Chronic Pancreatitis

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Chronic Pancreatitis
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    Travel Agent for Complex Medical Care and Special Needs

    Hi everyone. I used to be on here but I can’t remember my login or the email I used so I am starting a new one. I am mom to two young adults with cystic fibrosis and other health issues. I have RA and other conditions as well. I had to change my career due to the risk of COVID and my son’s transplant not to mention the kids CF in general. I am an esthetician and makeup artist so I touch people’s faces for a living. So during the pandemic I started thinking what I can do now since I am 50+ and worked cosmetics since I was 17. I have always dreamed of working as a travel planner/advisor/agent. I travelled a lot as a kid due to my dad’s work and I picked up the travel bug while I was still in diapers. I found out that due to the pandemic people are relying more on travel advisors more than ever. Then I wanted to narrow down my specialty/niche. I figured it out, I hope. I have had to figure a lot of things out traveling with my kids, especially our son. Meds galore, some refrigerated, vest compression machines(2),, nebulizers, nebs, feed pump, supplemental feed, tubing, feed bags, plenty of snacks traveling, wheelchairs and fluid at all times. I had to research hospitals in London when we went on my son’s make-a-wish so we would know where to go just in case. A plan A plan B Plan c just in case. Then for my sons transplant which we had to relocate for and my daughter’s make-a-wish. These experiences taught me so much, not to mention seeing what my fellow moms would do in order to travel. So have decided to help chronically ill and special needs travelers and their caregivers. Everyone deserves the opportunity to explore this beautiful World and I would feel honored to help facilitate this. I started my business several months ago and found out there is a great need for this. I have been learning so much and have been working with some clients already, some with challenges and also some great family, leisure & luxury trips. I am so glad I made this change. I guess a few good things have come from the pandemic. I have decided to not charge my clients for medical travel advice. I hope to help as many people as I can.
    #Travel #travelagent #specialneedstravel #medicaltravel #sunflowerlanyard #InvisibleIllness #ChronicIllness #CysticFibrosis #Transplant #pancreatitis #ChronicPancreatitis #tubefeeds

    3 reactions 1 comment

    I'm a disabled Caretaker #ChronicPain #ChronicPancreatitis #LungCancer #DownSyndrome

    I've been recovering from a car accident I have abdominal wall denervation and a crushed vertebrae and three herniated discs. I talked morphine every day. I have anxiety and depression. I live and care for my Downs syndrome daughter as well as my 82 year old mother who has pancreatitis the beginning of dementia and has just been diagnosed with lung cancer. She is coughing up blood. My mother smoked all her life and I have tried everything to slow and stop her from smoking and she won't. It breaks my heart every day to see this so I stay in my basement most days I need help I can't cope anymore. How can I stop her from smoking ??

    6 reactions 8 comments

    How chronic medical neglect in childhood has repercussions into adulthood

    “How does one resolve the triggers of childhood medical neglect as an adult?”

    I asked myself this question; because, I am experiencing overwhelming emotions in response to my current barriers to medical treatment.

    Throughout my childhood, any time I told my mother I didn’t feel well, she would respond with, “If you’re still sick in two weeks, I’ll take you to the doctor.” There were only four times in my childhood I was taken to a healthcare practitioner. The first was when one of my toes was hacked half off in an accident. The second was when my third grade teacher told my mother I might need glasses. The third was when, at the age of 15, I told my mother I wanted to go to a doctor and find out why one of my breasts was a full cup-size smaller than the other one. The fourth time was during that same year. I was taken to a mental health professional when my parents were informed by my school that in the year prior I had, on one single, isolated occasion, missed my Physical Education class without an excuse note being submitted.

    I came to believe that my health only mattered to my parents if I might die or if they thought my health issues might reflect badly upon them; i.e., another adult pointed out there might be a problem that could affect my grades; I might be deformed and, therefore, a freak; or I might be considered a disciplinary problem by other adults.

    As an adult looking back on health symptoms I had as a child, I now know there were some serious issues that went unaddressed; which, I am now forced to deal with on my own.

    From the age of 6, I would get recurring, excruciating abdominal pain. This was likely the beginning symptoms of the Hereditary Chronic Pancreatitis I was diagnosed with two years ago. I realize this because, just like me, my granddaughter began experiencing similar abdominal pains when she was 6 years old and, three years ago, was diagnosed with Hereditary Chronic Childhood Pancreatitis.

    From the age of 12, I have had a chronic and progressively worsening productive cough. Last year, I was scheduled by a Pulmonary Specialist for a sweat chloride test for Cystic Fibrosis because of my current and historic symptoms and the fact that my sister and her son tested positive for the CFTR mutation. The pancreatitis SPINK1 genetic mutation and the CFTR genetic mutation are related. This is why most pediatric pancreatitis patients are CF patients. Unfortunately, I was never able to receive the sweat chloride test because of barriers to medical care; which, I am still trying to navigate.

    At the age of 14, I had my first suicide attempt. Rather than rush me in for a psychological evaluation, my mother ridiculed me in front of my siblings. Last year, I was diagnosed with Complex Post Traumatic Stress Disorder and Autism Spectrum Disorder.

    Being a low-income, Senior, disabled woman on Medicare I am experiencing many barriers to healthcare. Every time I experience these or run up against roadblocks in advocating for myself, my inner child is re-triggered with the devastating belief that my health, and therefore my life, does not matter to others.
    The silver-lining to this story is that an anonymous person paid for a scholarship so that I can attend a month-long “” workshop hosted by Perhaps, I will find the answer to my question there.


    I'm new here!

    Hi, my name is KittlE. I’m new to The Mighty and look forward to sharing my story.



    #Crohn 'sDisease


    1 comment

    I'm new here!

    Hi, my name is Mike1958. I'm here because

    #MightyTogether #Anxiety #Depression #Migraine #PTSD also end stage liver disease , polycystic kidney disease , chronic pancreatitis , osteoporosis and beaten by cops for videoing


    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?


    Hi. New here and suffering in all kinds of ways. Has anyone else lost teeth from chronic pancreatitis or meds given to support? #ChronicPancreatitis



    I’m new here!

    Hi, my name is Jkenyon80. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #ChronicPancreatitis #whipple #PancreaticCancer #Anxiety #ADHD


    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

    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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