49 posts tagged “Team of Advisors”

Meet Glenda from the PatientsLikeMe Team of Advisors

Posted December 29th, 2016 by

 

Meet Glenda (gagafor2), a member of the 2016-2017 Team of Advisors. Glenda is a wife, mother and grandmother who finds great joy in making others happy. She’s also living with idiopathic pulmonary fibrosis (IPF).

Recently, Glenda told us about coming to terms with the “unknown” in her future and coping with anxiety: “PatientsLikeMe became my lifeline to information and patients who knew what I wanted and needed to know.” Check out the rest of her story and learn how Glenda hopes to represent other members of the IPF community.

What gives you the greatest joy and puts a smile on your face?

I would have to say making others happy makes me smile. I love to give and do special things for others, it gives me great joy I get so excited when I can find that special gift or plan that special surprise for someone else. My family gives me the greatest joy of all. I have had a wild ride so far with my husband of 45 years and my children and grandchildren. We moved many times throughout the last forty years to different parts of the country, making so many incredible friends and have having such wonderful memories. Yes, I still print out some of my photos just to pass on to my children and granddaughters so they can also look at, hold, and remember all the great memories that will live on throughout time. I am a pretty sentimental person. Our little granddaughters six and nine are so much fun and they give me a reason to fight with all I have and to live my life the best I can.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My greatest obstacle with being diagnosed with a terminal illness is the unknown. Not knowing to me like being in a dark room trying to find my way around, just stumbling around seeking help. Most of my family and friends always tell me “you look so good.” Yes, I do look good, makeup, hair color, and clothes can paint a pretty picture. Inside is the emotional and physical picture they do not see, nor the frightening experience of the what ifs that can happen at any time. Now I try to look at the whole picture of a person and have great empathy with what is going on with them.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

Living with idiopathic pulmonary fibrosis is a day by day experience. Sometimes when it is hard to breathe or get a good breath it is frightening and I need to calm myself and do my pursed lips breathing to get my center and not let the anxiety run away with me. I also have generalized anxiety. One of my biggest fears has always been not being able to breathe and yes here I am diagnosed with something that can throw me off the cliff big time

Most days are good and I go on taking it one day at a time, even knowing it is a progressive disease and could change at any time with an exacerbation. I have become germ phobic trying not to get an infection or virus to cause a decline. My husband and I own our own business so I still work, now on a reduced schedule. Fatigue is sometimes overwhelming and keeps me from getting together with friends and social events as I used to. Every three months I go for pulmonary function tests which give me great anxiety before I get to the hospital to do the test. I am so afraid each time I take them that my numbers will decline. I know I cannot do a cram study for pulmonary function tests, but I do tend to over think the whole procedure for fear of lower numbers. I do take one of two medications approved in 2014 that can slow the progression of IPF in some people. Right now, I receive help paying for the drug, ($96,000 a year) but next year I will go on Medicare so that gives me financial worry also. I have heard of patients not having insurance or being able to afford the cost of these drugs, which makes me angry and sad. Something needs to change for people who need these kinds of medications.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

When I was diagnosed with interstitial lung disease I was not given much information or why I might have gotten it. I began to look on the internet to find out what I might have. I learned that IFP was the worst kind of interstitial lung disease with no cure and a life expectancy of 2-5 years.  Boy, did I have a huge panic attack, checking into the ER. I then had testing done to confirm what I had, and then getting a phone call at work telling me I had IPF. It was so traumatic to be told this over the phone with no explanation just to wait until my next appointment in 2 months.

How important has it been to you to find other people with your condition who understand what you’re going through?

PatientsLikeMe became my lifeline to information and patients who knew what I wanted and needed to know. This amazing site gave me information, advice, and hope. Please get all the information you can so you will know the right questions to ask your doctor. I have found through my own experiences in the health care system you need to be proactive and not reactive with your health and the information you need. Please go seek supports groups and places like PLM to speak with others who have already experienced what you are going through. Then pay it forward to someone else who is newly diagnosed. We all need each other. 

Recount a time when you’ve had to advocate for yourself with your <provider, caregiver, insurer, someone else>.

A few years ago, I became very sick not able to function at all. I gave my symptoms to my physician over and over without him getting to the exact cause. This went on for a year. My doctor became impatient and annoyed with me, making me feel like a stubborn patient because I kept coming back not getting any better. I finally asked him “would you like me to see another doctor?” I don’t believe he had ever been asked that question before. I did change physicians and we finally got to the bottom of the problem. We only have one body and we are the only ones who can advocate for the best treatment we can get. I try to learn as much as I can before I visit a physician so I know the right procedures and questions to ask. I don’t like to think we are just numbers but sadly it can be that way. I have found that going in the hospital requires someone on your behalf to monitor everything being done and given to the patient.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

PatientsLikeMe gave me the hope and compassion I needed at a time I was sinking in despair. Just being diagnosed with a terminal illness is a lot to handle on your own. I immediately connected with other IPF patients who gave me sympathy but also hope. A dear friend I met sent me a book of scriptures she said she wanted to pay for and send. What an angel she has been. Then there are the friends who know so much I just can’t pick their brain enough. It is a 24/7 online support group when you need it. It has given me information to make wise choices about medication to choose, supplements to take, and ways to cope. They have helped me beyond words; I wish I could name them all but just too many. I now hope to carry the torch forward for those who are newly diagnosed to those who are further along the road we travel.

How can we make our health care work better for us?  

Tell everyone about PatientsLikeMe, how we can connect and share with other patients, put in our test results, and know how to talk to our doctors and providers while being more informed.

What made you want to join the PatientsLikeMe Team of Advisors?

The only thing I know is that I wanted to make people aware of the PatientsLikeMe website. I did not expect to be chosen. I am not eloquent at putting my thoughts in writing, nor the most informed patient. I’m just an average person who got diagnosed with a chronic illness who wants to let others know how much I rely on communicating and sharing information. I was shocked when I received the notice I was chosen.  It was only during my trip to meet my fellow advisors that it came to me why. I want patent health care to get better, patients to be more informed. I love having all the data in one place and available to share. I love being able to enter every lab test, pulmonary test and medication so all can see and compare to each other giving us the ability to make informed decisions. I value each person on the site and their willingness to share their experience, data, and all other aspects of their health care. I am an informed patient now able to have a conversation with my physician on a higher level of understanding because of PatientsLikeMe.

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Meet Laura from the PatientsLikeMe Team of Advisors

Posted December 22nd, 2016 by

 

Say hello to Laura (thisdiva99), another member of your 2016-2017 Team of Advisors. Laura chatted with us about what it’s like to live with bipolar disorder and why she thinks it’s essential to find and connect with others who live with the same condition: “It is of the utmost importance to connect with other Bipolar Warriors. Mental illness can be very isolating.”

Laura also shared some details about her background as a professional opera singer. She’s performed all over the world and has even won a Grammy! Get to know Laura and read her advice for others who are living with chronic conditions.

What gives you the greatest joy and puts a smile on your face?

Hearing the laughter of my husband, my nieces, and my nephews brings me ultimate joy.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My greatest obstacle in living with bipolar disorder is having to pretend that I am “OK” all the time. People with mental illness often find that they must hide their symptoms, and live in a quiet kind of agony of the mind, so that their friends won’t leave them, or so that they can keep their jobs. Living with bipolar disorder means constantly proving to the world that I am capable and worthy, that I am more than a bag of symptoms I constantly try to keep behind my back. I have been pretending to be OK for so long now that sometimes I don’t know where the pretending ends and my true self begins. I believe that education is KEY in bringing an end to stigma. Speaking openly about something lessens the fear and misinformation surrounding that thing.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

Bipolar disorder is an illness of opposites. I can go through weeks or months of crying constantly, sleeping all the time, and then escalate to feeling nothing at all. I want to die just so that the sadness and nothingness will stop. Then I swing up into mania, where I need very little sleep, I over-schedule myself and include myself in too many projects, and get more angry and frustrated. Eventually I want to smash everything around me, including my own head. When I’m lucky, I have brief periods of stability between depression and mania.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

You are worthy of love. You are worthy of feeling better. You did nothing wrong. You do not “deserve this.” You are not being punished. You just need to work with your family, friends, and treaters to find love and peace in yourself again.

How important has it been to you to find other people with your condition who understand what you’re going through?

It is of the utmost importance to connect with other Bipolar Warriors. Mental illness can be very isolating. Even though I have many friends and family who want to help (and often do!), sometimes you just need to speak with someone who knows what the bipolar roller coaster is like.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

Not too long ago, I had to advocate for myself with my mother. My parents are my greatest allies and have been through everything with me. But my parents have also instilled in me the need to “pull myself together,” because “the show must go on” (we are a family of performers). Recently, my mother became exasperated with how I was feeling, and how I was reacting to my illness. I had to stop and tell her that even though I love her more than anything, bipolar disorder is not something that can be shoved to the side. It is not an illness that can be put in a box and left until it is more convenient. It infiltrates my brain every second of every day,  and I will never stop working with it, and trying to live with it. Advocacy is really just about education, and I think that that is something that we can do every day of our lives.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

PatientsLikeMe has shown me that I am capable of far more than I truly believe. It is so incredible to me that while other members of the community deal with horrible circumstances throughout their day, they can still take the time to offer me comfort or encouragement if I need it. PatientsLikeMe reminds me that I am allowed to be vulnerable or fragile at times, but that does not define me. It is part of the greater scheme and strength of having a chronic illness.

What are three things that we would be surprised to know about you?

  1. I am a professional opera singer. I have performed all over the world, recorded film scores, sung backup for James Taylor, sung at Superbowls and Red Sox games, and I am a Grammy award winner.
  2. I started reading when I was three years old, and I never stopped! I love the written word…especially Victorian Literature.
  3. I am a total geek…I love all things Star Trek, Star Wars, Doctor Who, and on and on and on!

What made you want to join the PatientsLikeMe Team of Advisors?

I love PatientsLikeMe, and I love helping people. When I was given the opportunity to combine those two things through the Team of Advisors, I jumped at the chance! It is so humbling and fulfilling when people bring you into their lives, and every encounter teaches me great lessons. My mother likes to say to me, “You have a big mouth; use it for good!” I hope that being a member of the Team of Advisors is doing just that.

 

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