the importance of the mind-body connection.

The movie ‘HEAL’ was very much about this topic and it talked about accepting a diagnosis but not accepting the prognosis. I think this is exactly what my physical therapist meant when he said he wished that doctors understood the power of their words. In my own experience living with a chronic illness, I look back and remember how naive I was when I was first diagnosed. How important the person in that stupid white coat was to me. I was a novice and and I was scared. I had never heard of sarcoidosis before and at the time of my diagnosis, I was near needing supplemental oxygen. I was too young for that! My diagnosis was tricky as well. I had had several biopsies and they all came back as inconclusive. Finally, my pulmonologist decided that I should have an open lung surgery to remove tissue and determine the cause of my symptoms. At the time, I really didn’t know any better so I agreed. Now, I would ask for repeat less invasive biopsies. Just because they are inconclusive once doesn’t mean they will be again. I didn’t know that at the time.

I had my lung surgery on the right side. Seven years post surgery and I started having horrible right sided rib pain and to me it felt like my rib cage had caved in. The right side of my torso burned, was hypersensitive to touch, ached and I had constant stabbing pains. Looking back, I had had these pains after my surgery and they slowly, over time, got worse and worse. I have a ridiculously high pain threshold so I didn’t pay it much attention until this past year when it really started to limit my life. It was time to have it looked at. I started with my pulmonologist. It seemed the right place to start especially since I also noticed that this pain was making it harder for me to breath and she was the one who had ordered the lung surgery in the first place. She looked my ribs for half a second and told me…”Well, you’ve lost a lot of weight because of your sarcoidosis, so I think that’s all it is.” Really? Come on!

Now, I’m seven years into my diagnosis. I am no longer a novice. Her response, blowing off my pain, was unacceptable. In the past I would have taken it and just lived in pain. I wanted an answer, an understanding of the cause of my pain so I could figure how to go about treating it. I then went to my primary doctor who sent me down what I call a rabbit hole. That’s what doctors do when they don’t listen to you. I knew my pain was related to my ribs…I know my body. He sent me to have an ultrasound of all of my abdominal organs. It showed that my gall bladder was inflamed. Sarcoidosis is an inflammatory disease so the minute I hear that I have inflammation in an organ, I know it simply means my disease is at play. Unfortunately, sarcoidosis is a widely misunderstood disease and when I suggested that the inflammation might be from my inflammatory disease, he said he’d never heard of sarcoidosis being in the gall bladder. Sarcoidosis can show up in any organ. Ever heard of “Occam’s razor?” If you haven’t, it means that the simplest answer is often the right one or the simplest solution is often the right one.

My primary doctor decided that since my gall bladder was inflamed, I should have it further examined. He sent me for a very expensive and time consuming (2 and half hour) scan called a HIDA. It tests the function of the gall bladder, the ejection fraction, if you will…to see how well my gall bladder was emptying the junk it is supposed to filter through my body. Anyway, that test showed that my gall bladder injection fraction was 39%. This is low and shows that my gall bladder isn’t working at its max capacity. The magic percentage for removal is 35%. When I had my follow up appointment to discuss the test results, my doctor had no idea what to do with me. He told me I could see a surgeon about having it removed if I wanted to or not. He left it entirely up to me. Good thing I’m no longer a novice at this! I decided to go see the surgeon, not necessarily to have the gall bladder removed but, to get another, hopefully more educated opinion about it.

In the meantime, I could not stop thinking that all my primary doctor did was reveal a new problem and my rib pain was still not getting addressed. He not only left it up to me to decide if I wanted to see a surgeon about my gall bladder, when I pushed him about my rib pain, he said, “Well, you’ll just have to let me know if it’s sill a problem in the future.” His only answer to addressing it was to throw prescription medication at it, which I refused. I did not want my pain masked, I wanted an answer for the reason I was having the pain. The old me would have taken the medication, let it get me fat and feel miserable. Not anymore! What I understand now, in a fundamental way, that I did not understand seven years ago, is that doctors are there to provide advice based on their best medical education but I decide what treatment is appropriate for me. I will no longer simply settle on what a doctor says or suggests. I ask questions. I fully educate myself.

I went to see the surgeon. I didn’t need to have my gall bladder removed. I’m not having any symptoms that warrant it. She examined my ribs. She didn’t have to but she was really the first doctor to take a good look at them. I appreciated that. She sent me to a pain management doctor. I believe every speciality has its place. There are times pain needs to be managed by someone who really focuses on that and there are times pain cannot be explained but, I kept telling all of them that it WAS my rib cage…that I knew it was my rib cage and that I thought it had something to do with a long term complication of the open lung surgery that I had…Occam’s razor, right?

Chasing pain relief was never what I wanted. I wanted to know what was causing the pain. I knew something was wrong with my rib cage. I just knew it! After an alarming couple of meetings with the pain management doctor in which he went from deciding I have nerve damage and needed injections for that to having disc problems that didn’t show up on my MRI based simply on something I said, he went from wanting to give me nerve block shots in the intercostal nerves to wanting to give me steroid injections in my back…all without ever giving me a physical examination. I was already weary about seeing a pain management doctor. I had already expressed my concerns about invasive treatment, RX medication and the like. My gut kept telling me that there had to be an answer that might not require long term medical intervention through drugs. I finally got him to LOOK at my ribs. He noticed that the muscles were significantly atrophied. I asked if physical therapy might help. He said he didn’t think so but I could try it.

I’ve been in physical therapy now several weeks. The moment I was evaluated by the physical therapist, he knew exactly what was wrong with my ribs and how to address the pain. I have massive scar tissue build up all around the area where I had my open lung surgery. This scar tissue has adhered to the tissues, muscles and nerves in my torso making them function poorly and my torso has grown very week, also making breathing even more difficult. Over the past seven years I’ve slowly taught my body how to compensate for this and, meanwhile the problem has gotten worse. I stopped using those muscles properly because the scar tissue has compressed them. Physical therapy is helping me in a way no medication or injection ever could and, slowly, I am getting my life back. We are addressing the root cause of my pain by breaking up that scar tissue and rebuilding my muscles. We are solving a seven year mystery and all in a way that does not require prescription intervention and will be good for my body long term. The moment I left my physical therapy evaluation, I felt, hope. I am sure that feeling is also having a powerful impact on my progress because I am progressing faster than the therapists thought I would. I joke with them that I am an overachiever…which is true but, the power of hope that they gave me and the way it has impacted how I feel about my body has been the best medicine I could ever have received.

I’m glad I will no longer settle for what a doctor tells me. I’m glad that I’ve learned the importance of taking charge of my own medical care, that I’ve come to understand that on a very deep level, doctors should be our partners in health, not our dictators. While the movie ‘HEAL’ talked about accepting a diagnosis but not the prognosis, I sometimes think we shouldn’t accept the diagnosis either, not until we are fully informed and find doctors who treat us with the respect we deserve as patients. As patients, I also believe in the importance of self education and self advocacy. When you’re in desperate need due to pain, it can be hard to hang on to the idea that “White Coats” don’t have all the answers but in reality, they don’t. They need to listen to us too and when they don’t, we have every right to push back because finding the least invasive ways to address a medical issue are often the most healing and it’s too easy for doctors to throw prescriptions at us, label us as diseased (sometimes incorrectly) and move on to the next patient.

When we are educated about our bodies, our own health situation, when we listen to our own instincts, we are far more likely to have a positive outcome. When we take control, when we seek more than medicine but also look for hope in our healing, when we focus on gratitude and grace and the power of our own inner strength in addition to whatever medical intervention we might pursue, the chances are that we will feel better sooner and will be more in control of our own good health and destiny. Understanding all of my treatment options and having a fuller understanding of the risks and rewards of those options has become the roadmap that I now use to manage my health. I listen to the inner voice inside me that knows me and my body better than any “White Coat.” My disease no longer defines me but instead, is simply a part of me and while I don’t know what the future holds, one day at a time, I will continue to work on taking back my life and living was well as I can, knowing that ultimately, I control my own fate and there is great power in keeping my mind and body connected to one another.

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Good Grief

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I’ve had cause to do a lot of grieving in my life. Some people feel sorry for me because of it. They like to pity me and tell me how sad they are for all the loss I have been through. This used to annoy me but now, now I realize that their pity says more about them than it does about me. In every life there is loss and in every life there is grief. No one is immune to it, even those who do not recognize it in their own lives. Unrecognized grief, stifles personal growth. I know because I’ve been there too. I’ve pushed it away and I’ve tried to ignore it, hoping against useless hope, that it would just go away. It doesn’t. When grief and loss are not acknowledged, when their value and meaning are not examined, respected and felt, grief numbs the heart, cracks the soul and erodes the foundation of who we are supposed to be. Life becomes impossible to live fully because it is dulled by our detachment and our unexplained apathy.

Grief always hurts but grief does me in when I don’t walk with it, when I do not welcome it as part of love and part of life. Loss is as much a part of living as the air I breath. I have learned that without grief, I cannot love, not truly and deeply and with passion. I have learned that without grief, I cannot better understand life’s regrets. Real grief, honest grief, gives me the chance to change, to grow and to move forward in my own life with a deeper appreciation for how the past shaped me and how the future can change me. I may never get back what I lose in grief but, if I don’t grieve, I don’t make room for anything new. Without grief I am stuck in misery and misery does not really love company. Misery is…miserable.

Grieving well is a skill. It does not come naturally. Good grief requires truth. It requires exacting honesty and this, I have learned, is not only painful, but necessary. In the end, grieving well, perfecting this skill, is freeing. But, it is not easy. I hate that life has forced me to grieve so often but, learning to grieve has made me and, continues to make me, a stronger, more empathetic and open person. Good grief, grief that is real and felt below the surface of my skin, right down through the tips of my toes, is complicated. It doesn’t happen once and then it’s over. It is a process of layered emotion and each new loss triggers memories, thoughts and feelings about previous losses, sometimes setting off a chain reaction. This, I have learned, is all a very normal part of honest grieving, of good grief.

Living with a chronic illness like sarcoidosis and now, my newest diagnosis of intercostal neuralgia, a byproduct of my sarcoidosis, is hard. Life is so much harder than it used to be. I can’t do what I used to do with ease anymore because my physical body betrays me. I am short of breath. I have stabbing pains in my ribs. I easily lose my train of thought. I often lose my balance. I’m not tired but I am physically exhausted in a way sleep does not help. I am doped up on medication. Recently, I am having trouble keeping weight on. I don’t tell you all of this so you’ll feel sorry me. Please don’t. I tell you all of this to share that part of my life’s grief is caused by serious life altering chronic illness. I am not the same person I used to be. My husband notices it. He tries not to look at me with pity but once and awhile there it is, in his eyes. I hate that. As much as I know he loves me, my disease has changed our relationship. It has changed everything.

I’ve had to say goodbye to who I used to be. I’ve had to bury her. I’ve had to let go of certain hopes and dreams for my life. So, I grieve. I have no choice. If I don’t participate in honest grief about this turn in my life, I cannot accept it and if I don’t accept it, I cannot build a new life. If I don’t grieve having become chronically unwell, I will be angry and I will stay stuck in anger or depression. Neither of which seem remotely appealing to me. So, I grieve but, it’s a good grief. It’s an honest grief. It’s grief with full and raw awareness of what is no more. It stings like a thousand bee stings. It crushes me like an avalanche of falling rocks. The weight of it is sometimes unbearable.

Yet, it’s not. It’s not unbearable because, I am still here. I am carving out a new life. Little by little, day by painstaking day, I am learning to redefine my life and as I do, I am finding hope and gratitude in unforeseen places. I recently took up nature photography. The photo above is one of mine. I hope you like it but more importantly, I like it. I love being out in nature and being blessed that it shows me things other people don’t get a chance to see. My photography gives me the opportunity to deliver nature to those who don’t have time in their busy lives, to see what I see. This is an unexpected blessing. This is a new gift that I get to share. It’s one small example of proof that as I grieve, life is renewing itself for me.

So, while grief is a difficult, complicated, sometimes ugly and very inconvenient part of life, good grief has its rewards. Good grief restores us, allows us to evolve. Good grief, while gut wrenching in the mist of it, releases us from darkness and is the very thing that will bring us back into the light.

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. 

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.