patient blogger

“Life is good” – PatientsLikeMe community member John_R speaks about his new life after being diagnosed with pulmonary fibrosis

Several people in the PatientsLikeMe community use the phrase “new normal” after being diagnosed with pulmonary fibrosis (PF), and PF member John_R doesn’t’ think his new normal is all bad. This month, he chatted with us about getting diagnosed with PF, bringing oxygen to the workplace, and how living with his Sweetie keeps him focused on the positive moments of his journey. You were recently diagnosed with PF in 2013 – can you tell us a little about your diagnosis experience? I was initially diagnosed with PF back in 2002 via a CAT scan with contrast. Around 2000, some haziness was seen on an x-ray, and my doctor recommended that I see a pulmonologist. I was getting ready to move to Texas, so I waited until I settled down and found a new GP. It was after my first physical with my new doctor that I was sent to see a pulmonologist. He sent me for a series of CAT scans from April of ‘02 to Jan ’03. The first scan indicated “There are several patchy areas of infiltrate identified peripherally in both lungs. These are identified at the anterior and lateral upper lobes as well as in both lower lobes. Mild patchy infiltrate …

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“MS cannot stop you from living your life and following your dreams” – an interview with patient advocate and PatientsLikeMe member Starla Espinoza

Multiple Sclerosis Awareness Month is fast approaching in March, but we just couldn’t wait until then to share our recent interview with patient advocate and PatientsLikeMe member Starla Espinoza, also known as baebae. On top of being a PatientsLikeMe member since 2007, tracking her health and sharing experiences with the community, she’s also a blogger and big advocate for raising MS awareness all year round. Check out what she had to say about her supportive family, her passion for MS awareness and the simple pleasure of riding a motorcycle.       Can you remember what your first signs or symptoms were? And what was your diagnosis experience like?   My first significant symptom was a buzzing sensation in my left hip. I always describe it as “a microscopic bee or hummingbird” trapped in my hip that is desperately trying to escape. It was the strangest feeling, especially since I didn’t know what was going on. My diagnosis took almost a year from the time that the buzzing in my hip started. I had more symptoms like numbness from the waist down, a tight gripping sensation around my midsection (MS hug), and dizziness for 6 weeks, just to name a few. Within …

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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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“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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“I choose hope.” Interview with Multiple Sclerosis Blogger Tricia

In 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 Tricia who’s writing about her journey with multiple sclerosis (MS) on her blog Love My MS Life. Some of you may know her on PatientsLikeMe as jakesmama. Check out her full interview below where she talks about the impact of connecting with others and why it took 11 years to get a diagnosis. Why did you start blogging about your journey with MS and how has the community reacted? I started blogging about my journey with MS last year. I’ve had MS for over 20 years and have been an avid fundraiser, MS Champion and MS Advocate ever since. My goal was/is to share my experiences with others living with MS to hopefully inspire and encourage them, while “telling it like it is.” The reaction has been wonderful! When I hear people tell me they relate to my experiences because they “get it,” it makes me feel like I’m doing something good for others that share this disease.   In one of your posts, you mention …

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

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 Sarah and Keith. Sarah started writing about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath. In this first part of our three-part series, Keith and Sarah talk about why they started blogging, and the difficulties of finding the right diagnosis. What prompted you to start blogging about Keith’s journey and what’s the reaction been?  [Sarah] When Keith’s health took a turn for the worse in the winter of 2011, I asked him repeatedly if he would allow me to share his story, knowing that we were likely going down a very difficult road, and selfishly wanting lots of support while we (I) went down that road. He wasn’t comfortable sharing until the day we drove away from his respirologist’s office, after an appointment where the doctor said that Keith was “fine,” wasn’t a candidate for transplant, and didn’t need to be on oxygen. We knew different. I blogged, we got a second opinion, and …

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My War with Psoriasis: An Interview with British Blogger Simon

Welcome to the latest installment of our “Spotlighted Blogger” series.  Earlier this year, we focused on psoriasis bloggers, including Lissa, Alisha B., Jessica and Joni, and today we’re pleased to add a male perspective to the mix.  PatientsLikeMe member Simon’s witty blog, entitled My Skin and I, discusses his decade-long battle with psoriasis, a chronic autoimmune condition that can cause itching, rashes and plaques.  What has he learned along the way?  Find out that and more in our interview. 1.     Why did you start blogging about psoriasis, and what’s the reaction been? I started blogging as a way to vent my feelings. I don’t really talk about my feelings, even to my family, and found it very hard to explain what was going on in my head and in my life. When I spoke to people about psoriasis, I kept a lot back and, to write it, even if I hadn’t published it, was a release. I decided to make it public partly as I needed my family to understand what I had been going through and also to help raise awareness. The reaction has been positive.  I have been told I made a few people cry and even had other friends suddenly announce they also …

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Spotlighted Author: Parkinson’s Humorist Bev Ribaudo on Dispensing Laughter

PatientsLikeMe member Bev Ribaudo (“YumaBev”) was diagnosed with Parkinson’s disease (PD) at age 47, but it hasn’t dampened her flair for comedy.  “Humor comes naturally to me, and a little disease like Parkinson’s can’t take it away,” she says. In fact, her condition has given her a new purpose:  entertaining other “Parkies” with her deep reservoir of funny stories.  She began a blog called Parkinson’s Humor, and most recently, she’s collected the tales from her blog into a book, Parkinson’s Humor:  Funny Stories about My Life with Parkinson’s (available in paperback and Kindle editions).  Find out what she’s gotten out of sharing her sense of humor in our interview. 1. Tell us about the role that humor plays in your life – and why it’s so important. Humor has always been a part of my life. Both of my parents had good senses of humor; they needed it with five accident-prone kids. I had a lot of tragedy in my life when I was young – my first husband died in a car crash when I was 23 and my mother died of lung cancer 15 months later. She used to joke about her bald head (from chemo) and pretty …

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How Social Media Is Changing Research (Part II): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell

Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years.  A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me:  My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.”  Her patient advocacy and social media presence led to her being invited to speak the Disruptive Innovations conference taking place in Boston this week. Read Part I of Jeri’s guest post first! Because blogging a clinical trial from start to finish was unheard of, I attracted the interest of not only patients, but those in charge of clinical trials. They are interested in the impact of social media on clinical trials, and how they can utilize it to their benefit. Sites such as personal blogs, Facebook, Twitter, and PatientsLikeMe are here to stay and people naturally want to share information. I got a direct message on Twitter from Craig Lipset, who is Head of Clinical Innovation, Worldwide Research & Development for Pfizer. Social media brought us together to have a conversation about research that never could have taken place before the Internet. Everyone is more connected and approachable now. Naturally, …

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How Social Media Is Changing Research (Part I): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell

Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years.  A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me:  My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.”  Her patient advocacy and social media presence led to her being invited to speak the Disruptive Innovations conference taking place in Boston this week. One rainy day in April 2007, I was lying in bed, staring at the ceiling, talking myself out of suicide. I was having another MS relapse. This time it was attacking the part of my brain responsible for controlling emotion. As a result I was having panic attacks almost daily. Along with the emotional issues, I was also having trouble walking and horrible spasticity. I had been diagnosed with MS for eight years at that point and, although I was on one of the FDA approved treatments, I was continuing to relapse three to four times a year. It felt like standing in the ocean; every time I would stand up and catch my breath, another “wave” of MS knocked me back down. …

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