Living Through the Pain

My pain has been stubborn lately, making even the simplest trip to the grocery store or a quick Swiffer over the floor rather tedious. I believe in listening to my body, and I usually do. But sometimes, I push the envelope and live my life as I would anyway. If I refrained from doing what I have planned anytime and every time I felt sick, I would never do anything. And THAT isn't life to me.

I believe this is one of the greatest challenges for anyone with chronic pain. It's finding a happy medium between agony and the general population's normalcy. It's finding a pace that is normal for YOU. And it's the ability to feel at peace with the normalcy you find. As part of the irrational yet absolute guilt I feel for not keeping up with "normal",  it is very hard for me not to apologize for the gap between my normalcy and the normalcy of those who aren't dealing with my health issues. It may sound ridiculous to most, but there is shame associated with the shortcomings brought on by chronic pain.

If I didn't help around the house, go shopping, socialize, etc whenever I feel sick,  I would feel such a sense of failure that, combined with the dishonor I already feel just for BEING ill, I would end up catatonic with disappointment, sadness, and guilt. Guilt for having a life that many would kill for, literally. A life with limbs that move on their own. A heart that beats, eyes that can see, organs that work (at least for the most part.) My body and all its functions are miracles, a recipe for a wonderful life. I am SO blessed, despite my setbacks.

I can't recall the last day I woke up and had no pain. Nor can I recall a day when that pain didn't endure most, if not every hour. The same goes for nausea. I have medications that help those symptoms, but they don't take them totally away. I have no desire to be dependent on medications forever, but for now they are what's getting me by. My hopes are that the upcoming surgery I'm having will greatly help my pain, and I can go from there once I've healed from the operation.

Long before these illnesses came along, I was in therapy for an eating disorder, and we were discussing how I felt that my disorder had set me back on my life's path. My therapist said that life is not a linear journey. We don't start at the same place and move forward. Instead, life is like a spider web; it branches out with each journey, and the web changes. And much like snowflakes, our spider webs are all unique.

This outlook really helped me, because thinking of my life on a linear path leaves me feeling really behind, as though I'm failing. Thinking of the web gives me the feeling that there is hope. My web is still in progress, just not the same way anyone else's is. If I answered to my pain every moment of every day, I would essentially be a statue. I wouldn't move, I wouldn't do anything. So the "normal" I've found is somewhere in between being immobile and dusting tables while standing on my head. It all depends on the day. I'm simply spinning my web set to the music my body plays and trying to be proud.

Living History

There was a very happy soul in the Universe Sunday night. She was smiling down by the light of the summer moon. Her womb hadn't been full for almost sixty years, but there was a pulse of the lives that started from within her mother spirit all those years ago that echoed off the stars. Sunday evening she felt pride that after all the ups and downs of life, her babies still reunite and celebrate the connection they share, which includes sharing their children, and sharing their children's children. What greater affirmation is there for a life well-lived and love-filled than that family chain continuing to enjoy each other's company long after your mother-self has left the Earth?!

I've written about my Nana before, and I feel her presence with me at all times, but Sunday was special. Of her three children, my mom and Uncle Denny are the two still living. My beloved Uncle Rusty passed from cancer two years ago. My mom, nephew and I are traveling to Colorado next week to see his family, and we're beyond excited! On Sunday, my mom and I had a dinner at our home as a reunion of sorts. Denny and my Aunt Vicky's daughter and granddaughter, Nicole and Cassidy, were visiting from Idaho. They all came, and my brother, Keith, Sonja and my nephews came for a nice dinner. The great surprise of the night was that Denny and Vicky's son, Jim, his wife, Lisa, and their daughter, Sidney, and twins Jade and Marcus were able to come at the last minute. With the exception of my Uncle Rusty's family in Colorado, all of Nana's family was together!

As I watched the evening unfold, I watched grandchildren parent her great-grandchildren. I imagined the way she would interact with each great-grandchild if she could have been there. I looked around the dinner table and imagined I was looking through her eyes, watching all the great-grandchildren who ranged from twin toddlers to two three-year olds (one boy, one girl), and a six year old boy. Then there was the honorary guest, fourteen-year old Cassidy, who was the one great-grandchild who Nana had the pleasure of holding in her arms. My mom was able to find pictures of both Nana and I holding Cassidy as an infant, and it was so special watching Cassidy look at them and seeing her smile when she found out they were hers to keep. She was too young to remember the occasion, but it was sweet to watch the picture show her how beloved she was (and still is.)

Nana and I shared a very close relationship. I was the first grandchild of six, and she and I shared in our unique spirituality/religion, our love of writing, to state just a few common traits. Perhaps the oddest thing for me about Sunday's dinner was that of the four grandchildren present, I was the only one without a child of my own. It made me sad, but ultimately I know that the reason my child wasn't there was because my son is already with her. I lost Gabriel just five short months before Nana died. Perhaps the greatest comfort I have with Gabriel's passing is knowing that Nana is with him every day, nurturing and loving him in ways that gives my heart peace.

Sunday's dinner was Nana's legacy alive and thriving. Every tiny footstep of a great-grandchild held at least part of her spirit in a pitter of the pitter-patter. It was a lovely reunion of a people whose lives may all go in different directions, but there is still an enduring love of family at its core. I feel so blessed to have shared in the evening together!

Another Year

I remember being told growing up that birthdays weren't the same when you're an adult. There aren't the celebrations, the large gift exchanges, the cake with candles to blow out. And as I've aged, I've come to understand this truth, and birthdays have become mere reminders of how much time has gone by, so fast you can almost feel it blow like wind through your hair with a W O O S H.

With my birthday looming in just a few days, I have been anticipating it with the same adult perspective I have for at least fifteen or sixteen years. I don't want a party or a cake. I told my mom that I would be happy to ignore the day all together, especially since we'll be heading on vacation just a few days later. But tonight I started to think about it, and my opinion has started to change.

Just weeks before my 37th birthday last year, I underwent a surgery that led to sepsis, so I had emergency surgery the next day. I lived through almost a week in the surgical ICU and another five days on a normal surgical floor. I spent almost two weeks in a rehab hospital until my body was strong enough to go home. Close friends made a birthday evening for my mom and I and another friend. I received several meaningful gifts. Being home was the greatest one.

I spent six repulsive and challenging months with a dysfunctional colostomy (the surgeon even called it that.) I felt imprisoned by it. I felt awkward and petrified to leave the house. There were days when mere movement created incomprehensible issues. The experience was humiliating and horrible. I couldn't wait to have it reversed. By the grace of God, my surgeon was able to do that without issue the end of January.

Since then, my wounds have healed. My mom and I spent a blissful ten days in Florida. It was amazing to feel the sand between my toes and hear the surf as it crashed on the shore. Because of the amazing salt air, I was able to go almost the entire vacation without wearing my oxygen. My lungs felt clean and strong!

Since then, I've been blessed with time spent with my precious nephews. I discovered that I enjoyed writing a blog, and my 9-year old chocolate lab Zoe is usually at my feet as I do it. My mom and I are going to Colorado the end of the month to reunite with her brother Rusty's family. We're taking my nephew with us, and it will be his first airplane ride. He's going to be reunited with his cousin Ella, and we ALL get to meet her new sister Olivia. I can't wait for this getaway, especially to see the expressions on my nephew's face as he experiences all the new adventures.

As I think about all this, about all of my triumphs and blessings, I realize that I have a LOT to celebrate this year. God has blessed me with so much! Time has W O O S H E D and W O O S H E D and                   W O O S H E D some more as I've undergone and overcome all these struggles. And as I've enjoyed all my blessings, it has W O O S H E D even more. All  these things have passed me by so quickly, it would be easy just to go on living without slowing down long enough to acknowledge them.

Being a grown up and not wanting a birthday celebration shouldn't be a reason to pass up the opportunity to celebrate and show gratitude for another year of life, especially because it's a year I almost lost. I could easily be watching my birthday from the other side, and I am grateful to be alive, truly alive. I don't need a party or cake or especially any gifts because I already have the GREATEST gift ever, and that is this life. This challenging, beautiful, humorous, inspiring, exasperating, blessed, and amazing life. I have to put the break on the W O O S H  lest these years and their gifts pass me by. Nothing sounds better than a party for two, just God and I, celebrating my birthday this week and our partnership of love.

Low Tide

It has been awhile since my last blog, as my creativity was temporarily out of order. I've been over-saturated with the dark part of my disease. There is a misnomer about physical pain affecting only the physical part of a person. It actually affects the WHOLE person, mind, body and spirit, and that is where I have been.

I've been all wrapped up in this pain that makes me feel like I have a straightjacket on physically, emotionally and spiritually. My body is controlled by the pain, my mind is controlled by the pain and my spirit is controlled by the pain. As much as I try to remain positive, there are times (ie. the last few weeks) when I feel completely paralyzed by my pain on every level, and I feel ashamed, because it makes me feel weak.

It's like an eclipse of the sun when everything gradually dims, and suddenly you find yourself in complete darkness with no light except the low wattage flashlight from your heart that reminds you with every beat that you are still alive. Were it not for that pounding heartbeat this past week, there were times when I thought perhaps I was dying. My mind and spirit felt as though they were shutting down. I was detaching myself from long-term goals and hopes for love and romance. I stopped imagining the type of aunt I'd be to my young nephews when they grew up and planning how to make my book-writing dreams come true. There was no future. I was sinking and scared.

Like a snow storm, my severe pain has made it impossible to see even an hour ahead of the present. It takes ALL of me to keep me on track, the pain would happily derail me at any time. It's like a wicked imaginary friend who sometimes makes living very challenging. Surviving each moment is a feat of great proportion. The physical pain is horrible but its the emotional and spiritual pains that are the hardest. My pain is like a veil of darkness that falls upon my mind and spirit, sucking out any hope of escaping the nightmare my body is enduring. It suffocates me emotionally.   

The physical pain makes me hurt to move, to breathe, to think. I have been isolated by my illness for so many years, keeping me at home for the most part, as I can't drive on my medications. It is hard to do a lot between my physical pain and my need for oxygen. However, in the past week, it has isolated me to my bed for the most part. I have been so overwhelmed and depressed, and my spirit has no energy.  Last week I found myself staring at a wall in the dark. By the time I realized I was doing it, more than an hour had passed. I have been immobilized by this pain and what it is doing to my life.

In a week I'll be 38. I'm on disability. I haven't been in a relationship or even a date for eight years. I don't remember what it feels like to kiss a man or just hold hands. And for as much as I would love to meet someone, I don't know how any man will ever want to kiss a woman who in on oxygen. I can see it now; I'll be making out with someone in my bed, we'll be rolling around in passion and we'll get wrapped up in my oxygen tubing, and our arms will be wrapped so tight that we can't reach our cell phones to call for help. Hmm.... not entirely my idea of reigniting my love life.

As I write this, I feel so much shame. I'm ashamed of the pain, of my shortcomings because of the pain, and of my future if the pain continues as bad as it is today. I feel like I sound like a whiny wimp, and the last thing I want is to sound like I'm feeling sorry for myself. That's the last thing I want, the last thing I think any chronic pain patients want.  I create these posts to reach out to others with similar challenges, with the hopes of making them feel less alone on their journeys with pain and all its manifestations.

I share these experiences in an effort to make a difference, to inspire, to reach out. I suppose I'm sharing my lows, my weaknesses, to let others know that it's OK to admit to those feelings, because they ARE real, they ARE valid, and they are a large part of life with chronic pain. I don't want to be pitied, just like I doubt others do. This post is about the human condition in midst of this war. I've always heard the saying, "Leave no man behind."

I will not leave you behind. Keep reading.

Love Theory

These physical journeys we take with our bodies are nothing short of remarkable. I am ever in awe of the way each part of the body works in tandem with each other, like a big puzzle that was designed before we took our first breaths. They are incredible, even when illness occurs. It's the way we treat our illnesses that can make the greatest difference in how we heal. My "Love Theory" is based on the Golden Rule,  Treat others the same way you want them to treat you.   It is meant as a guide for maximizing our enjoyment of life while also maximizing what the body can do amidst severe illness and pain.

Around the 5th or 6th year anniversary of dealing with my painful disease, I made a huge shift in the way I saw it. Rather than seeing it as the shackles around my ankles, I started imagining it as a chain of links by which I was connected to other patients, creating a human chain.  My illness became integrated, not isolated. It's about finding unity amidst adversity.

With the new vision of my pain being a path towards inner strength and empathy, I started looking for other ways to stay positive even when it seemed there was  no hope. I felt like my body and spirit had a friendship; two bodies of energy trying survive. Then introduce the illness that uses both of us as hosts.  I think the normal reaction is to detest that which attacks us. It's human nature to run FROM illness, not TOWARDS it. We want to purge disease in any way we can.

I speak from experience when I say that Western medicine is running out of options, at least for me. As for alternative medicine, there are great options to help manage symptoms and heal the body. For example, acupuncture helps a lot for certain symptom control. However, I can't do it every day, or even every week. I've been needing something I could access from within, 24/7, no cost, no transportation. All I needed to do was find my center, and I would find a source of healing.

This is where the Golden Rule applies. As I have been searching my soul for internal wells of healing, I could hear my Nana telling me to bless my body, to love it. She dealt with so much pain, especially at the end, but she always declared her unconditional love for the vessel that had taken her through life. I started wondering if, perhaps, our illnesses treat us with the same attitude we deal with them. I realize many of you at this point are thinking me crazy for giving my illness the power of intention. You are welcome to stop reading at any time.

I wondered if we dealt with our illnesses or symptoms with a loving spirit, not a hateful one, if we nurtured them towards healing, they would heal almost like babies with colic that are cradled in loving arms until they fall asleep. It's not a matter of liking or loving being sick. It's the attitude with which we choose to heal. We can heal lovingly or hatefully. If I loved my body, with all its imperfections, and treated my illness like a child that needed healed, perhaps it would be less angry. If we can treat our illness and pain with love, perhaps it will recover with love. I believe love trumps every other emotion in spades. If that's our attitude towards healing, I believe we would see a difference on our roads back to health.

I think we all come into the World with love. On the same token, we all die with love as we are returned to God. Why should we not suffer with love? This isn't to be misunderstood as loving the suffering and scars and disabilities. It’s about treating our illnesses with the same love, respect and dignity we would like to be shown on our path to healing.  

I believe that healing is a profound and epic experience that takes one on a sometimes turbulent journey. By remaining true to a loving and nurturing attitude, I believe healing is more apt to happening than if we approach it with anger. Negativity and anger use up far more energy than love and compassion. So if you are on what you believe is a path to wellness, but all you spend energy on is wallowing in negativity, you are compromising your recovery. 

I have an image in my head of how this process is happening. It's actually more like a blurry memory. When I was a baby, my Nana bought a rocker for me, and she and my parents spent hours rocking me until I would fall asleep. They couldn't just put me in my crib. I had to be rocked. That chair is long gone, but I can imagine myself in it, rocking back and forth and speaking to my body, almost like a lullaby. I offer gratitude to the illness for all the lessons it's taught me. I reassure it not to be afraid to move on. Despite all the obstacles I've had to overcome, I still believe that healing with love is better than healing with hate. In fact, I don't think healing with hate is healing at all, but to each his own.

Under any circumstance, I believe that love is the super power of the Universe. It can empower or humble us. The "Love Theory" is an idea that has flowed from my heart in an attempt to leave positive breadcrumbs for others with chronic pain to follow.  In the grand scheme of things, we can't change certain things, only our reaction to them. My pain is in my life, and part of loving myself means loving my pain. It is a powerful teacher. No matter what the future may hold, love is my inner compass and greatest friend. May you be blessed with the same love in your lives.

Painzilla

Today I officially acknowledged someone I've known for years. Her name is Painzilla (not to be confused with Bridezilla.) On the outside, we look somewhat alike, save the fact that Painzilla looks like small wildlife could live in her finger-in-a-socket hair, and her skin is more pale and pasty than porcelain. Her eyes lack that twinkle mine usually have, and overall she just looks like a mess. She is exhausted, quick-tempered and half-witted. I will tell her story.

There comes a point when pain transforms me into a horrible monster, fed by guilt, frustration and general sadness over my situation. During times when the pain I've dealt with daily either worsens, or is accompanied by excess outside stress, Painzilla emerges from the shadows. She is super-sensitive, and it doesn't really matter what tone is used when speaking to her, because everything is taken as an insult or assault. No matter if you're talking about grocery lists or home décor, Painzilla finds a way to spin the conversation into an argument about nothing. Painzilla's wrath makes PMS look look like kindergarten play.

She feels so sad and alone that watching "Jersey Shore" or "Sex and the City" brings her to tears. Painzilla feels isolated and depressed by her medical woes, and her general lack of interaction with the outside world makes her pitiful and annoying to be around. In turn she withdraws to spare those around her more stress and pitifulness, and THAT withdrawal makes her more lonely and isolated. She feels pathetic. Painzilla is a mess.

Painzilla takes everything personally, because the world outside her brain does not exist when the pain is so horrid. Her pain is like being attached to ten ton weights that drown her in her own despair.  She can't breathe. The air she breathes is pain. The food she eats is pain. The sleep she gets is pain. She dreams about pain. There is no escape.

Her world has been dwindled down to such a small population of family and friends that she has no one that isn't already overburdened to talk to about these issues. She feels guilt for what her pain is doing to her family, yet she gets angry that some aren't being more empathetic, even when that's all they're trying to be. When pain is your life, there isn't enough empathy in the world to calm the spirit.

So Painzilla and I had a discussion today, and while many of the aforementioned issues may remain, she will no longer be handling them for me. I'm making a conscious decision and effort to move toward a happier existence, pain or no pain. That's not to say that the pain won't continue to effect me, but I hope to change the WAYS it effects me. Painzilla is packing her bags. Get your autographs now, because she on her way out.

Running on Empty

Perhaps the greatest challenge in a life of chronic pain is the absolute exhaustion that goes with it.  It's like an octopus wrapping its tentacles around every aspect of your life, sucking the energy out of your mind, body and spirit. It's like a dehydration of the soul. You reach a certain point, and you can't buy your way out of complete debilitation.

Exhaustion from pain goes beyond classic tiredness. It isn't something that can be helped with a nap or a good night's sleep. It encompasses your existence. As pain continues with time, it's hard to be the girl who is too worn out for the family get together, or who has to go to bed early when company is over. It's humiliating, embarrassing and isolating.

When the condition is chronic, you have to learn to be secure in your body's needs. If you need to nap, you nap. If you're too weak to go out, stay home and meditate. It's not easy being on the brink of life, but your body can only do what it can do. Pushing it too hard is only going to set you back more.


When the body hits that wall, you have to somehow tap into an inner source of strength to get you through. Sometimes it's a matter of taking it a week at a time, or a day at a time. Sometimes pain gets so bad that you just have to take it a moment of time, and every second is an accomplishment. It may be a long race, but you have to take it in baby steps.

It's scary to me now, as I can no longer remember what it feels like to wake up and not hurt. I'm not sure when that oasis went out of view, but I truly can't imagine my life before Hurricane Pain hit. At this point, it's about damage control. Acupuncture for my mind and body. Prayer for my soul. Medicine as needed. Doctors when there's something they can do.

Every person in chronic pain has to come up with a recipe to deal with her set of issues and deal with each symptom as it comes. Were it not for my relationship with God, I do not believe I would still be here. He is the set of hands that keeps moving me forward even when I have no more steps in me. When I feel empty in body, mind and spirit, God fills me up.

I can't say that I'm grateful for the pain I'm facing now, but I AM grateful that it's brought me closer to the Divine. He created this finely tuned instrument that plays a unique song. In a sense, I feel like the way I live my life and how I cope with my challenges is like being a composer. Pain can leave you feeling defeated, but you can create some amazing music with your strength, humility and gratitude. Ultimately, I think that's what we're all here to do. Despite our challenges, we're all here to play a song for God.