48 posts tagged “Team of Advisors”

Meet Jacquie from the PatientsLikeMe Team of Advisors

Posted January 6th, 2017 by

Say hello to Jacquie (@Jacquie1961), another member of the 2016-2017 Team of Advisors. We chatted with Jacquie recently about how she lives with her condition and what it meant to become part of this year’s Team of Advisors; “Joining the team is allowing me to…help others who are newly diagnosed or those who think they have something wrong with them.”

Jacquie also opened up about her passion for animals, especially her dog, Roman: “He’s precious, loving, beautiful and really has the personality of a human.”

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

I would have to say I get the most joy out of being with my dog, he’s been the greatest addition to my life right before I was diagnosed. He’s precious, loving, beautiful and really has the personality of a “human.” Of course my new kitty is an added bonus of love and fun. All in all, I have a tremendous passion for animals.

What has it been like for you managing multiple conditions?

First off, I had Lung Cancer. Fast forward months, I have a new oncologist and stage 4 metastatic lung to colon cancer. I became the 13th documented case of such as it is highly rare. Every 3 months I have a maintenance plan of scans, blood work (that’s actually monthly) and colonoscopies as I have pre-cancerous polyps that must be removed before becoming cancer. The risk is too high, so that is my life with cancer. I chose this over a life of chemo. I have since my 20’s severe anxiety and panic disorder, my only maintenance on that is the highest dosage of Xanax 5x a day and pray I don’t get attacks. I have tried everything and there is no cure for anxiety like I have it, I would not wish a panic attack on my worst enemy. This is truly a disease that if you have never experienced it you would have no clue how horrible it is. Because of 14 months of intensive chemo my bones and joints have severe damage, especially my back. I go every 3-6 months, depending on the body part, for injections for the pain. THIS has really impacted my life. I can’t do the things I used to do, dance, hike, rake leaves, garden etc., because of the pain. My mornings begin with a good hour on my heating pad for my back just to be able to take a shower. This limits me in doing things on the spur of the moment and even getting to my shop on time. Every day I have to apply pain patches and take pain meds which I despise. But…such is my life, I deal with all of it, juggle all the bs and carry on. Top that off with coronary artery disease and stents, all due to the chemo. Never had heart issues. I won’t say this limits my life daily but it does long term now. I now have added regular cardiologist appointments, scans, tests, etc.

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 personal conditions only have the obstacles I myself place on me. Society only needs to be aware that we are all different and we should never judge a person by how they look, talk, walk, or live. Under the shell of someone could be a person who suffers greatly and maybe that scowl on the person’s face isn’t because they are nasty, maybe it’s because they are in horrible pain. Maybe they just got some more bad news about an already bad condition.

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

I would tell them to think of their worst headache and multiply it by 10, that is real pain. Imagine being in your car and you are suddenly underwater and you can’t get out, you can’t breathe. That is anxiety. The feeling of being trapped and unable to get out the panic attack that ensues is like an out-of-body experience where so much adrenaline is pumped, you are exhausted when the attack is over but relieved you didn’t pass out or die like you certainly thought you would. Having cancer in the midst of this was just another fight for life big panic attack that didn’t go away.

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

First of all, the word “chronic” needs to be redefined. Most conditions are not chronic, they are in a maintenance phase or they are lifelong conditions. However, I would always advise a second opinion. Once diagnosed, try and learn everything you can about your condition. Join a group like PatientsLikeMe where you can interact with others suffering and learning to cope with the same or like condition. Coping mechanisms are generally best learned from those who have been and are in the same shoes as you. Reach out and surround yourself with a support system, and most of all cherish that best friend. You will need him or her.

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

It was very hard until I found PatientsLikeMe, then it became easy. There were so many and so many far worse than me I could immerse myself in helping them which in turn helped me to cope and deal with my own issues. Someone always had it worse than me, someone was fighting to live with their last breath, and some do not live and become another statistic.

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

After my first cancer diagnosis I had an Oncologist who did NOTHING for me for 5 months when I begged every visit for help and told him how sick I was. I changed doctors and found out that my cancer had already metastasized. Once I became strong enough I became completely in control of my medical care, I pick up all of my own scan results, tests, etc. I make lists of questions, I google everything and I follow up with all doctors. Many times I have already diagnosed myself before seeing a doctor and that includes the dentist and the eye doctor. In 2015 I knew my father was not well, and his complaints of pain went ignored by all doctors for several years. I went to my oncologist and told her something is wrong with him, please figure it out. He had stage 4 non-Hodgkin’s lymphoma of the bone marrow. He is now in remission. How’s that for all these great doctors who told him he was just getting old?

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

Joining the team is allowing me to further my voice as a patient of several conditions. To help others who are newly diagnosed or those who think they have something wrong with them. To let them know they are not crazy, and not alone. I am also taking this opportunity to educate the doctors within my large medical circle that I am an example of the reason they became doctors. That my time is valuable, too. Sitting in your office and waiting for you for 5 hours is unacceptable. I have pain and it is an issue coming to see you. I am not just another number in your file cabinet.

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

Mostly I have been on the support side of PatientsLikeMe and try to help others. I have not used it as a tool to help me. I already know what I have and how I cope. But I must say there are days my coping skills don’t work very well, conversing to another member that is down and hurting and lifting them up puts my issues back into perspective. I’m still breathing, I’m still here.

What is it like to be you?

Why I ask myself that question I don’t know, maybe I am trying to understand what it is like to be me, I used to know and have an easy answer: it was great being me. Being me now is not always so great, but I am working on making my life better again. I have my new shop that, after my hurdles of getting there in the A.M., is a fun and rewarding place to be. I struggle with issues I have with my brothers. Aren’t they supposed to care about me not just when I am labeled as “sick and dying” but always? Do I expect too much? I think when one goes through so much and continues to constantly have to fight to keep a balance but never gets the balance it’s easy to fall into this abyss of “why me,” so I do my best to stay above that hole. I don’t ask “why me,” because there are no answers. I’m simply a good, driven person who wants to be happy, to help others, to enjoy my days, have fun like I used to and travel freely like I used to. I have a lot of “used to’s” I want back, maybe I should just live with who I am now but I refuse to give up or give in. There are ways I will feel better and I will find them. I got dealt a lousy deck of cards so I have to reshuffle now and deal another deck and make the best of it.

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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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