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Hi, my name is Salnsal1. I'm here because I co care for my husband who has FTD with motor disorder and my mom who has Alzheimer's. My 27 year old daughter helps me she has all the anxieties according to a therapist and is on the spectrum plus has heart problems. I survived 4th stage cancer I live with chronic migraines, fibromyalgia, chronic pain, pancreatitis and a foggy brain with memory issues since kemo. I am looking for support and knowing of all of the above plus looking to connect with others that are dealing with some of what I deal with on a daily basis. My migraines started as a child without the headache part until I was 12 than the headaches started I wasn't diagnosed tell I was older. I was given 2 weeks to live in 2009. Life is very precious to me as I have had to fight my intire life. My daughter has tought me to listen to my body and slow down before I put myself out for days or weeks. I look forward to getting to know people on here.

#MightyTogether #Migraine #Fibromyalgia

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H.ELP. Needed, H=Hearing E=Everything L=Listening P=Please

EDSer, Multiple other "special rare" diagnoses. Finally GI dx gastroparesis, collapsing esophagus. Already + many other EDS related GI "issues" megacolon, endogenous fermentation syndrome, chronic & acute pancreatitis which snowballs into kidney & liver failure.
Here's the questions I have to find new GI. Curre 1 Said gastroparesis & esophagus "absolutely not related to EDS & will do nothing more for me"
Pain is debilitating, rarely eat difficult to keep fluids down, this is more often than not. Needing to gain strength for C-Spine fusion before "you're paralyzed & in a chair for life" I'm grandma to a dozen...have dysautonomia & TBI from too many concussions from brady/tachycardia. I'm in FL yet willing to travel. NY Langone is best for dysautonomia or Tel Aviv!! Can't keep putting off neurosurgery. Yet nutritional status is down the drain. 67 yr old desert old hippie dippie. Nothing is promised yet I've 1 (outta many) institutionalized child 32 yrs young, & want to be here as long as possible. Ty for any & all input. I'm
lost & overwhelmed. #haveextaordinaryfun #LivingAllRareGirlsExpoloring

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Never judge a book by its cover. #chronic pain#Disability #Depression

This picture of my daughter shows a happy young woman, full of promise.
But underneath her smile is pain. The pain of feeling undeserving of love. The pain of excessive drinking to deal with those thoughts. The pain that came when she knew that she'd never feel good enough. Or enough.
My precious daughter passed away Feb 2022, when her heart finally gave out from chronic alcohol abuse. Her last year, she was hospitalized 7 (yes 7) times for pancreatitis due to her drinking. And her doctors warned her. Every time. Yet she always went back home, knowing that she'd continue drinking.
We talked by phone nearly every day. We shared music and books. And pics of our pets. And she'd say how she adored her husband. But that she didn't deserve his love or anyone's love. Nothing any of us said would change how she saw herself. Rehab didn't work. Therapy didn't work. She couldn't face the true source of her feelings and always stopped when therapy got too close Her friends, too, tried to help. But her beliefs came from a deep, dark place within her. We never found out what it was.
We are all moving on, in our own ways, at our own speed. Personally, I've learned that it's not disrespectful to her memory to move on.
I remember her as the 3 y/o, singing along with Patsy Cline on the radio. And at 18 months old, sitting in my lap, as we watched beavers in a pond, building their dam. And when we had to put the Christmas tree in the playpen to keep her OUT ! And her love of animals. And her laughter.
But mostly I remember that as each phone call ended, she'd say
"I love you Mama." And I'd reply
"I love you too, my precious girl." Or vice versa.💗
Those were our final words.
You really were the sunshine in all of our lives, Melinda.🌞
Rest peacefully, at last, precious girl, surrounded by God's love and Heavenly music and the animals you loved.

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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

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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 ??

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Fight or Flight

“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.

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What does an Ms hug feel like? #MultipleSclerosis

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?

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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.




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