patient interview

A life well lived: Giving and sharing with PatientsLikeMe member Geof

At PatientsLikeMe, we believe that the patient voice is what can change healthcare for good, so we’re always excited when our members take the time to talk about their personal stories with the community. This week, Geof, a PatientsLikeMe multiple sclerosis (MS) community member with a big heart and an even bigger family, shared his health journey, his philosophy on giving, and the meaning behind his username life well lived. When were you first diagnosed with MS? What was it like? How did it impact your day-to-day life? To be honest, when I was diagnosed, it was a relief. For months I had headaches which only went away with sleep. The worst part was having them wake me up in the middle of the night. I wanted to scream, “Body! Why are you waking me up to tell me to sleep?” Then came the dizziness, and finally the double vision. I was able to get an MRI, but I was having trouble getting an appointment with a neurologist (my primary care physician said I needed one when he ordered the MRI). The radiologist said the results could only be released to my doctor. So naturally, after thinking about it for …

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“Sleep has become a process.” Checking in with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

Some of you probably remember seeing her on the PatientsLikeMe blog before. Lori is living with idiopathic pulmonary fibrosis, and when we first chatted with her last July, she shared her experiences with blogging, the difficulty in finding the right diagnosis and how connecting with others has positively impacted her life. For our “Are You Sleeping?” initiative, the PatientsLikeMe community is taking a closer look at how sleep impacts our health, but also how our health affects sleep. Check out what Lori has to say about it in our follow-up interview with her. Don’t forget to check out Lori’s blog too, called Reality Gasps. She balances stories of her daily struggles with dashes of humor that can make anyone laugh. How have you been doing since the last time we talked? It looks like you said on your blog that you broke an ankle?!   I did break my ankle and had to have surgery to put in a plate and 8 screws! I had refilled the bubbler on my concentrator and didn’t realize I hadn’t screwed it back on just right. As a result, I wasn’t getting enough oxygen and when I stood up, my sats dropped quickly.  I collapsed …

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“My new normal.” PatientsLikeMe member Jeff tells his personal journey with interstitial lung disease

Have you met PatientsLikeMe member Jeff, also known as NinerFan? He has been living with interstitial lung disease (ILD) since 2004 and he recently took some time to share his journey with us. He spoke about everything from getting diagnosed to being a newlywed, and gave a great list of advice for others going through a similar health experience. In Dec 2004 we decided to move to another apartment and I was becoming so short of breath I couldn’t take it. I was 37 and had gotten into the best shape of my life that year, so I knew that there was something wrong. I was getting night sweats and coughing, so I figured maybe bronchitis or something. My primary care physician (PCP) sent me for X-rays and they came back abnormal, not really viable because I could not take deep enough breaths, so I went for a CT scan. That’s when I first heard the term ILD and I was scheduled to see a pulmonologist. I did some web searching and got really worried. A week later the pulmonologist was arranging a biopsy. I didn’t understand why, but we did it. I had my case sent to a specialist at …

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“Retooling my attitude.” An interview with idiopathic pulmonary fibrosis patient & PatientsLikeMe member Lori

As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Lori, an idiopathic pulmonary fibrosis (IPF) patient who started blogging about her journey back in October 2011. Her blog is called Reality Gasps and she balances stories of her daily struggles with dashes of humor that can make anyone smile. If Lori sounds familiar to some of you, it’s because she’s also part of the PatientsLikeMe community.  She recently took some time to talk with us about why she started blogging, the difficulty in finding a diagnosis and how connecting with others has positively impacted her life. What made you decide to start blogging about your experience? What’s been the community response? When I was first diagnosed with IPF, I started researching online (like everyone else). The medical sites gave me an idea of what was happening to my body, but they said nothing about how to live with this disease – and when I really thought about it, that’s what I needed. So, I turned to blogs written by other patients and caregivers. They were …

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“It’s all about attitude.” An interview with multiple sclerosis patient and PatientsLikeMe member Alys

Have you met Alys yet? Some of you may know her on PatientsLikeMe as browneyedgirl3. Alys was diagnosed with multiple sclerosis (MS) back in 1987 and has been sharing her own personal health journey on PatientsLikeMe since 2009. She recently took some time to talk to us about her diagnosis, staying optimistic and what inspired her to write a book. Can you tell us a little about your experience with MS? What your first symptoms were and when you were diagnosed? I didn’t give MS much thought until I was forced to examine the disease on a personal level. I began having symptoms at age 16. I initially had sensory symptoms like numbness, pain, burning, vertigo and fatigue. The headaches were unpredictable but I would just excuse them as typical teenage stresses. The blurry vision was a bother as well. I was diagnosed November 18, 1987 while working as a registered nurse (RN). I was 21 years old.  I was the charge nurse that night so I was busy and exhausted. Suddenly, I was discovering what many people with MS are dealing with on a daily basis and I didn’t like it! I began to encounter symptoms at an age …

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Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”

Over the last few months, Keith and Sarah have been sharing their journey with us. In this final interview of our three-part series, they talk about how he got on a transplant list and their “phones at the dinner table” policy. If you missed our first two interviews with Keith and Sarah, you can find them here. What did you have to do to get on a transplant list? Did you have to meet certain criteria? [Keith] The transplant assessment process is an intense and very time-consuming one. When you are contacted about being assessed for transplant, you are sent a large envelope listing out a weeks worth of testing, doctors visits, and appointments in Toronto at Toronto General Hospital. The hospital evaluates you on many things, and ultimately if you are deemed “healthy” enough (because you can actually be too sick, or too healthy) as a result of this testing, you are placed on the list. There were psychological assessments, nuclear cardiac testing, liver testing, kidney testing, pulmonary function testing, physical testing, blood tests (LOTS of blood tests) to name a few. Can you talk about your “phones at the dinner table” policy and how it changed? [Sarah] Phones …

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Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”

In this second interview of our three-part series, Keith and Sarah talk about how their daily lives changed and the importance of connecting with others. If you missed our first interview with Keith and Sarah, you can find it here. What were the most noticeable changes you had to make in your daily life? [Keith] My ability to enjoy time with family was impaired because I could no longer be active with my children or my wife. I could not work because when I tried to do the simplest task, I became out of breath. I could no longer carry a toolbox, go up a set of stairs, or do everyday tasks at home without becoming winded and requiring rest. I wanted to rest all the time and was never comfortable. As a caregiver, what things could you do to help Keith the most? [Sarah] Keith eventually got to the point where he needed me for many personal tasks as well as taking care of all of the home tasks. I showered him, and took over our business, and we hired a cleaning service every two weeks to try to keep the house in order. Keith really needed to know that I was there for …

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Finding Peace, Confidence and Lifelong Friends: An Interview with Psoriasis Patient Erica

Of all the psoriasis patients we’ve interviewed, Erica was hit by this highly stigmatized autoimmune condition the earliest – she developed visible symptoms at the tender age of 9.  Now 21, she shares her decade-plus journey from being the girl that people avoided in school to an increasingly confident young woman who has finally started meeting others like her, people who are also living with the daily challenges of psoriasis.  What difference has that made for her?  And how has she started to take control of her treatment course as of late?  Find out that and much more in this inspiring interview. 1. Tell us how you were treated by classmates and school nurses growing up.   The first few years were the hardest, trying to understand the disease and how it affected me. It was hard to explain to others, since they didn’t really want to listen. Most of my classmates avoided me because they were afraid they would catch it, no matter how many times I would explain it they never believed me. I was sent to the nurse a lot because I’d scratch my head or my arms till they bled. The nurses never wanted to deal …

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A Good Surprise: An Interview with Fibromyalgia Member DarkAuburn

Did you know we now have more than 30,000 members in our fibromyalgia community?  In honor of this major milestone, we decided to interview DarkAuburn, who joined in 2009.  She’s a three-star member, which means she’s earned our top star rating for sharing complete, in-depth information about her fibromyalgia symptoms, treatments, quality of life and much more.  In addition, she has opted for a public profile, which means that anyone on the Internet (whether a PatientsLikeMe member or not) can learn from her detailed condition history.  Check out our interview with this veteran member below. 1. Tell us a little about the PatientsLikeMe fibromyalgia community. I was not expecting much when I found the site. I thought it would be more of an informational, non-involvement sort of site. I was surprised, as in a good surprise. I don’t know many people where I live that have fibromyalgia, and I didn’t realize how welcoming this site would be. I found people who, like me, wanted answers. The sharing of information and support was a nice thing to find. 2. What’s it like to have access to the experiences and data of tens of thousands of other fibromyalgia patients? It’s staggering. I …

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Searching for a Diagnosis: An Interview with Lyme Disease Patient Pampe

Getting the right diagnosis can take many years, or in the case of PatientsLikeMe patient Pampe, many decades.  After experiencing her first Lyme disease symptom in 1973, it was not until 2012 that she finally received a diagnosis that explained her many symptoms.  Discover what hindered the process and what’s she learned along the way in our interview with this highly active member, who has contributed more than 12,000 posts to our forum since joining PatientsLikeMe in 2010. 1.  You had a very long journey to discovering your Lyme disease. Where were some of the obstacles? The main obstacle to an appropriate diagnosis of Lyme disease for me was the lack of knowledge in the traditional Western Medical System. Had my general practitioner (GP) known about the testing for Lyme, I might have been diagnosed 10-12 years earlier. Many people go from doctor to doctor and undergo a horrific array of tests and medications before they find out it is Lyme disease. 2.  We have a new Lyme Disease Forum at PatientsLikeMe. What is that important to you? After my diagnosis and two other members of the Fibromyalgia Forum discovering they too had Lyme, I think I was pretty vocal …

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