I'm new here!
Hi, my name is TaliaW. I'm here because
Hi, my name is TaliaW. I'm here because
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
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 ??
“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, my name is KittlE. I’m new to The Mighty and look forward to sharing my story.
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
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, my name is Jkenyon80. I’m new to The Mighty and look forward to sharing my story.
#MightyTogether #ChronicPancreatitis #whipple #PancreaticCancer #Anxiety #ADHD