Cystic Fibrosis

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Cystic Fibrosis
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    I'm new here!

    Hi, my name is My5sons. I'm here because I have raised 5 sons. 2 with Cystic Fibrosis. I now believe that as a result of living in survival mode for so long, I not only have PTSD from watching my sons go through so many multiple hospital stays & procedures, but, I now believe that living in survival mode for so long has impacted my emotional health, or, rather, I now have an empty tank, if that makes any sense. Further I have experienced so many issues relating to raising chronically ill children, that, I believe maybe some of what I’ve been through can help someone else.

    #MightyTogether #PTSD #Grief #CysticFibrosis

    8 reactions 6 comments

    Back to the gym after being sick

    So I was sick for about 3 weeks and I finally started back at the gym this week. I had a sinus infection that turned into an upper respiratory infection then possible pneumonia. I was given antibiotics, oral steroid, inhaled steroids and was doing my nebulizer a lot. I finally got over the hump and started to feel better so I started back at the gym this week. Before I got sick I was getting better and more comfortable running. I was almost up to 1.25 miles! Which isn’t a lot but it is for me. I knew I was going to be out of shape but I could barely get to 0.5 today and it was so disheartening. I am proud of myself for knowing my limits and not trying to push myself too hard but it’s frustrating to get set so far back. #Asthma #CysticFibrosis #College

    2 reactions

    I’m new here!

    Hi, my name is Todd. I'm hoping to find a supportive community.

    #MightyTogether #CysticFibrosis #Depression #ADHD

    3 reactions 2 comments

    I’m new here!

    Hi, my name is strawberryjuls. I'm here because I want to connect more with chronic people like me. I’d love to know more about cystic fibrosis to be more there for my friends and write a book that includes this illness.

    #MightyTogether #ChronicIllness

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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

    5 Ways to Advocate for Yourself at Your Doctor's Office

    Part 1 of 2 Chronic illness can make us feel disempowered. The unpredictable and shifting symptoms leading to pain, worry, doctors appointments, cancelled plans and relational and economic impact emphasises feelings of lack of control over our life, body and emotions. With the lifelong disease of cystic fibrosis there are two things that have been the epicentre of feeling more empowered as a person living with chronic illness: self-education around health and wellness; and learning to advocate for myself in any situation but particularly at the doctors office.

    You can advocate for yourself in any situation or interaction if you want to and it feels appropriate to you; for me it is closely related to educating others, respecting yourself and your needs, and honouring your boundaries. As a young person with cystic fibrosis I had no idea about boundaries or speaking up for myself – I never knew that I could refuse doctors physical examinations, or ask for a female clinician so that I felt more comfortable having my teenage body examined. I never knew that I could ask as many questions of my doctors as I wanted to, or even refuse a particular treatment if I didn’t want it. Over hundreds of hospital appointments and other life experiences over many, many years I learned that I had every right to advocate for myself with my doctors as well as my partners, friends, parents and employers and it has greatly improved my confidence, self love and my sense of empowerment in living with chronic illness.

    Here are 5 ways you can advocate for yourself with your medical team and specialists:

    1. Arrange your medical appointments at times and days that suit you, your health and your schedule. I admit that depending on which medical system you are in, this may or may not be possible, but I certainly recommend you to try. If you feel physically much worse early morning, maybe you prefer an afternoon appointment so you don’t feel rushed or extra stress to get to your appointment on time. Maybe you have a job where you feel terribly guilty and uncomfortable asking for time off for medical appointments, so ask if you can have an appointment outside your working hours.

    2. If you don’t like your doctor or specialist, ask to see someone else. I think we are all aware that some doctors are just not ‘people persons’ , ie. have a terrible bedside manner and do not know how to communicate or relate well with patients. This can be really off-putting and unpleasant as a person with chronic illness, because you may well feel alone in your illness already, and so a kind doctor that listens can be really important to you and the management of your health. Sometimes we simply are just not a good personality match with our designated doctor, so don’t be afraid to ask for a different one! There are normally several doctors working in the field of your particular illness, so it’s not a problem to be listed with a different practitioner. If your hospital or receptionist make it into a big problem or make you feel guilty for asking this – kindly remind her of your rights and if you need to, ask to speak with the head of the department.

    3. Don’t be afraid to ask as many questions as you want. Chronic illness is often complicated and can feel especially overwhelming if we don’t understand what is happening in our bodies or minds. Remember, your doctors are there to help you and treat your conditions, and that is what they are paid for, so don’t be afraid to ask questions – there are no dumb questions, and you have the right to proper care and communication.

    4. If you want a second opinion, ask for it. As we know, chronic illness can be difficult to treat and doctors are often semi ‘experimenting’ with your particular symptoms, and they will often admit that themselves. Chronic illnesses and their treatments are not an exact science. If you receive a diagnosis or treatment plan that you don’t feel certain about, you can ask the doctor to either consult with his colleagues or you can ask for a second opinion. This doesn’t have to be as confrontational as it sounds, you can simply voice your concerns and explain that you would feel much happier with another doctor also looking at your case. If the doctor is unwilling to assist in this, you can speak to the reception, the head of the department, the hospital manager or another hospital/clinic.

    5. You don’t have to comply with treatments or tests. This can be a bit more of a delicate area, as I have experienced myself in the past and the present. Let’s be clear, doctors do not normally like to be disobeyed or feel like their professional opinion is not right for you. I have had several doctors who have not taken too kindly to my refusal of a particular treatment. I am not proposing that you reject all medical treatment, but I am suggesting that

    4 reactions

    Running journey update - need advise

    So I had one of my worst runs ever today. I’m training for a Turkey trot 5k but I have severe asthma and some other breathing issues. My friend and I decided to go on a 4 mile run today bc I’ve been doing a lot better with the running and I was hoping that if I could go farther than the 3 miles, the day of I would be better. Well right off the bat my lungs were already a mess. I did my inhaler before I left as per usual and did it again about 1.75 miles in bc I was having a hard time. Then I produced so much mucus that I almost threw up a few times. The Turkey trot is less than a week away and I’m running it with another freind who ran track and is more than a foot taller than me. I’m really nervous bc I don’t want to hold him back and I want to enjoy the race. I’m not sure how I regressed so much today. It felt like before I even started training and I don’t know how to fix it. #Asthma #Exercise #CysticFibrosis (I don’t have CF but some of my symptoms have always been really similar so maybe someone can help me out?)

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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.