Chronic Pancreatitis

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Chronic Pancreatitis
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    Community Voices

    Welcome New Members

    I welcome my first 2 members to the group! I am sorry I haven't been active on here as much as I used to be. I received shocking news from my Diabetes Specialist about 4 weeks ago that he wants my pancreas removed right away! I have been scared as I already live without my stomach and without my colon. Although, I do admit that I AM JUST SUFFERING DAILY NOW WITH THE CHRONIC PANCREATITIS IF I EAT! The pain is unbelievable!
    I did, however, get an appointment at the Mayo Clinic in October wanting another opinion. How are you doing?

    Community Voices
    Evelyn Donato

    The Pain of Watching Friends Drift Away After Becoming Chronically Ill

    Since 2005, my full-time job has been managing my health. If it were my chosen career, I’d be considered an undeniable success story since I’ve risen up the ladder quite rapidly. But in this world, managing chronic illness and pain doesn’t win you any promotions or accolades. It’s an often isolating experience. I was born with a congenital birth defect of my pancreatic duct and a gene mutation which led to chronic pancreatitis and the eventual removal of my pancreas, gallbladder, spleen, duodenum, and part of my stomach. As a result, I have a myriad of health issues including diabetes, gastroparesis, GERD and bile reflux, small intestine bacterial overgrowth, difficulty digesting vitamins and minerals, and chronic pain. The trajectory of my illness has been riddled with ups and downs these past 15 years. It’s impossible not to draw corollaries between my health and my personal and work lives since they’re intricately woven together. Before I became ill, I worked full-time for a national non-profit organization, which meant I put in long hours and traveled on a regular basis. I was also doing freelance writing on the side and finishing up my undergraduate degree. I was newly remarried, my elderly mom was living with us, and we’d recently become foster parents to a 10-year-old girl. I was part of a group of close friends who spent a lot of time together – going on vacations, celebrating holidays, watching Super Bowl games, hanging out on the weekends. One couple even acted as godparents to my two kids while they were growing up. But, like so many who live with chronic illness and pain, my world became smaller as my disease progressed. It’s hard for those who are healthy to wrap their mind around what we go through on a daily basis. And when the illness is “invisible,” it’s even harder. By the time I had my pancreas removed in a 10-hour surgery in 2011, most of my friends had moved on. Those who had once been in my inner circle didn’t come to see me in the hospital (granted it was more than 500 miles away) or call in the 18 days I was there. Once home, there were no check-in calls or texts asking how I was doing or if I needed anything. The silence was deafening. It took me several years to truly understand that what happened with my friends was not malicious or intentional. It was the unfortunate by-product of change. It was the natural shift that occurs when people are no longer moving in the same direction. Like a road that reaches a fork, I went left while they went right. Being chronically sick also helped me to better understand the nuances of friendship. Up until then, I believed that friends who socialized a great deal, who traveled together, enjoyed holidays together, and hung out together were by nature “close” friends. But once chronic illness entered the picture, the friendships were not deep enough to withstand the changes they brought to bear. S. Kelley Harrell says: “Miraculously recover or die. That’s the extent of our cultural bandwidth for chronic illness.” As a culture, Americans do better with the finality of death. There are religious and cultural conventions for observing the passing of loved ones. People attend funerals or memorial events, send cards and flowers, make donations to the person’s favorite charity, and bring casseroles. There is usually enormous support for the first weeks and months after a death and often a more quiet acknowledgment among good friends for years afterward. But the same cannot be said about chronic illness where the “loss” isn’t final and the emotional agony is ongoing. There are no cards that acknowledge when an illness becomes a continual challenge unless, of course, it’s for a hospital stay or operation. There are no ceremonies for when that individual’s life is changed immeasurably. We simply have no rituals for the sustained grief that keeps on giving or the agony that becomes a way of life. Once I began having to routinely cancel plans; once I was no longer able to drink alcohol or share a meal; once I could no longer be as active as I had been when healthy, the natural consequence of these changes led to them continuing on without me. I became expendable because, after all, who wants to hang around someone who is always sick or in pain? As they drifted away, I felt an isolation and grief that was crushing. I blamed myself for losing friends who had been in my life for more than a decade. It didn’t make it easier knowing that most people pull away during times of crisis because of their own shortcomings and inability to handle the stress and limitations brought on by chronic illness and pain. Logically that made sense. Emotionally I was devastated, and watching my friends drift away was almost as painful as my illnesses. Fortunately, I’ve been blessed with a few long-term friends who have navigated my illness along with me. And there are those who have become friends since I became chronically ill. They don’t ask “Why?” They don’t wonder when I’ll be “cured” or “back to normal.” They are able to tolerate the unknown and sit with me in my grief and struggle, and celebrate with me in my joys. They were (and remain) my saviors.

    Community Voices
    Community Voices

    Self-Advocacy Can Be A Struggle

    Part 1 of 5 Response to dismissal from services letter

    Dr W,

    I had held you in such high regard. You seemed to be a doctor who genuinely cared. You spent longer than your HMO allotted 15 minutes with your patients, asking appropriate questions, explaining things in layman’s terms, and answering questions even with the client might have thought their question would be considered stupid.

    You knew a good deal about what I had been and was going through:

    The family murder/suicide
    The fact that I was dealing with unprocessed #Trauma from being enlisted in cleaning up the bloody crime scene because the police nor coroner’s department perform this service
    That I was turned away for #MentalHealth services to process this #Trauma by 25 clinics in Oregon and 5 clinics in Nevada citing Medicare

    Quotas
    That calling the Oregon State Ombudsman’s and Governor’s Advocacy offices only resulted in me being told they only help with Medicaid
    That I make $200 too much with my SSDI and tiny pension from the County of San Diego Department of Health and Human Services to qualify for anything but Qualified Medicare Benefits under Medicaid with a $2600 spend down which is impossible to meet
    That a clinician in Nevada, who said she would work with me, fired herself 2 weeks in saying my family issues were too triggering for her
    That calling NAMI only resulted in advice to lodge a complaint with the Federal Comptroller
    That the representative at the Federal Comptroller’s general phone number informed me that filing a complaint had no effect on obtaining care and that I would hear nothing about the disposition of any investigation nor whether it would be determined if an investigation was even warranted
    That the primary care physician in Salem, OR, refused to even consider that I might have a mild or moderate form of #CysticFibrosis despite:

    The progressively worsening cough I’ve had since as far back as 12 years old
    I have chronic #HereditaryPancreatitis
    My daughter has one marker for the SPINK1 mutation
    Two of my granddaughters have both markers and have a heterozygous manifestation of the hereditary #ChronicPancreatitis
    That my sister and her son have a genetic mutation of the CFTR gene

    That after the murder/suicide and subsequent denials for #MentalHealth services, my daughter and the rest of my family expected me to still be on my best behavior and ended up going no contact with me for small disagreements which unnecessarily escalated because of their lack of compassion
    That I was battling with my apartment management over their willful negligence regarding

    The plumbing leak
    The storm damage in the ceiling
    Mold growth in the apartment with dissemination into the air through the HVAC system
    The snakes in the apartment; which, took an adult protective services worker’s involvement to remedy

    That the only resolution offered me regarding my living conditions by three legal aid agencies was a 14/30—an ultimatum I was unable to follow through with because I had no money to move
    The fact that, because of the mold exposure, I came to your office to be tested for mold in my lungs only to discover from the lab results of the sputum sample that there was actually Pseudomonas aeruginosa in my lungs
    I am having trouble with medical transportation because:

    I have no vehicle
    My son, friends, and neighbors have no desire to help
    My Humana Medicare Advantage Plan offered a choice between in home services should I become unable to care for my own hygiene or of receiving medical transportation services. I chose the in home services because it had been helpful in the past after back surgery and I had always been able to secure medical transportation in the past from Johnson County #MentalHealth Transportation Services
    When I had trouble getting a medical ride from JCMH, I was informed by the program director that the program is officially only for the work and school rides of clients and because of short staffing caused by #COVID19 exceptions are now an extremely rare occurrence
    That I was turned away from 37 different agencies which provide medical transportation because either I’m not a Medicaid client or because, I live on the outskirts of De Soto, I am out of the service area
    That ride-share is unaffordable to me—it cost me $80 round trip from De Soto to KU Med West to provide the lab with the sputum sample you requested

    That I was having problems getting treatment for the Pseudomonas in my lungs from the pulmonary clinic when the Levofloxacin you prescribed me

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    Community Voices

    Self-Advocacy Can Be A Struggle

    Part 5 of 5 find a silver lining. The silver lining is this:

    I think this dismissive treatment by KU, Overland Park Regional, and Menorah has cured the chronic suicidality I have had since the age of 14. It’s one thing when a person chooses death for themselves. It’s quite another thing when the doctors choose it for them. I am now determined to heal myself of all of my physical and mental ills. I plan going on to live until 102 just as a spiteful gesture to these doctors. Jesus Christ said, “Physician, heal thyself.” I am intelligent enough and love research so much that I will be my own physician and heal myself through use of the plant medicine God put on this earth for us to use.

    I am genuinely sad and disappointed that you had no motivation to help me as a fellow human being and, through your lack of compassion, added to the message I am receiving that society thinks I am a person with nothing left to contribute to society and should just drop dead and stop stealing air from those who are worthy.

    I’d like to inform you and the rest of KU that you are wrong. I am still a contributing member of society with 6 published articles on The Mighty online platform; one of which, was published on MSN.com as well. And, there’s another silver lining—the stories based on my horrible experiences including how I have and continue to navigate them have given me the status of a legitimate health and well-being journalist who is helping others as they experience similar circumstances.

    Evelyn Donato

    When Food Is the Enemy With Chronic Pancreatitis

    We were sitting around the table of a newly opened Thai restaurant. Eight friends getting together to catch up on our lives in the weeks since we’d last seen each other. Three bites into my dinner I had to excuse myself. Trying not to run, trying not to bend over as I made my way to the restroom, I did everything I could to look “normal.” I was praying I’d find a women’s bathroom with a lock on it so I didn’t have to embarrass myself by having someone see me lying on the bathroom floor in front of the toilet while the overwhelming pain, nausea, vomiting and need to empty my bowels consumed me for the next hour or more. Dignity is often a casualty of serious illness. It was the tail end of 2005, and I’d been dealing with strange symptoms for months — sometimes vague and transient, sometimes a full on assault that left me physically and emotionally spent. I never knew when they would happen, but happen they would. And with greater frequency it was turning out. I couldn’t eat without setting off a chain reaction of symptoms, including the most intense, intractable pain I’d ever experienced. I’d lost 20% of my body weight over the course of a few months, and none of my doctors could tell me why. When I finally convinced myself to see a doctor in early 2006, it was because I could no longer pretend that I was just reacting to stress or to the problems in my marriage. Like many women, I put off self-care and minimized what was happening to me because there were so many other things that needed tending. It took until the middle of 2007 before I was diagnosed with chronic pancreatitis, which was the beginning of more questions than answers. Learning I had a progressive, debilitating disease that didn’t have a gold standard of treatment, let alone a cure, was both frightening and confusing. In the 15 years since then, eating is a delicate balancing act: something that requires a great deal of thought and planning, especially if it involves being in public. Putting any kind of food in my mouth is like a game of roulette, never knowing if the next bite is the one that will cause the pain to spiral out of control. Let’s face it, so much of life revolves around food. Going on a date? Food. Going to a movie? Food. Workplace birthdays or meetings? Food. Weddings and anniversary parties? Food. Watching TV or binging on Netflix? Food. Getting together with friends? Food. Holidays? Food and more food. It not only sustains us physically; it’s the very fabric of our work and social lives, but it isn’t something we really give much thought to until we’re trying to lose weight or improve our diet, or like me, have health issues that are exacerbated by eating. I can’t begin to count how many invitations I’ve had to turn down or cancel because I was afraid what eating out would mean for me. Hours, days of pain. Unrelenting nausea and vomiting. A trip to the ER. A hospital admission. I’m slowly making peace with food, making peace with my body, knowing it’s doing its best to take care of me. And in turn I’m learning to take care of it. So I take the time and effort to create food that’s nourishing and healthy. I might only be able to take a few bites, but I savor the experience — both in the eating and the sharing of connection that occurs when I break bread with another. Despite the complexity that is my relationship with food, I want to bite into life and to be torn by it.

    Evelyn Donato

    Exploring Vulnerability and Humanity at Midlife With Chronic Illness

    I’m sitting in the waiting room at my doctor’s office, something that’s become more and more a part of my routine than I’d like to admit. Most days I genuinely feel I’m on a Shero’s journey and I’m grateful to be alive, despite the numerous health challenges that have dogged me for the past 15 years. Most days I go about the doctor visits, hospital admissions, tests, blood draws, and IV infusions as if it was just something I do, like brushing my teeth or taking a shower. Just part of life. My life anyway. But as I sit here this morning, waiting for my name to be called, I’m feeling a weight heavy on my heart. I pick through the various adjectives, trying to lay claim to the one that fits what I’m feeling. And then I realize what it is. It’s grief. Bone-crushing, heart-wrenching grief. Grief for the life I used to have before the diagnosis that changed everything. I want to lay down my armor and sink into the sorrow. The regret. I want to cry. But of course I don’t. And not because there are a room full of people (many dealing with their own significant health challenges), but because I rarely give myself permission to be vulnerable. Especially around my illness. I soldier on and tell myself I could have it so much worse, or that I’ll be letting others down, or that it’s self-pitying to allow the negative feelings room to breathe. These feelings are further complicated by the messages I received as a child. The tape that plays for me says I only receive love and attention when I’m hurt or sick. It’s not true, of course, but it was definitely the case as a child, and throughout my life I’ve let that internalized belief impact my ability to see myself as healthy and whole. There’s been a push-pull relationship with that little girl who got attention the only way she could and the woman who knows I am worth so much more than that. And if I’m honest, there is a residual shame that surfaces when I remember those times I sought out solace, looked for love through the lens of sickness. I worked hard as I moved into midlife to rid myself of this worn out tape. Climbed Mount Kilimanjaro at 41 (after more than a year of intense training), cut back on my beloved Mike and Ike’s (and all sugar – much more difficult than climbing a mountain), began eating organic fruits and vegetables, enjoyed protein-rich shakes and probiotics. I was 45 before the image I carried of my inner self finally felt congruent with that of my outer self. I thought I’d outrun my past, but life surely loves irony, and at the peak of my “health” I became seriously ill. Being sick brings up all kinds of vulnerabilities for me. Shame. Doubt. Insecurity. Self-blame. In our current culture, so much credence is placed on positive thinking and the Law of Attraction and, of course, as a coach I’ve heard my fair share of well-known experts espousing the belief that we bring to our life what we really, truly want. I’ve even been known to tout these mantras a time or two (or three). But couched within these well-meaning belief systems is a more insidious message: That if bad things happen, somehow we’ve asked for it. And that’s too close to blaming the individual for what are often experiences well beyond our control. The reality is people get sick, bad things happen, and no amount of positive thinking or willing prosperity is going to change that. What we do have control over is how we choose to deal with what life brings to our door. Sitting in the waiting room as I work through the grief that hits me like a tsunami, I open up to the understanding that being sick also means I’m human. I’m human. I’m not getting out of being in this imperfect body for the duration. And really, I wouldn’t want to. Despite the vulnerabilities that come up. Because of the vulnerabilities that come up. I realize it isn’t about preventing life from happening – in all its glory and pain. It isn’t about thinking of ourselves as weak or damaged when life throws us a major curve ball. It’s about what we do with what we’re given – how we choose to rise above, how we choose to be fully human. I realize it’s no better to see the glass as half full than it is to see it as half empty. The reality is that it’s both. The wisdom comes in seeing both sides, and becoming empowered to deal with the whole glass effectively. And with that understanding, I free the tears that have been aching to be released. I free myself.

    Community Voices

    Life is…..

    <p>Life is…..</p>
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