6 posts from July, 2013

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

Posted July 7th, 2013 by

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.

Lori

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 (and remain) incredibly helpful. I started my own blog as a way to make sense of what was happening to me. I’ve been a writer all of my life and the blog is my way of “talking it through.” I also see the blog as a way to give back to the amazing PF community. I hope that by sharing my experiences and passing along information, I’ll be able to help others cope with all that PF entails.

The response to my blog has been more than I ever hoped for. It’s a great way for me to keep family and friends abreast of what’s happening to me without managing an email list. Plus, other bloggers have discovered me and through them, I have also found several excellent blogs. Through the comments section, other PFers are sharing some really helpful insights for the whole community. And I love that we can all share a laugh or two about the craziness of our daily routines. What I’m happiest about, though, is that several readers have told me they forward some of my posts to others who they think might benefit from the message. IPF may be the source of my struggle, but what I go through on a daily basis isn’t unique. Fear, uncertainty, anger, stress, joy, motivation – these are the issues I deal with in my blog and they are universal.

When did you first know that something wasn’t quite right? Do you remember what your first sign or symptom was?
I was diagnosed officially in September of 2011. About 2 years before that, I started noticing shortness of breath when I climbed a flight of stairs or walked quickly. I shrugged it off as being overweight and out of shape. The shortness of breath continued to increase and my doctor prescribed a Flovent inhaler, figuring this was some kind of asthma or reactive airway condition. The Flovent didn’t help, and about a year later I developed a dry cough. It wasn’t much to start with, but over the next several months it got worse. I sucked on cough drops all day every day, and frequently coughed until I vomited. By the summer of 2011, I was so short of breath when I walked that I’d have to sit down and gasp for a while.

We’ve spoken to others with rare lung disease that had a hard time finding an official diagnosis. Was that your experience too?
Getting someone to understand that my symptoms went way beyond mild asthma was a long and arduous process. Even I had a hard time thinking it was anything more that just poor fitness and extra weight. But the coughing had gotten so bad that it was affecting my quality of life – I worried constantly that a coughing fit would cause me to vomit in public. My allergist thought the cough was caused by medication and started switching things around. As an afterthought, he ordered an x-ray. That’s when everyone saw the infiltrates throughout both of my lungs.

I didn’t know what infiltrates were, but I knew they were bad, so I got online and started researching pulmonologists. I wanted an experienced diagnostician who would help figure this out. I was fortunate because I unknowingly chose a doctor who belongs to the only non-university based IPF research center in the country. He ran extensive tests on me and did an open-lung biopsy to confirm the diagnosis. I talked with him extensively about his experience and felt comfortable that not only was he extremely knowledgeable about IPF, but that he would be an active partner with me as I learned how to manage and live with the disease.

That’s my biggest piece of advice to anyone – do your research and find a doctor who understands the disease. You may have to travel a bit to find him/her, but your life is worth it.

You titled one of your recent blog posts, “Retooling My Attitude.” Can you tell us about that?
On the surface, “Retooling My Attitude” is an homage to my grabber. I’d been thinking about getting a grabber for a long time – to retrieve things off the top shelf or recover socks that some how wound up behind the dryer. After I got sick, when I realized that simple tasks like picking up my bedroom were getting more and more difficult, I saw the grabber as more than just a simple convenience. Suddenly, it was a tool that offered me a little bit of control in an out of control situation. My disease has given me a new perspective on many elements of my life, and that provides fodder for much of what I write about. It’s also shown me that a good laugh can brighten even the darkest day, and so I also try to inject as much humor into my posts as I can.

It looks like you have quite a following on your blog. How do you think connecting on a blog or through an online community like PatientsLikeMe can help others with IPF?
From the beginning, I’ve been impressed with how warm, strong and supportive the pulmonary fibrosis community is. With the help of online locations such as PatientsLikeMe, I have friends across the globe who are always available to offer insights about everything from potential side-effects with a new medication to ideas for dealing with painful muscle spasms. It’s also really comforting to be able to connect with people who understand exactly what I’m going through, like the guilt that comes along with being “the sick one” in a family. And it’s nice to know that I’m not the only one who manages to get my cannula caught in the oven door!


Psoriasis in spring: what we’ve learned

Posted July 3rd, 2013 by

Spring has sprung, and for most people that means coming out from winter hibernation, shedding the layers and uncovering their psoriasis. As a part of our regular series, we conducted a survey of the PatientsLikeMe psoriasis community from March through June, receiving responses from over 300 patients. We asked everything from “How do allergies affect your psoriasis?” to “Does your psoriasis impact your spring clothing choices?”

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What’s your skinpact?
The Dermatology Life Quality Index (DLQI) is used to measure the “skinpact” that psoriasis can have on patients. It asks questions like “How self-conscious are you because of your skin”, “How much has psoriasis interfered with your personal activities”, or “Does your skin condition affect your ability to do sports?” The questionnaire runs from a low score of 0 (no impact) to a maximum of 30 (extremely large impact). This season the average skinpact in our spring survey was just below 9. The average for male’s was slightly lower than female’s (8.2 versus 8.8, respectively).

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To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis. Don’t miss this in-depth look at how our psoriasis patients rated their “skinpact” this spring along with what specific factors can increase it, from age to the location of an outbreak to the percentage of the body covered with itchy, red plaques (a measurement known as the Body Surface Area or BSA score).

Interested in other seasonal psoriasis insights?  Find tips about living with psoriasis during the winter in our previous report.

Want to connect and learn from psoriasis patients like you?

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