pancreatitis

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 ??

“It’s ok, Jen; we’ll figure out what we need to do to make sure this disease doesn’t affect him. This will not define who he is!”

As my eyes slowly open to the morning sunlight, I hear my husband’s voice saying that repeatedly. As I come to, I realize it is one of my few reoccurring dreams. Today’s dream was Carter’s pancreatic diagnosis day. I still remember every detail of what we were wearing and every emotion Samir {my husband} and I were feeling while looking at C-Money peacefully sleeping on his hospital bed.

I immediately snap back to reality, and without even thinking, my hand goes over to Carter’s tummy to make sure he is breathing. Merely a second goes by, and because I am not feeling his tummy rise, my mind starts racing into a dark area that would give most people nightmares. I begin to panic and rush to sit up next to him. Finally, I feel him breathe in; I can now take a deep breath too. Even though the last ten seconds felt like a lifetime, I have to remind myself it’s only been a few seconds and tell myself, breathe, Jen, breathe. For most, a moment like this would be something they would remember and look back on for days, if not years, to come. For me, this is my morning routine.

I wake up, process whatever dream I have woken up to, and immediately look over and check on Carter, my ten-year-old son. Unfortunately,  Carter has a lot of health issues. He has chronic pancreatitis, Sanfilippo syndrome, portal vein thrombosis, and many other things that come with those diseases. As cliche as it sounds, Carter fights for his life every day.

Carter’s pancreatitis causes him pain every day, and his portal vein thrombosis could cause an internal bleed at any time. If that wasn’t enough, his Sanfilippo syndrome has no cure or treatment option. It causes developmental delay and behavioral issues and is a degenerative disease. It will take every skill he currently has, from talking, walking, and eating by mouth; he will develop more substantial seizures than he already has, and sadly, my son will probably not make it to adulthood.

We have lived in the hospital for weeks on end. I have seen my son knock on death’s door, look inside, then turn around and say not today, thank you. He has gone through so much in his short ten years, more than most people experience in a lifetime. Yet, he wakes up every day ready to take on his next challenge. I, on the other hand, I am not as strong as my son.

People tell me that I am strong, that they couldn’t do what I do, and all the other things they think might be a complement to a parent of a child with a disability. Do you want to know a secret? The reason why I can do all the things I do is because I am in a constant state of fight-or-flight. My body and mind think I must fight daily to survive, and it’s not something I think will ever go away.

Being a parent to a medically complex kiddo, I can tell you we are in this constant state of fear. It is fueled by anxiety, a dash of depression, and of course, PTSD. I wake up every day wondering if last night was the last time I would kiss my son to sleep. If yesterday was the last time I heard him laugh or chase him while he ran laps around the house. It’s a vicious cycle; I fall asleep to the sweet sound of him breathing, only to be woken up again the following day, fearful that I may not feel that deep breath taken in, and I am always just trying to catch my breath.

themighty.com/topic/Sanfilippo-syndrome

So, later this month I'm seeing a neurologist. I have reason to believe I have MS and it's affecting the Vagus nerve. But my question is what does the hug feel like?

I have had 12 spasms in 4 different rounds since March that last between 15 to 45 minutes long, no doctor has found the cause and there are no imaging or blood markers. The pain is extremely painful and sometimes it's so bad I pass out from it. It's usually focused around the bottom of my chest bone and at the bottom right rib simultaneously. The more recent rounds have occured about the same time more severe neurological symptoms have flared up and while my Dr says it's probably coincidence, I have a gut feeling it's all related.

The first round they said was gallbladder stones because it caused pancreatitis, the second round it caused pancreatitis also, either that or the pancreatitis never went away because it was lwss than 2 weeks between episodes. The last 2 rounds no pancreatitis, but ER couldn't find anything on imaging or in labs. My gastro has basically done all studies and imaging and cannot determine the cause. Simultaneously I've had a ton of neurological symptoms and my primary said she thinks it's fibromyalgia and has me on a low dose of gabapentin. I have tons of other symptoms, but this question is specifically about the hug.

Does this sound like an MS hug?

“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 “natewrites.com/healing-the-younger-you” workshop hosted by natewrites.com/about. Perhaps, I will find the answer to my question there.

Hi! This is my first post on The Mighty. I am very scared right now. I am worried that the cancer is back, and I am not being taken seriously enough. I just want to cry...but I can't seem to. It doesn't help that I have caffeine circling my body right now making me even more anxious.

#CheckInWithMe #Cancer #pancreas #pancreatic #pancreatitis #Caffeine #cry #scared #anxious

I’ve been having an appetite disorder since I had pancreatitis in February. My appetite still has not come back #Appetite disorder

#EatingDisorder