Desperately Seeking Jessica : The Promise

Desperately Seeking Jessica : The Promise:

The Promise

When I was in high school, I suffered from an eating disorder. I felt emotionally bankrupt from a variety of things, not the least of which was from being sexually molested by a man who I babysat for and the fear of being raped because of his advances. I didn't tell my family for three years, as I loved the kids and wife so much, I was afraid I wouldn't be allowed to return once my parents found out.  

I had no control over the situation, so I chose to control the one thing I could, which was my diet. I starved myself, and then if I did eat, I would make myself purge. I wanted to feel as empty physically as I did emotionally, so I abused my body and let it atrophy in the face of my heartache. 

My family never knew until several weeks before I went away to college, when I told my mom over lunch what I had been doing. She almost kept me from going to school, but I promised her that I would never purge again, and she cautiously agreed to allow me to go forward with my college plans.

My first week at Miami University, I found myself hovering over a toilet, having purged the cereal I ate for dinner. I ate cereal for all of my meals to restrict my calories. Anyway, with eyes watering from my violent liquidation of food, I stared at the bathroom floor tiles, thinking to myself, “You couldn’t even keep the simplest promise to your mother.” 

I knew in that moment that I had a serious problem, and the next day I sought help through campus counseling. I began intensive therapy with a graduate student, one of the best counselors I’ve ever had, and she helped me come to terms with the reality of my issue. I had to finally cope with the pain after years of sexual abuse and actually FEEL the emotions I had refused to confront for so long. Between a support group and counseling, I finally learned how to process my emotions without taking it out on my body. 

I no longer needed or wanted to make my body the same emptiness I had felt in my spirit, which was finally on the mend. It was a turbulent time, but I learned so much about myself and the nature of pain. I never dreamed that I would reach a similar point many years later, but I did with the onset of my disease.

When I initially got sick at 22 with first gallbladder disease, and then chronic pancreatitis, my body felt physically bankrupt, and my spirit felt the same.  When your body is stripped of all strength by the intensity of chronic pain, and the pain has stolen everything you have, it feels like a form of starvation. No matter how many specialists whose expertise I sought, they couldn’t fix me, so they fed me pills. Those opioids were like comfort food to my suffering body and mind.  When you’re starving and you’re offered food, you eat; sometimes to excess without realizing it, because it hurts so badly. 

As the disease got worse, the same amount of food wasn’t filling me up, so the doctors fed me more. And suddenly I found myself stuffed to the gills, but the hurt continued. No amount of “comfort food” would help, because my tolerance for it has gone up with time.  And finally I just couldn’t eat anymore without getting sick, my mind and body dependent on substances I never imagined being a part of your life.

I found myself back at the beginning, emotionally and physically bankrupt.  To continue to eat would have meant compromising me; mind, body and spirit.  I had become so tired of eating and still hurting that I put myself on a crash opioid diet. The point had come where my pain wasn’t being touched by the drugs, and my spirit was crashing. Instead of letting myself fall even lower, I stopped my opioids to save my soul. And now that I’ve thundered through my withdrawal date, I find myself with no appetite for the agonizing numbness of chronic opioid use. 

To be clear, not everyone on opioids gets to the point I did. Many chronic pain sufferers NEED their pain meds to allow them to work and function. For me, the opioids had the opposite effect, and my life has been void of any real purpose for almost nineteen years. I am looking forward to getting back to life now that I have a clear head and my body back under my own direction.  I dare not say control, because I don’t know if we can ever truly have complete physical or emotional control over ourselves. Some things are left to God and the Universe.

Without the opioids, I’m feeling more like the Jessica I found on the beach.  The fire and feistiness have returned full-force, and I actually have to rein her in a bit, as her passion tends to bubble or even boil over rather quickly. My pain may have returned to a degree, but it’s less now that I’m learning other ways to satisfy it. The comfort food I was offered for so many years just didn’t help anymore, and so I had to make the decision to help myself. And ironically, the pain is less now that I’m awake enough to soothe it with other lullabies, singing to it softly without the drugs. My life is better, and I am grateful.

Until recently, I never realized the correlation between my eating disorder and my opioid use for chronic pain. With my eating disorder, I literally wanted to disappear and no longer feel the pain of this life. With my chronic pain, all I wanted to do was disappear from the reality of the agonizing hurt. After so many years, I became emotionally inclined to take my life, because I couldn’t imagine living like I was anymore, a physical and emotional vegetable. There are so many similarities. Many people don’t understand the dynamics of the two. Eating disorders are all about control. With chronic pain and opioid use, it’s all about what’s controlling you.

My desire with my blog is to draw pictures with my words to help other understand the plight of the pained better than is currently understood.  Those with chronic pain did not cause the opioid crisis, but they are being punished by the crackdown on policy. I’m just so thankful to have found a way out of MY crisis, and to have found the courage to face my pain, even if it is unpleasant. It’s that strength that drives me forward, and I look forward to finding even more ways to soothe the pain so that I can return to a productive life. 

I go back to the promise I made my mother before I went to college. In essence, it was about no longer hurting myself.  Ultimately, that is why I stopped my narcotics. They were hurting me, and I was on the brink of hurting myself even more. Thank God for the strength and understanding to pull myself from that ledge, and to be able to stand strong before you as the TRUE Jessica once again, now opioid-free.

CHECK OUT Tracy Chapman's "The Promise".....

https://youtu.be/XcfswBZpSBU

Desperately Seeking Jessica : The Legacy

Desperately Seeking Jessica : The Legacy: Tuesday night, I had both the privilege and the heartbreak to attend a prayer service and calling hours for the father of two dear frien...

The Legacy

Tuesday night, I had both the privilege and the heartbreak to attend a prayer service and calling hours for the father of two dear friends. His death a tragedy, not an illness, this man was the patriarch of his family, coming to America in 1970 with his wife and first two children from Peru with just $100 in his pocket. Over the years, family followed, and his home was open to them as they made their ways as new Americans. Working two jobs in the beginning, he went on to establish multiple businesses, including two restaurants, Garcia’s and Jack and Benny’s, where his family worked together to make them a success.

Listening to those who loved him, sharing stories and memories of this dynamic man, I was brought to tears by the thought of the legacy he has left behind to his seven children, numerous grandchildren, many nieces and nephews, great-grandchildren and many other family members.  The overwhelming sentiments of those who spoke were about his happy nature and the love he extended to his family and friends. They had less to do with his accomplishments, and more to do with the qualities of the man who accomplished them. They were about family and love, forgiveness and forget, happiness and pride. The service wasn’t about what he had, but who he had and who he was as a person throughout his amazing lifetime. With such a large family, his legacy of love will live on for many generations to come.

The ceremony made me think about the legacy I will leave behind when my time comes, hopefully a long time from now. I don't have any living children, but I have two nephews who I adore, and who I hope will have families someday who I can adore, as well. For their entire lives, I have been chronically ill and dealing with chronic pain. Their YaYa has been known as being sick, which is far from what I want to be remembered for. I've never seen them through drugless eyes, although their vivid personalities have made precious impressions on me despite it. I don't know if I honestly see them any differently now that I am off my pain medications, but I'm certain they see ME differently now that I'm more awake, aware and engaged.

Coming out of my opiate haze has been a long and arduous process of weening from prescription opiates that were my saving grace for nineteen years. I don't pretend that it's THE answer to chronic pain, but it's my answer for as long as I can cope with it. Going forward, I want my life to be defined by who I am and what I do with what I’ve learned, not by the illnesses I have and the symptoms therein. For so long, I've been known as the "sick girl", and the name has fit the situation. Now free of my opiate coma and inability to cope with my feelings, I can see the forest through the trees. I can see Jessica for who she is, not what she has, and it's been an important boost to my self-confidence to feel like something more than a "sick girl" in my own eyes.

The legacy I want to leave behind will be what I become now that I'm in a place to help others. I want to leave behind a legacy of advocating for those with chronic illness, of fighting the stigma of chronic pain, and hopefully someday, providing a place for patients with opiate dependency as a result of such illness to withdraw from their meds without having to do it largely on their own as I have. I want my nephews to remember me not as their sick YaYa, but as a woman with a cause who just happens to suffer from chronic pain herself. Perhaps this is unrealistic. Perhaps I'm asking too much. Perhaps the vision of my future is over-blown in my now optimistic and hopeful mindset. But I believe in myself for the first time in as long as I can remember. And like my friends' father who just passed, I have a dream. To not pursue it would be the biggest tragedy ever, more than anything I've already endured.

This past Saturday night, in a fit of withdrawal symptoms, I had an incredibly debilitating and scary panic attack. I was coming out of my skin, I was scared of what was to come or even if it would come. Sitting across from my mom, I was wide-eyed and freaked out by my instability at the time, afraid that it would never go away. I thought my heart would explode, it was beating so fast. Tears running down my face, I couldn't even describe to her what I was feeling other than unbelievable fear and panic. She could see it without me saying a word. In the loving way only she can emote, she asked, "What can I do? Do you want me to read you the book you've been reading about the elephants? Do you want to read to yourself about the elephants? Do you want me to be an elephant?"

I laughed despite myself. Her unconditional love has always been such a gift, and in my crisis, she was willing to do ANYTHING to make me feel better. Her legacy of love, passed down from her own mother, has been a constant source of strength and understanding throughout this process and my life. And it's that legacy of love that I want to pass down to others; not just to my nephews and their future families, but to those who have suffered as I have. I want to be a source of unconditional love and help to those who feel unloved by a system that is failing them.

I have been blessed with a beautiful family who love and support me in my recovery and in my dreams, and I hope to extend my love to those who may not have the same.  The prayer service I attended for my friends' father confirmed that it’s the legacy of love we leave behind that is the most important. Embrace those you love and don’t take them for granted.  Life is too short not to.  It's not what we have, but who we are and who we have that make our lives exceptional.

In honor of Genaro Garcia Von Lembcke 

1944-2019

 And with thoughts and prayers for the amazing family he left behind

Check out Eva Cassidy's version of "Over the Rainbow" below:
https://youtu.be/2rd8VktT8xY?list=RDwVkLg3lzfLs

Desperately Seeking Jessica : The Demon of Disease

Desperately Seeking Jessica : The Demon of Disease: This is a passionate post about the misconceptions of chronic pain and opiate dependency.

The Demon of Disease

This is a post that was going to be written further in my blog and journey, but a comment from someone I considered a good friend stung me to the core, so I’m writing it now. This proves that even someone close to you can have vast misconceptions about the truth of chronic pain. So I’m explaining and, perhaps, reiterating the reason why I’ve chosen the path that I have. 

Why do I care about what someone else thinks? Because I’ve been dealing with bullshit judgments from friends, acquaintances, medical professionals, pharmacists, insurance reps, etc. for over nineteen years, and I’m sick of it. I’m finally just now learning not to give a shit.

So why do I write this? Because I care about the stigma. I care about all the other chronic-pain patients out there who live in agony and are judged for doing what any human being would do, and that is to search for relief. Those who, like me, have tried to stop their narcotics before, only to wind up with another episode of pain, back on the medications they worked so hard to rid from their lives.

Why do I write this? Because the fire is back in my eyes and my heart, and I want to fight for those who haven’t found their own voices yet or who are too ill to speak for themselves; who are stuck on the same merry-go-round I’ve been on for half of my life. Those who are living in a time when the government is restricting narcotic prescription and who are being taken off their medications without a choice. Those who need to stay on the drugs in order to survive, but who are looked down upon for it, as if they are junkies searching for the next high rather than patients in a world of hurt. Not that most people who are addicted to narcotics aren’t in pain. I believe when it comes down to it, they are all self-medicating some sort of trauma.

However, there is a difference between someone who tries time and time again to detox from opiates after a period of pain, only to have to return to them due to a relapse of the illness, and the people using legally or illegally-obtained drugs or alcohol that are just chasing a high.  It’s not like falling off the proverbial wagon. When you wind up in the hospital after another pancreatic attack, or you need a surgery for your issue, it’s hard to say “No” when doctors are prescribing narcotics, and your body is in agony. It’s called chronic illness, and it’s not a choice.

I have not chosen the things I have gone through. I did not cause the blockage in my main pancreatic duct after gallbladder disease, leading to years of horrible chronic pancreatitis. I did not ask to develop an infected hematoma after surgery for a feeding tube to be placed, infection seeping out and through three layers of blankets, only to have my 25 staples removed at my bedside without anesthesia and the clot removed. Afterwards, I did not ask that my abdomen then be left open, needing to be packed twice a day by my 6’3” father who could insert his entire hand into my wound.  

I did not ask for my insides not to heal, for a huge ventral wall hernia to form, necessitating a large surgery to sew back together first the layer of my muscle, then my fascia and then my skin, with layers of mesh placed within to help it heal. I did not ask for a surgeon to later nick my bowel while repairing my esophageal wrap, sending me into a state of sepsis and requiring emergency surgery, leaving me with a misplaced and dysfunctional colostomy that plagued me with months of pain and humiliating accidents.

Nope…I didn’t choose any of it, and that’s just a tiny snippet from my health history. Have I been through drug detox before? Yes. I’ve been through withdrawal numerous times from everything from OxyContin to Methadone. I once sought the help of my prescribing doctor to get off OxyContin and Percocet, only to be referred to Talbot Hall, a drug detox center at Ohio State. I went through a week of detox, during which a counselor reprimanded me for not attending a 12-step meeting and told me to “return to the streets where I sold my body to get my drugs in the first place”, something so far from the truth, it made me ill. My parents were told at a meeting that I wasn’t “appropriate” for their program. Why? Because I had become dependent on drugs due to illness, not because I searched them out on my own due to true addiction. I was immediately discharged. One month off my narcotics, I relapsed with pancreatitis and was put on methadone in the hospital, easily the hardest drug from which I’ve ever withdrawn.

So, yes, I have gotten off narcotics before, but I’ve never had the resolve to choose my pain over my drugs. The epiphany I had on the beach this past September woke me up to life, and I’ve never been more passionate to return to it. With the return of that passion comes a lack of patience for people who say things without thinking, who don’t pay attention to the plight of chronic pain patients, yet who choose to make comments that not only offend but disrespect the efforts of people who are trying desperately to make a change… for good.  They may not mean to be insensitive, but it is to anyone going through this elected agony.

I am choosing a different kind of life, not just a futile attempt to get off prescription opiates until the next shoe drops. I’m coming up with plans for future relapses or emergencies, with the help of my physician, for narcotics not to be used. There are new developments in nerve blocks, epidurals and anesthesia. I hope to put in writing my wish for nothing to be used that works on the same neural pathways as narcotics should these things arise. God forbid, if opiates must be used, I will elect to utilize the shortest course of drugs and get off them as quickly as possible. After four months of detox hell, I’ve learned to deal with that sometimes necessary evil and proven to myself that I can do it.

I’m choosing the demon of pain over the demon of disease. Neither is favorable. However, I’m learning there are other ways to handle pain, whereas there is no other way to cope with the dizzying numbness of narcotics other than to rid them from your life. I believe my quality of life will be higher if I’m awake to LIVE it, rather than to go through life as a zombie with my pain still an issue. As long as I was on narcotics, my tolerance was going to continue to go up and up, and eventually I’d be an opioid-induced vegetable.  I'm not saying this is the right choice or even an option for all individuals in chronic pain. However, when weighing my options and evaluating the effects the opiates were having on my life, I chose what I felt to be the lesser of two evils at this point in my chronic pain experience.

Going forward, I see myself as a soldier in this time of change. I hope to chart a course for others in my situation, for those who want free of the confines of drugs in the name of pain. At the same time, I want to help fight for those who need to remain on opiates due to crippling illness and give them a voice where before, there have been few. Perhaps it’s the detox talking, although I feel it’s the fire returning to my spirit, I have no tolerance for ignorance. My goal is to educate those who are unenlightened about the issue, as it's that lack of understanding that can damage the little self-worth remaining in a person’s spirit who is fighting this type of battle. 

The Jessica from the beach has returned, and she is fired up! There are changes to be made to the system, and I have no room in my life for those who want to stand in my way by invalidating my journey. There’s a new girl in town, and she has neither room for you nor opiates in her life. It’s a new day.

CHECK OUT THE SONG BELOW BY ANDRA DAY....

https://youtu.be/kNKu1uNBVkU