2 posts tagged “Emilie”

Getting to know our Team of Advisors – Karla

Posted February 9th, 2015 by

This past Monday on the blog, Emile shared about her fibromyalgia and what being a part of the PatientsLikeMe Team of Advisors means to her, including how she hopes to help doctors understand that patients need to be treated as individuals, rather than just disease names. Today, we’re featuring Karla. She’s also a member of the Team of Advisors living with fibromyalgia as well. Read below to learn Karla’s views on patient-centeredness, open communication and healthcare in a rural community.

About Karla (aka kam-turtle)
Karla refers to herself as a Southern Gram, who tries not to let her fibromyalgia get in the way of having fun with her grandkids. Karla served as president of a community college prior to retiring from full-time employment in 2010. She has led volunteer boards and fundraising groups, worked in public relations and advertising, and actively worked in a variety of roles in her church. She continues to work part-time as a grant writer, researcher, and owner of a chicken farm where she has a rooster named Handsome. 🙂

After spending a long time finding treatments that worked for her, Karla is passionate about helping others shorten the time between diagnosis and condition management, and she would like there to be better understanding that fibromyalgia is not a ‘one-size-fits-all’ condition.

Karla’s view of patient-centeredness
She believes patient-centered healthcare involves open communication between healthcare providers and the patient: “it should be an active and ongoing process to evolve the patient’s care toward results to create a more productive and comfortable lifestyle. It is a two-way communication stream based on mutual respect.”

Karla on being part of the Team of Advisors
Being a part of the PatientsLikeMe Team of Advisors is very humbling but also refreshing to my soul. At times when my illness is at its worst, I have always hoped my affliction could at least somehow benefit someone else, somewhere, even in the future. That is actually happening with the opportunity to be on the Team of Advisors. Like me, each team member is willing to share freely and openly in hopes of making the future better for others. It is so humbling to represent patients from so many walks of life and bring hope for a brighter tomorrow. The work PatientsLikeMe and the advisors have been doing can truly change the way health care functions.

Karla’s experience seeking care for fibro in a rural community
A decade ago, fibromyalgia was a foreign term in my rural community, even to me. Doctors dismissed me as stressed, depressed and overweight. Employers openly joked that people with chronic fatigue syndrome, bipolar and other hidden illnesses were lazy. One doctor said I had a ‘bucket condition’ or unknown problem. After two hospital stays, XRAYS, MRIs, CAT scans and three or four doctors later, I confided in a nurse practitioner who knew me. She knew me before I had spiraled down into a life of pain and she knew I was not faking. She suggested a condition called fibromyalgia and advised seeing a rheumatologist in a regional area. There I received the diagnosis of fibromyalgia. I was devastated and utterly embarrassed. I didn’t want to suffer the ridicule from the uninformed public. When I was too sick to work, I would call in but if I had a doctor appointment, I would generally take vacation time so no one at work would know I was traveling to the rheumatologist.

I desperately wanted to learn about fibromyalgia to see if there was a cure or at least proven ways to manage the pain and fatigue. Eventually I had to give up my career and focus on my health. My family became educated about the condition and they understood my situation. So, then I began to own my situation and share my story. Amazingly, as word got out, many neighbors in my area contacted me to share similar frustrations. Healthcare in rural areas is in short supply, doctors are overloaded, hospitals are money-making machines and patients are deliberately kept uninformed. I firmly believe if not for the concern and care of one nurse practitioner who knew me personally, I might still be switching from prescription to prescription with no answers.

Unfortunately, ten years later, fibromyalgia is still very misunderstood. Based on my experience, I have learned to share about my fibromyalgia life, to advocate for hidden and chronic illness, to educate people about fibromyalgia and to encourage those on a personal journey to keep fibro from taking over their lives!

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Getting to know our Team of Advisors – Emilie

Posted February 2nd, 2015 by

If you’ve been following the blog, you’ve already met three members of the PatientsLikeMe Team of Advisors – Dana who is living with bipolar II, Lisa who is living with Parkinson’s and Becky who is living with epilepsy. Now, we’d like to introduce Emilie, a social worker and therapist who is living with Sjogren’s Syndrome and fibromyalgia.

About Emilie (aka Memmie)
Emilie is a Licensed Clinical Social Worker (LCSW) who works with children living with chronic illnesses and their families. She’s also been a therapist for both children and adults with chronic illness and in her work has developed a pediatric diabetes pain management program. Emilie herself has an autoimmune disease, fibromyalgia — and recently had to resign from this work that she loves due to the pain, fatigue, and subsequent emotional strain. She hopes to return to doing similar work once her medical issues are more manageable.

Emilie on patient centeredness
Emilie believes the question should be asked, “what are the ways your health care provider(s) could be more helpful to you?” to better our understanding of patient centeredness. She believes that doctors need to listen to and respect that their patients know their bodies best.

Emilie on being part of the Team of Advisors
It was really special to be chosen, I didn’t ever in a million years think I would be chosen. When I got to the interview part I thought there’s no way they’ll pick me. When I found out I was chosen I was really excited because I felt like I had been to enough doctors in my life that I had something to share. I hoped that we could help researchers study the things that would be relevant to us — the collective us — instead of just the things they wanted to know and they wanted to study.

Being part of the Team of Advisors makes me feel like I’m more in control, like an expert about my own body. When you go to the doctor, they think they know exactly what’s happening — they’re going to treat it they way they treat everyone else with fibromyalgia or Sjogren’s or arthritis. It’s great to be able to have input to help doctors understand that we need to be treated as individuals and not like a disease name. Just because I have migraines, does not mean my migraines are the same as someone who just walked out of the exam room with migraines.

Others members on the site have contacted me because I’m on the Team of Advisors, and they’ve seen my picture or seen my name and have said “I’ve seen what you’re all doing, and I went to your page and I see you have some of the same things I do and I found you and I thought you could be a good resource for me.” So sometimes I’ve been able to help out and that has been nice.

Emilie on tracking on PLM
One of the things tracking my health on PatientsLikeMe has helped me recognize is that sometimes I think I’ve been feeling lousy forever — I think that’s easy for people with chronic pain to do — but when I look back at my InstantMe chart, I realize there are more days than I thought where I felt good. It gives me hope that things aren’t bad all of the time and that things can get better. When I go to my doctor and they ask me how things have been, I can tell them that things have been up and down, and sometimes there have been more good days than bad days.

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