Hereditary Pancreatitis

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Hereditary Pancreatitis
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Hello. I'm Caroline but my username is Loudflower. I'm here because I've recently been diagnosed with hypermobile Ehlers-Danlos - this diagnosis came a few years after being diagnosed with breast cancer due to a gene mutation and going through all the surgeries and treatments that follow. That is the very short version. Life has changed, y'all. Some days I am determined and optimistic and too many days I am just struggling. It's a lot. I have even retired early (I am a pharmacist). I'm hoping to learn from everyone, and hopefully to find a laugh or two as well.

#MightyTogether #EhlersDanlosSyndrome #JointHypermobilitySyndrome #Hypersomnia #HereditaryBreastAndOvarianCancer #HereditaryPancreatitis

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So this is life

I am in my 50’s and have #HereditaryPancreatitis and other hangers on illnesses and disability caused by this.

My mother knew when I was a baby that something was wrong and it was probably that . I started vomiting formula between three and six weeks and the serious pain started at three. It took til I was seven to be diagnosed fully.

My life has been full of “unfinisheds”. School , various college courses , I qualified for art school but was not allowed to go. I have never properly finished a probation at work, been made redundant 6 times and had a full hysterectomy in my twenties so no children, therefore busted #Relationships . I was very lucky to meet my husband in my late twenties and we are still together.

From 2017 to 2021 I had the best years of my life. I was not being admitted to hospital 4 /5 times a year and was living a ‘ life” of sorts. Using I’m morphine at home to “live” a life . I was not frightened of doing things, eating, going places and life was good within my boundaries. Then I had my first #COVID19 jab. It floored me . Within two weeks I could not eat at all and spent 4 months in hospital. Then around Nov 2021 I was discharged on a tube feed. I was putting on weight I went out with a friend for coffee twice . I felt I was getting my life back. Then all of a sudden a phone call from a pain “consultant” he was taking me off my opiates in line with new legislation, all of them . No titration , no discussion . Worse still the local hospitals then refused to treat me. Christmas was hell , pain vomiting, and withdrawal. I was not allowed to contact him , he would not discuss things with me my husband or gp. I was not his patient and yet he had the right to do this. My health deteriorated very quickly , I lost 22 kilos in weight , became very emotional and lost everything and to top it all my brother took my family away from me including my mother , who has altzeimers. I am now no contact with them all. He is a narcissist who controls my mother and his family. But by the grace of god, he never got this I did. He however used to fake my symptoms to get attention , time off school. We are finished he has told people I have bi polar and am a drug addict.

So here I am a long way from home in hospital for 3 months. Because I can no longer have my medication at home. I contacted NICE, who confirmed that the new legislation was not aimed at people who already had been on opiates , but should only be applied to new patients . My GP won’t listen .

I have not eaten or drunk for 18 months. No going out , no seeing people tube fed . I live in hell .

So life for me and my husband is over. No pain relief , no life. No family. . Over …………….


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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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 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.


Advocating for others like me!

I’m thinking about starting a patient advocate service for pancreatic sufferers! Whether it’s from chronic pancreatitis, acute pancreatitis, pancreatic cancer or some where in between! I have a degree in social work and I’ve suffered for 5 years now with some form of pancreatitis! Or should I say everything but pancreatic cancer!!Any advice on where to start? #ChronicPancreatitis #PancreaticCancer #HereditaryPancreatitis I #ExocrinePancreaticInsufficiency ##pancreaticdivisum

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Ceiling tiles #Hospital #illness #InvisibleIllness #HereditaryPancreatitis #pancreatitis #ChronicIllness #ChronicPain #Nurses #InvisibleDisability

As I stare up at the ceiling I am comforted. The same ceiling tiles. Off- white, slightly dusty, crisp and square. Everything is normal. The light tile is there and so is the vent tile. As I look to my left and to my right I see the happy painted curtain held together by fish like netting on the top. This is my normal. This is a place that I can find comforting. The sound “whoosh whoosh beep” as the fluids are pushed into my veins. The sound of a singing beep as the medicine alerts the nurses that it is ready for the flush. They come in. They ask how the pain is. I tell them fine because that’s what they want to hear. It never is fine but at least they can rest easier. As the words slip from my lips I continue to stare at the same classic off white ceiling tiles. I wonder how many prayers they have heard and how many prayers have bounced off of them and were returned. How many people have looked to the sky (ceiling tiles) for answers. How many laughs have these tiles seen. Have they seen more tears and fears. Have they seen to much death enough to put any caring person in bad health. Have they seen patients alone crying for a chance or have they seen patients crying for death. Pain. That’s what they have seen in all ways and all types.