Thursday, December 24, 2015

Will They Follow?

For those of you who have read my posts in the past, I have an affinity for wind chimes. It's actually a love that was handed down from my mom, both of us finding peace in a symphony of their songs. The more the merrier. On my Nana's deathbed, she promised my mom to speak to her, to us, in our wind chimes. She hasn't disappointed us. There have been times when I've been sitting at my desk writing with the window open, and despite the lack of wind, the chimes have sung. It's nothing short of magical. And while he never got the chance to say it in words, there have been times when it's clear that Nana isn't the only one who's talking.

I lost my son, Gabriel, just five months before Nana passed. I was in my sixth month of pregnancy when his heart just stopped beating. Losing the two of them so close together was a terrible blow to my heart and spirit. Although Gabriel's passing was considered a stillbirth, I didn't get the chance to hold him. While losing Nana was heartbreaking, she had lived a long, happy life. Gabriel didn't even have the chance to get started. I never got to nurture and cuddle him, never got to see him grow up. It's a wound to the heart that will never fully heal, but time has lessened its sting.

My mom and I are currently in the process of moving. The house we're in is the one my grandparents built in the mid 1960's. A week from today, we will be making our transition to a new home, and it will be the first time a Jorgensen hasn't lived here in over forty years. This house has been my residence on and off for more than 10 years, but I've been in it all my life. It will be bittersweet to say goodbye, as it has blessed us with so many great times, and yet it is time for us to move on.

With the move just a week away, my mom and I are up to our ears in packing. Today's goal was to pack up all the wind chimes and garden d├ęcor, including stepping stones and ceramic figurines. Mother Nature could not have given us a better, albeit abnormal, day to work in the garden in late December. After filling a whole box of wind chimes, I started gathering the stepping stones to hand off to my mom. Most of them were pretty easy to pull up, but I came upon several that were literally held to the Earth by ivy. No matter how much I manipulated it, the vines would not let it go.

"They must be meant to stay here," my mom said to me.

"Apparently so," I replied decisively. But my brain was far from settled.

As I glanced around our courtyard, I started to think about what is meant to stay behind in a house, and what is meant to move forward. Every home will contain some unpleasant memories and/or events, and when we move on, I believe we will spiritually be able to leave those memories behind. But on the same token, there are so many amazing things that happen in a house, not just the things we can pack into boxes, but that we carry in our hearts. All of those things will come with us next week as we settle into our new home.

I looked at the huge box full of wind chimes and the tote full of the ceramic garden pieces. They have a new yard and garden to bless with their physical beauty. While our wind chimes are all beautiful in their own rights, it's the songs they play that make them each special. And more importantly, at least for me, it's those very special songs they sing that are the most precious. Just as the Earth is holding tight some of our stones, I began to wonder if the spirits that have sung for us at this home might not want to leave, either. When we leave for the last time, will they follow?

After packing for several hours, my mom and I were each in need of a break. I went to my room and got lost in thought.
Several years ago, I was in the lobby of OSU Hospital after being discharged from a long stay. As I waited for my ride to arrive, I glanced over to the window of the gift shop, and something caught my eye. I saw the tips of angel wings. I saw chimes beneath them. I got out of my wheelchair and found my way into the store to the place where the wind chime was displayed. I literally had to crawl into the window display, as there was only one of that chime in stock. I was in love with it!  Nine years after he died, I finally found a chime that seemed perfect for Gabriel. 
I hung it as soon as I got home. These past few years, I've gotten such great joy from watching it dance in the courtyard, in both rain and shine. And while you may find it impossible to imagine, there have been occasions when I've been down or just missing my son more than usual, and that chime will be the one that sings. Somehow, my baby boy finds a way to talk to his mama from the place his spirit resides. Somehow...
Returning to the present, I started to think about God, and my relationship with Him. No matter where I am or what I'm doing, God finds me. I never have to go far, because He is alive within me. I can say the same about my Nana and my son; ESPECIALLY my son. My Nana lives on in everyone who loved her. When it comes to Gabriel, I carried him WITHIN me from the very start, so I will never have to seek him out. As for the wind chimes, our angels will sing for us in their new home. And that will make our new home feel like Home Sweet Home for my mom and I.
Merry Christmas!

Friday, November 27, 2015

A Host of Blessings

There are times in life when we get the opportunity to evaluate our blessings. Thanksgiving is a perfect time to do so, and I thought I'd share some of mine with you.
I'm grateful...
For these lungs that inhale and exhale with mightiness despite past trauma.  For the scars all over my belly that show how divinely created was my body in its capacity to heal. For more than my share of miracles. I awake each day knowing I'm lucky to be opening my eyes, no matter how much pain I'm in. 
For my four-legged child, the pink nosed, caramel colored chocolate lab, Zoe Isabella, who has seen me at my worst, yet continues to walk alongside me every day. There is an unspoken language between us. The moments when she looks me in straight in the eye are treasures.
 For my nephew, Ethan, who amazes me with his ingenuity and artistic ability far beyond his years. He dazzles me with his knowledge and melts me with his smile. I love him more than mango smoothies and clear blue skies.

For my nephew, Eli, who is tender and sweet. His empathy far exceeds his years, and his humor generates laughter from all ages. I love him more than peanut bars and rainbows.  
I never thought I'd get another chance to love someone or something with such intensity and heartrending magnificence, and here the Universe gave me TWO such opportunities.
For the angels of loved ones who have passed. From the unborn to the almost ancient, I have been blessed with protection and love; encircled with those who speak loudly in whispers. For Gabriel, Mommy misses you. You are with me every moment...
For my family whose support and love ground me. My parents for giving me life and love. My brother, Keith, for his strength, wisdom and friendship.  
For Keith and his wife, Sonja, who made me a YaYa.
 For my 91-year old grandmother, aka Mimi, who is the spunkiest "Old Polish Chick" around.
For my extended family who have all enriched my life and loved me unconditionally. And for the extended family I've come to know from Sonja's side. They are all precious, each and every one.
For my friends, who are family by choice. Each one enriches my life in his/her own unique way.
For Donna Jorgensen, my mom, best friend, roommate, soul sister, occasional nurse and overall partner in mischief. She knows my heart better than anyone. Thank you for being my person..
Most of all for the God! I can't imagine life without my faith being at its core. Everything above is because of the love and generosity of the Divine.
Life has its ups and downs, but it's all a gift in the end. Even our hard times, our tragedies, our heartbreaks have the capacity to teach and strengthen us. Over the years, I've tried to find the positive in my pain and have tried even harder to be grateful for it. 
Even in our often tragic, misguided world, there is so much beauty. Soak it up and store it in the recesses of your spirit like a chipmunk collects nuts and stores them for winter. When your pain comes, in whatever form(s) it does, nourish yourself with the splendor you have accrued until the sun shines upon you once again.
I have SO many blessings. I think of those who don't have homes on cold nights, food for hungry bellies, medicine for sickness, and most of all, LOVE! That is the greatest gift ever, and I'm grateful to be marinated in it.

I'm grateful for each one of you who are taking part of this written journey of mine. My wish is for you all to be marinated in love, too.
Happy Holidays!

Tuesday, November 17, 2015

Looking Back, Looking Forward

I cannot remember a time when I didn't write. It is as part of me as any body part. From the beginning, my Nana (maternal grandmother) was my mentor, my spiritual guide, my dear friend. She was a writer, although I don't recall her ever teaching me how to write. I believe you can teach people the fundamentals of grammar and the rules of writing, but creativity is part of the soul. Our writing is so different, yet similar at the same time, and I see so much wisdom in her words as I look back at them.

Last Friday, watching the terror unfold in Paris, I was paralyzed with sadness for the victims and their families. On a greater level, I was stricken with almost paranoid fear for the future of our World. Survivors reported hearing terrorists saying "Glory be to God"(in Arabic) as shots were fired at innocent civilians. I find no glory in bloodshed and murder, in killing and hatred. I cannot imagine a god, any god, seeking such horror in its honor. Especially not the God my Nana helped me discover; the God she so often honored in her own writing. It's at times like these that I'm thankful she's no longer living to see these atrocities.

Although it has no name, there is a war going on. It spans the globe, and its rooted in our hearts. Sweethearts, dark hearts, crazy hearts. We all bleed the same blood, but it's the robbery of blood that makes me ill. The lives that were taken so savagely and remorselessly belonged to people who breathed the same air as the killers. Both killers and victims came from a mother and father who came from a mother and father. For what is considered the First World, this is a barbaric display of inhumane disgrace.

When my Nana self-published her book, "A Potpourri of Love", she included several pieces written about the Vietnam War. My uncle, Denny, Nana's oldest child and my mom's big brother, flew helicopter gunships, and while she supported her son, she despised the war. She despised war period. When I was thinking of writing a post about Friday's atrocities, I found myself dialoguing with Nana in spirit. I wondered how she would have expressed her disillusionment with the recent brutality in France. Looking through her book, I found piece that expresses a lot of what's in my heart, so I am sharing it. While it has been almost half a century, her words span the decades.

I have two sons who are precious to me.
They're not at war, but they soon may be.
Would I have them defend this beloved land,
And all those things for which it stands?
Of course I would, there can be no doubt;
But IS 'defense' what war is all about?
I wonder: IS war the answer to our plight?
Does fighting and killing turn wrong to right?
If we've made such a miserable bed,
Must we lie in it 'til we're ALL dead?
Spanking may stop a naughty child,
But why is he naughty; why is he wild?
Aspirin may stop an ache or pain,
But correct the cause, or it comes again.
CAN we end the cause of war,
The harvest of misery we all abhor?
It seems we've been shown a better way
By one whose birthday is Christmas Day.
But whatever we believe about the virgin birth,
Who can deny this great one's worth?
Somehow we've failed to do THY will;
Ignored the command, "Thou shalt NOT kill."
We've been taught much that is surely true;
That we prove our faith by what we do;
That God loves the WORLD, not just a part;
That all walk in darkness who've hate in their heart;
That peace begins within you, and me;
That we choose to fight, or choose to be free;
By seeds we sow each day of our life;
Each moment we add to the peace, or the strife.
Remembering these things, I seem to recall
The times I didn't believe them at all,
Each time I said an unkind thing...
Was I helping the bells of freedom ring?
When I listened to gossip and suspected the worst,
Was I really putting 'Democracy' first?
If I judged a man by his color or creed
Was I serving the cause for which men bleed?
If I reserved smiles or words of praise
For those with status or pleasing ways,
Was I seeing that inner spark Divine
That lives in all men all of the time?
When I was sad, or gave in to despair,
Was I having faith in Our Father's care?
When I refused to swallow my pride
Was I being led by my "Inner Guide"?
When I thought I had done something good,
Was I directing the credit where I should?
All of these things, and so many more,
Challenge my soul, in the face of war!
For in every war-scarred face I see
My own dear sons looking at me.
Could I be failing these trusting young men
By resisting the challenge again and again?
Our money says, "In God we trust"!
But do we really? Can God trust us?
Tho I can't stop this terrible war,
With God's help I need to do more,
Not to keep my sons from going,
Perhaps more 'heart' will do the trick,
For isn't THIS what makes us tick?
This may seem like an abstract answer;
Like a miracle cure for a terminal cancer,
But if God is Love, and Love is of the heart,
Then Heart IS needed to illumine the dark.
Ending the war WITHIN MYSELF,
Taking thoughts of love down off the shelf,
Armed with kindness, instead of a gun
Is the only way 'my' war can be won.
Measuring each deed, each word I say,
With the Golden Rule, every day.
Only then can I feel free
When the face of misery looks at me.
~Mary Anzaletta Robinson Long (Nana)
I learned so much from my Nana. She truly believed that progress and peace began from within, and she led by example.  During the Vietnam War, she was tormented not just as the mother of a soldier, but as a citizen of the World.  But Nana was concerned on an even greater level. It was the cause of war, ANY war, that scared her. To her, hatred and intolerance were as lethal as the weapons that were fired from my uncle's helicopter. And she was absolutely right. Those two things greatly contributed to the attacks in Paris. Nana's been dead over a decade, but I could feel her tears that night. They wet my face as much as my own tears.
The global community is bleeding. There are so many wounds, it's hard to know where to begin. As a woman with chronic pain and illness, I get overwhelmed balancing all the doctors and surgeries, the medication and the appointments. Then I take a step back and look at all that's going on in the news. All the attacks and wars, the victims and attackers, weave a complex and heartbreaking reality that seems hopeless. How does our World heal?
There are no immediate answers. For my own sadness, I turn back and find the unconditional love my Nana left in word and spirit. No matter her emotional or physical pain, she taught me that peace began within. It wasn't something that could happen overnight, but rather it was something that took daily meditation and prayer. I remember many bedtime talks when she'd babysit my brother and I. She used to tell me that peace began with me. Looking back, I think she was brilliant. Peace does begin within each of us. And when you combine the peace within yourself with the peace within another person, and another, and another... then peace MIGHT have a fighting chance amidst all this madness.
I'll leave you with the bedtime prayer she taught me growing up. It's a spin off of a mainstream Christian bedtime prayer many of you probably know.
Now I lay me down to sleep
Into your arms,
Dear God I creep
Thank you for your love and care
And for your power that's everywhere
Make me shine God, just for you
In all I think and say and do

Friday, November 6, 2015

Amazing Machine

Some of the most precious things I've learned in life have come from my experiences with my chronic illness. That may sound odd, but one of the ways I've learned to survive with a body in crisis is by gripping tightly to a positive attitude. It keeps me afloat. When my mindset falls into sadness and depression, which is sometimes a reality for me, I find it's much harder to stay afloat in the waters of the deep, dark sea of chronic pain.

Yesterday I had a procedure to open my esophagus with a balloon passed into my stomach with a scope, also known as a balloon dilation. It's my tenth one this year. Because I've been on pain meds for so long and have had so much anesthesia for countless surgeries, my tolerance is very high. My surgeon is usually able to sedate me well enough, although there have been times when I've been able to feel the entire procedure. Unable to move, I've just had to lay there and endure something that will allow me to swallow without choking (at least for awhile.)  In the beginning, the dilations have lasted six to eight weeks, but the relief period has been dwindling to sometimes just a few weeks. 

With my usual surgeon booked for weeks and then leaving for vacation, I had to practically beg for another surgeon to perform the procedure. Initially, the anesthesiologist told me I would just have twilight sedation, where I'm asleep but not totally out. I signed the consent. The surgeon showed up an hour later, and I instantly liked her. She looked me in the eye, explained the procedure (I could probably DO the procedure, but bygones), and then she asked if I had signed the consent for general anesthesia. I told her I'd been told I would have twilight sedation. She shook her head. As I was rolling down the hall on the gurney, the surgeon was telling the nurses to pull the appropriate drugs to intubate and put me on a ventilator.

My heart began to race. My family had gone to the waiting room, and I was scared. I've been intubated numerous times, but this felt different. I hadn't had time to prepare my mindset to see this as just another way the doctor wanted to keep me safe. She knew my high tolerance to anesthesia, and she knew that my already weakened lungs weren't always strong enough to breath on their own. She didn't want me to be awake, she didn't want me to suffer, and I appreciated her time and care. Sometimes these procedures felt like going to a fast food drive through. You're in and you're out. Yesterday, it felt like a sit down restaurant. As scared as I was, I felt like the surgeon was looking out for me. That was the last thought I had before falling into a deep sleep.

I awoke in a lot of pain, so nauseous I could barely shake my head. My throat hurt from the breathing tube. I was in a recovery room reserved for patients who'd had general anesthesia. I had two nurses beside me, one giving me nausea medication and one addressing my pain. My breathing was normal, but my diaphragm was sore. I lay there and slowly woke up. Once my symptoms were under control, I was taken to another recovery area where I would see the doctor and be reunited with my dear Uncle Denny who had escorted me yesterday. He hadn't been told I underwent general anesthesia and had been concerned. The doctor came in and smiled at me.
"We were able to open your esophagus with the balloon. It was definitely tight when I tried to pass the scope through to your stomach," she said.
"Thank you for everything," I began. "I was scared about being on the ventilator, but I appreciate you looking out for my breathing!"
"Of course. That's what we're here for. Hopefully you'll have some relief. Unfortunately, I'll probably see you again soon, since this isn't remedying itself."
She smiled one last time, and walked away. I was left to get dressed. All the drugs my body had been given were causing different symptoms. The smell of the sleeping gas  remained in my nose. One of the nausea meds always made my muscles tense. I was seemingly functioning, but secretly drunk. It was like TGIF Happy Hour, not Thursday afternoon. My uncle took me home, and my mom cared for me last evening. I fell asleep on the couch, laying with my pillow on her lap. There are some times when you just need your mom. She can fix things better than anyone.
I began writing this around 4:30 am. I awoke an hour earlier, dealing with side effects of a few if the drugs I'd been given; specifically the one the helped to wake me from anesthesia. I'm exhausted, but wide awake. Looking back, I was able to see yesterday for what it was; a parade of ways medicine, in all its scopes, is able to work with the body during times of struggle. The anesthesia made me sleep while the ventilator helped me breathe. The meds used to wake me helped me burst out of the fog of Neverland, and my recovery room nurses helped me combat unfortunate side effects invading my body. It was a marathon of care, and I was blessed by those who ran it for me.
Our bodies are incredible machines. Each time I go into the hospital or have a procedure, it amazes me the way the body copes with quite stressful situations. Little balloons keep stretching my stubborn esophagus, and the blessed thing just endures it. As with anything, there are risks with the procedure, but the team of surgeons and nurses at OSU work diligently to lessen those risks with their complete attention to each detail.  As I was wheeled to the car, I passed all different kinds of patients. Those with IV poles dragging beside them, in wheelchairs with amputations, with new babies in their arms going home for the first time.
It's easy to take for granted even the seemingly smallest functions of the body, but each part of us is part of a greater whole. We are the greater whole. Treating our bodies with respect is the least we can do for this incredible machine that escorts us through life. I just took a sip of water, and the fact that it went down without aspiration or choking is a practical miracle! Even with all of its issues, my body is a gift that shouldn't be taken for granted. Sometimes it angers me when I hear of people abusing drugs or alcohol, acting recklessly, endangering themselves to certain environments. It's like throwing away a golden egg, disrespecting the most precious gift God can give.
I wish I could go back to the last day my body worked without the 24/7 oxygen and balloon dilations, the surgeries and medications, especially without the pain, and live it over again. I wish I had known to ENJOY that day more than any other, because it was the last day of being authentically me. But I can't do that. I've had organs removed, have scars all over my body, require medication to live with tolerable pain.
I'm no longer the original Jessica. I'm the new and improved Jessica, because after everything I've gone through, I am more in awe of my incredibly strong body and precious life than I was before all this happened. And each procedure or trip to the ER grinds that point even deeper into my DNA. Even broken, my body is an amazing machine, and I am grateful for everyone who has helped keep me together after all these years. The journey is more important than the destination, and my journey has given me hope, love, and gratitude from deep within. Your body is precious, too! Act accordingly.
I'm grateful to everyone who has helped put Humpty Dumpty back together again.

Friday, October 30, 2015

Liquid Splinters

My tears have been flowing much more freely of late.  I've recently determined there are two types of crying. There's the cleansing, cathartic cry that gives old thoughts wings, and there's the tortuous, unproductive cry that torments your soul. I've been stuck in a retrospective period where I look back and wonder if, had I taken a different job or stayed with a certain boyfriend, my life would have turned out differently. Would I still have gotten sick? Would I be married by now? Would I have children? Would I have been spared the terror of losing a child? The "what if" game is dangerous and painful, and my mind has been playing it more than I'd like of late.
My writing is the ultimate therapy and escape for me, especially when I'm being haunted by memories that I can't change. It's my way of purging negative thoughts, of freeing myself from the "what ifs". Somehow, releasing them on paper, combined with the cathartic emotional release I experience, weaves what I hope are helpful, proactive thoughts for others to grasp as they cope with their own issues. Unfortunately, it's not something I can force. If I'm not inspired, my creativity shuts down. The lights may be on, but no one with an ounce of inspiration and productivity is home.
One thing that can help inspire me is music. I make play lists on YouTube of songs that take me back to certain times in my life, or that remind me of difficult times. My mom was listening with me the other night, and she commented that most of the songs are sad. I guess she's right. Most of them do pull on my heartstrings, but that's the way I make my own music. Diving back into the deep end of difficult times reminds me not only of my strength, but of my survival of things that should have taken my life.
Swimming through the sometimes dark, murky waters of my past inspires me, reminds me that I can overcome whatever challenges me with God's help. It humbles me that I've been chosen to continue on this path, difficult as it may be. I'm still walking. I'm trying to hold my head high. Music acts like a magnet, drawing out my tears like the emotional splinters they are and gives me the chance to purge hurtful pieces of my past that I didn't even realize were there.

There are times while writing when I can't stop the tears from falling. They can be rough and sharp as they hit my cheeks and trickle down my face. They're pieces of my past that have been buried so long and so deep, only to finally be freed by music that takes me back to the moment it first burrowed into my soul. Crying isn't always a bad thing. Much like the rain nourishes the Earth, tears nourish the spirit. They wash away the past and feed the positive aspects of your soul's library of feelings and memories.

Of the many things I wish to accomplish with my writing, I'd love to inspire tolerance among readers. We all have our battles, not one more serious or difficult than another. Each struggle is relative.  Rather than fighting about our differences, why can't we unite in our similarities? We all bleed the same blood, cry the same tears. Their causes may be different, but not one person is exempt from them.
Change happens one step at a time, and the past is healed one tear at a time. There is no perfect recipe to overcome that which ails us. In my own life, I'm accepting my tears as a sign of growth and change. I can't evolve as an individual if my heart and mind are crowded with dark memories and regret. Music is a magnet for my emotional splinters, my writing is the way I weave past mistakes into healing and God is there to wipe my tears.... yesterday, today and tomorrow.

Friday, October 23, 2015

The Me That Used to Be

It's been an interesting summer. While I continue to deal with major medical issues, I'm nowhere near as sick as I have been in recent years. My body is holding together the best as can be expected with all it's dealing with. It's my mind that's struggling. I've been having night terrors, lots of anxiety and my mind, while crystal clear, is too overstimulated to focus on my writing. At least not as much as I'm used to. It's just another phase on this ongoing journey with my health.

In an attempt to help my mind through this time, I started seeing a psychologist around the end of June. The first few visits were spent filling in the blanks of all she would need to know. I suppose I was riding a cathartic high of vocalizing all my demons. After the second visit, the tenor of my appointments changed. She had heard only a fraction of my health and personal history, but it was enough for her to provide helpful guidance.

The day before my third visit, I found an old picture of me that I barely recognized. I was thin, beautiful, and made up like I used to enjoy being. I remembered when it was taken, knowing it was right around the start of my last relationship... ten years ago. It felt like a kick in the gut. I look nothing like the girl in the picture, and it depressed me beyond belief. I stuffed it in my journal and tried to forget it, but I couldn't.

Going into my appointment, I hadn't expected the picture would be a topic of subject, but it was. I told her that I found an old picture of myself that I barely recognized. It looked and felt like a lifetime ago. Before I knew it, my face was wet with tears. She asked me what had made me so sad. I said, "I don't know where that girl went. I don't recall when I lost her, but I don't think she's coming back."

I started to come to grips with something at that session. The me that used to be is no longer.  I don't know how she could be after all that's happened with my health. Thinking of the picture, it's like she, with all the dreams she'd always had, is dead. It was before the oxygen, before all the scars, before I became a practical shut in due to my poor immune system and overwhelming anxieties. It was before I became a slave to disease, lost my social life and before I forgot knowing what it felt to be loved by a man.

It seemed like so long ago, almost like another lifetime. In a way, it was. I hadn't realized just how much had changed; how much I had changed. How much I'd lost; the career, my son, my dreams for a family of my own. As I started to process all these memories, the tears came, and my counselor gave me her astute assessment of what I was going through.

"You're mourning your former self. Mourning all you've lost over the past 16 years of chronic illness. You've spent so much time coping with your immediate physical issues that you haven't grieved what you've lost along the way. This is a stage of coping with loss, and you've lost plenty."

For the next few weeks, I cried my way through my sessions.  I started to understand a little more about my anxiety. The mind can feel unstable when it's in the midst of a tug-of-war between what was and what is. It's hard to stop wanting the life you'd always wanted, even though you know it's near impossible. Even if I could get pregnant, which would be a long shot, how could I be a good mother when the pain makes it hard just to get out of the bed some days? And what kind of man is going to want to be with a woman with all the health issues I have? It's not an easy life. I've had to  accept it for myself, but I can't imagine any man wanting it for himself.

My therapist is so patient, but she will challenge my logic. When I talk about longing for a man, including love, intimacy, and sex, I often make it sound like an impossibility. It isn't just because of my health issues on the inside, but also the oxygen I wear on the outside. That's not something I can hide, and it's definitely not sexy. But when I start on the self recrimination, she will ask how I can make the decisions for men I have yet to meet. I guess she has a point. Anything is possible.

I'm still in therapy, and I continue to struggle with my physical health. I picked up my journal last week, and the picture I'd stuffed in it dropped to the floor. I bent over and grabbed it, staring closely at the woman that was. Yes, she was beautiful, but there was something I hadn't noticed. Her eyes looked dead. I cringed, remembering there was a time when my pain medicine had more control over me than I did. It made me zombie-like. I spent years being overmedicated, either at the hands of my doctors or by my own. There are years I don't recall, so sedated I had been that only fragments of memories remain.

Chronic pancreatitis has the reputation of causing some of the worst pain known to medicine. It could rip me apart, cut me in two, cripple me to the point that nothing but the fetal position was tolerable. I had been so terrified anticipating the pain that was to come that I'd take extra pain medicine to ease the onslaught. I'm NOT proud of that tendency, but I have to let regret go. Every moment I spend regretting or incriminating myself for old behaviors is a moment lost. They are moments I could instead spend being grateful, joyful or simply at peace.

I laid the photo down and looked in the mirror. My eyes were clear. I went through some recent pictures, and my eyes were alive and sparkling. I started to think about the things I liked about myself. I thought of my inner strength, my spiritual awareness, my empathy for others. I thought of my courage in the face of stress, my positive attitude, my crazy sense of humor. I may not be the me that used to be, but my therapist has helped me see that everything isn't lost. There is still so much to be grateful for, and my inner strength continues to help me face my physical trials and tribulations with spunk.

Grieving what was is helping me move forward to the woman I have yet to become. The possibilities aren't endless like they once were, but are enough to make it worth the investment of my heart. I'm fortunate in so many ways. I have the unconditional love and support of family. I've got two nephews who help fill the void of not having children of my own. My body has lived through serious illness and desperate situations. I have a home, I have food, I have a bed, a precious dog. I have much more than most.
I often feel guilty for feeling down about my health, because I AM so lucky. My therapist told me there is no need for guilt. I can be grateful, yet heartbroken at the same time. One doesn't cancel out the other. Loss is loss. I've lost years to my physical battles. I've lost love, romantic and maternal.  It would be abnormal NOT to feel down now and then. There is a hole in my heart that is slowly being filled with the love and experiences I'm gaining as I move forward.

The body and mind heal differently. I've realized that emotional healing is a process of changing ones perspective of ones physical reality. And it's fluid, ever changing as the body and spirit evolve through life's many adventures. Life doesn't always turn out the way you thought it would. Mourning the changes between what was and what is can be as important to the mind as a medical procedure is to the body. Sometimes life takes a different direction, a different road. It doesn't have to be better or worse than what was, it's just different. I'm just happy to have survived all I have so I can walk down the path God continues to lay before me. On the horizon, I see the me that will be, and I look forward to becoming her.

Monday, September 28, 2015

The Wheels on the Bus..

This post is rated NC-17. Those of you who don't like a few well-placed bad words, who don't want to be sad or upset would be better NOT to read what follows. I make no apologies for writing raw emotions. No judgment if you choose not to proceed. I'll never know. I'd humbly request the same in return. I'm just giving you a heads up. This is a heavy one....
There is something very broken inside of me. In fact, my insides feel like they're the porcelain remains after a bull's visit in a china shop.  The pain I feel on a regular basis, the same pain that requires steady pain management and greatly limits my activity, is overwhelming on a normal day. In the last week, I've developed pain that has paralyzed me. It's in a different area and of another nature than my norm. I'm so scared that my already intense pain has permanently turned into something even worse. I'm a slave to its depth. 
Saturday night, I ended up in the ER with an incapacitating pain that has only been occurring in the last five days or so. My pulse was through the roof, I was shaking with chills, while at the same time sweating through my clothes. I felt like my insides were being boiled. I had started retching bile, unable to vomit because of my esophageal issues. Even water was making me horribly nauseous.
Everything was moving in slow motion. I couldn't focus. There were periods I don't recall, as I was practically passed out from the intensity of it. It felt like someone was grinding a thousand-pound stone into my lower right abdomen, with frequent surges of even worse pain that I can only describe as feeling like a Charlie horse in my pelvis and into my back.
I was taken right back to a room despite the busy ER. The doctors were pretty convinced it was appendicitis, and I was given pain and nausea drugs through an IV while I waited for my blood work to come back. It was all normal. They made me drink a bottle of contrast before putting me through a CT scan. Nothing showed up. I was released and told to follow up with my doctor.
The pain was somewhat improved, but still an 8 out of 10 on the pain chart. I had to fend for myself until Monday. They told me if the pain and nausea continued that I should return to the ER. That's logical.  It's only the tip of the bullshit iceberg.
Lately, I've had night terrors that just recreate my physical reality. The emotional and physical pain is palpable. They're almost always about my health and/or the loss of my son. When I'm awake, I seek sleep to escape the pain, but it follows me and saturates every moment. When I'm asleep, my dreams chase me back to consciousness, as the pain is just as real.
I tried to nap Sunday afternoon. I hadn't slept the two previous nights. The dream I had still gives chills. I dreamed that my current pain was just as bad as in reality, and I had to try to achieve all my hopes in life in one day. I had to fly on a small plane from one thing to another; achieving love, having a child, establishing a career and getting to my grandmother, who is currently doing very poorly. I only had four flights to achieve them all.
I was on one of the flights, and I couldn't breathe. (I'm on oxygen, so this is super scary.) The pain saturated all the air in the plane, and I knew I wasn't going to reach any of my aspirations. I knew I was going to die. I couldn't breathe, because the pain was suffocating me. It was slowly swallowing me whole.
I awoke from my nap gasping for air like a fish out of water. My mom was next to me on the couch, and when I awoke so distraught, she asked my dream. I proceeded to tell her, and I just broke down. My cries didn't even sound human to me. It was gut-wrenching, soul-quaking sobbing coming from my mouth, my lungs, my traumatized spirit. I was a wreck.

I spent the entire night wide awake, despite being exhausted. The pain was grinding away at my body, and the night terror was grinding away at my spirit. I fell asleep sometime after 4am, passed out in the fetal position from exhaustion.
Again, I awoke gasping. More bad dreams. It was around 10am. I called my head surgeon's office and left word with his assistant Laurie to please have him call me back. My pulse was beating so hard, I could feel it in my temples. I couldn't handle the noise from the TV, the radio, the internet. I just laid with the heating pad, praying for the strength to get from one moment to the next. At 11:41am, my phone rang.
"Hi Jessica! This is John, and I'm a nurse case manager with the department of trauma and general surgery. I saw you called the office this morning, and I'm aware you were in the ER this weekend. How are you doing?"
"You're with Dr. S's office?" I asked.
"Yes. Laurie told me you called. How are you doing?"
"Honestly, John, I'm feeling pretty rough. While my pain isn't as intense as it was on Saturday, I'm barely able to get out of bed. My regular pain medicine isn't touching this pain. My pulse is high, my BP is high, and I'm trembling. I honestly don't know what to do."
"Well, it looks like your blood work and CT scan were normal, so they didn't find anything to treat at that time."
"Yes, John, I'm aware of that. But this isn't imaginary pain. It's very real. The ER doctors agreed. They just didn't find anything to fix."
"I see you have a history of adhesions from all your surgeries. They can work themselves into kinks and cause spasms and pain. Eventually, they might work themselves out. Keep using your home pain regimen."
"This isn't working itself out, John. I can't get this pain under control."
"The problem with chronic pain is that you develop at tolerance to medicine if you've used them awhile."
"I'm aware. I've had chronic pancreatitis for 16 years, and I've required pain medications to treat it. My body unfortunately has a high tolerance to even the strongest meds, and what I'm currently on isn't touching this new pain."
"Perhaps you should return to the ER then."
"Why would I return to the people who told me to leave and call your office?"
My line is beeping in, but I don't want to interrupt John.
"Well, my only other suggestion is to keep following your pain management at home. If it doesn't get better, and you have an opening in your schedule, you should call Laurie and see if you can see Dr. S."
"John, I don't have a schedule. Right now, I don't have a life. And the pain medication I take is for something else, and it isn't helping this new pain AT ALL! I called Laurie, and asked that Dr. S or his assistant call me. And instead YOU called me. And now you're telling me to call Laurie back or go to the ER?"
"Yes, those are my suggestions for now. You should really call Laurie.  I hope this helped a little."
"OK. Thanks for calling John. I'm going to call Laurie back. Please overlook that and don't call ME back. We've exhausted this perspective. I appreciate your time."
I ended the call, and took a deep breath..

I'm waving the white flag of surrender, or in this case, defeat. It's like going in circles. I'm in so much pain, I'm beyond exhausted, and yet I have to hit the proverbial pavement running to figure out what's wrong with myself. I have to be my own advocate, because if I don't, I'll just keep getting worse. I felt so helpless and lost! I needed someone who could tell me what needs to be done and how it can be accomplished. 
It's one of the biggest problems with our medical system today, specifically with treating chronic pain. Doctors tell you if the pain continues or gets worse to go to the ER, and then if the ER can't find anything immediate, they send you home. You may get a dose of pain meds here or there, but it just ends up being wasted energy that only defeats you more when you're already in the gutter. And yet, as you walk out the ER door, they tell you to come back if you're not better. I want to ask, "THEN WHY AM I FUCKING LEAVING?"
All this is going through my mind, and it hit me that I had missed a call while John was gracing me with his wisdom. I listen to my voicemail.
"Hi Jessica! This is Annie with Dr. S's office. Laurie gave me your message. Call me back."
The one person I needed to talk to I had missed because I was talking to the wrong person. Gripping my heating pad like the flotation device I wished it could be, I called back and got Laurie. She connected me to Annie, and I had a mother-load of a breakdown on the phone. She listened, put me on hold for two seconds and then told me that Dr. S would see me during his lunch tomorrow. This man is my hero.
We talked a bit, and she was asking me what I use to treat my pain. I told her.
"Unfortunately, Jessica,  with pain medicine, your body develops a tolerance after awhile. Have you tried a heating pad?"

...... go round and round, round and round, round and round. The wheels on the bus go round and round, all the live long day.