Sunday, April 14, 2013

HAWMC Day 15: On being inspired.

Today I am detracting a bit from the prompt provided by Wego Health. The topic seemed to require way too much energy and cognitive work, which I don't have. See, reading is require concentration and memory. In contrast, writing requires thinking but that is much easier these days, not that I necessarily do it well, but I try.

Today’s Prompts:
  • Comment! Pick someone else’s blog post and write a comment to them. Write that comment as your post for today and link back to them to let them know you were inspired.
  • Participate in our guest post swap day. Email us ( by April 8th to be paired and we’ll connect you with another Health Activist.

So instead I am sharing a story that is likely to inspire others. It offer a lessons in not giving up and on thriving and helping others despite adversity.

Meet Spencer West, a fine young man who was born with un-usable legs- and got them amputated at age 5. While doctors told his parents at birth that he would be severely handicapped, and that he would never have a productive life, it was not Spencer's plans to do just that.

I don't want to tell the story- some have told it better. I am attaching links to articles and videos. Be inspired! Pay it forward. Nothing is impossible.


What drives Spencer West? (Look up for additional videos on the right side, they are worth it)
Finding inspiration and encouraging others despite huge disability
Additional You Tube Video

Saturday, April 13, 2013

HAWMC Day 14: Myalgic Encephalomyelitis Activist Heroes

M.E. Activists are a special kind. As patients, as if the illness wasn't harsh enough, we face stigma and government who do not get impressed quickly. And as non-patient, it takes much dedication to fight an impossible battle.

Today, I would like to highlight and thank 2 special M.E. activists who have been going the distance for all patients in the last few months.

Robert Miller is a long time patient who has taken on to speak up and walk the walk, so to speak. He has been receiving Ampligen on and off, a drug that has been stalling in clinical trials for over 2 decades. Just recently, the FDA refused approval of Ampligen once more, a blow for patients who have been helped by this drug and who have relapsed when off it. Robert has been fighting fiercely, literally risking his life by starting a hunger strike in order to get his voice heard on our behalf. Last news I heard about him he was in Washington DC for meetings with government officials.

Robert, I want to thank you and command you for your efforts. They do not go unnoticed. You are a hero! Bob is on Twitter: @bobmiller42

The second person I would like to highlight is journalist Llewellyn King, whose resume is quite impressive, and for fear to leave any important bits behind, I am copying from his White House Chronicles website, available here:

Llewellyn King’s long and remarkable career in journalism began in Southern Rhodesia (now Zimbabwe), where he was born and raised, as a 16-year-old foreign correspondent forTime, UPI and two London newspapers, The Daily Express and The News Chronicle.
Before starting his own publishing group, King worked for a pantheon of British and American media outlets. As editor in chief of The Energy Daily, King Publishing Group’s flagship newsletter, he became renowned for his incisive reporting and commentary on the energy industry, and for his public speaking panache.
In chronological order, here is how King’s career has unfolded:
London: Executive, The Daily Mirror Group; reporter, Associated Newspapers; scriptwriter, BBC and ITN
New York: Assistant editor, foreign desk, The New York Herald Tribune; founder, Women Now, a monthly magazine targeted to emerging businesswomen in the 1960s
Baltimore:Copy editor and feature writer, The Baltimore News-American
Washington, D.C.: Assistant foreign editor, assistant travel editor and culture editor, The Washington Daily News; assistant editor, The Washington Post; Washington editor, McGraw-Hill’s Nucleonics Week
Founder, publisher, editor in chief, The Energy Daily; chief executive officer, King Publishing Group, whose award-winning newsletters, almost all of which he founded, included The Energy Daily, Defense Week, Navy News & Undersea Report, New Technology Week, Food & Drink Daily and White House Weekly
Host, “The Bull & The Bear” on the GoodLife Television Network and Jones Television
Founder, executive producer and host, “White House Chronicle” on PBS; regular contributor, Voice of America; contributor, CNN, C-SPAN, PBS (“The NewsHour with Jim Lehrer”), NBC (“The Today Show,” “Meet The Press”), Westwood One (“The Jim Bohannon Show”), American University Radio (WAMU 88.5) and RTE (Ireland’s national radio and television broadcaster)
Regular commentary contributor to McClatchy newspapers; occasional contributor to newspapers and journals, including London’s Financial Times; and nationally syndicated columnist, North Star Writers Group
Author, “Washington and the World: 2001-2005” (University Press of America, 2006)
Stevens Institute of Technology awarded King an honorary doctorate in engineering, for his contribution to the public understanding of science and technology.
King has given more than 1,500 speeches, organized more than a thousand conferences, and traveled to over a hundred countries.
Mr King has a dear friend suffering with ME and decided to learn more about the disease and to get involved in the best way he knew, through journalism.

Mr King produced (and still producing) a serie of videos called ME/CFS Alert. They are short interview with physicians who treat us, researchers and even patients.  And more recently he has published a very touching piece about ME called Chronic Fatigue Syndrome: Hidden in Plain Sight and very worthy of your time.

Mr King, I cannot thank you enough for speaking up on behalf of millions around the world. You too are a hero.

Friday, April 12, 2013

HAWMC Day 13: A short poem

My disease sucks
Enormous stigma
Care, what care?
For governments refuse to fund research
So we are going nowhere.

(ME/cfs stands for myalgic encephalomyelitis, also known as chronic fatigue syndrome) 

Thursday, April 11, 2013

HAWMC Day 12: What I have learnt as a patient

I have been a nurse for nearly 20 years when I got sick in 2008. What I knew then about our socialized health care system was that everybody was taken care of.

See, I worked in labor and delivery. Women came in labor with their birth plan, they gave birth and they sent us candy. Happy moments, for the most part but not always. But everyone got served and got cared for. In fact, if there was no room for them to have a baby, they'd be diverted to another hospital, and occasionally even in the US, and our health care system would pay the tab.

In the latter part of my career, I worked in bone marrow transplant, then in an outpatient chemo unit. Oncology is health care on steroids. You need a MRI this week? You got it. It can take up to a year for non-cancer patients. One of the rare PET scanner resides at the cancer clinic.

You could see opulence in that hospital, thanks to private donors and public funding. Patients are well taken care of, for all of their needs. The nurse to patient ratio is high in every parts of the hospital. I made sure my patients were comfortable and well taken care of.

And then I got sick.

Throughout the 4.5 years I have been sick, I have learnt that not everybody is treated equal when it comes to health care.

The name of your disease matters. See, if your disease is called chronic fatigue syndrome, you are out of luck. Whether your diseases belongs or not to a medical specialty matters. Whether your disease belongs predominantly to one sex matters. Women's diseases are not served as well as diseases such as cardio-vascular, erectile dysfunction or sports injuries.

I have learnt that specialists do not want to treat patients outside their medical specialty, especially when it comes to chronic diseases. I think they get worried of getting stuck with us.

I have learnt that governments are not interested to fund myalgic encephalomyelitis, especially since it's been branded early on as a psychiatric illness (which it isn't) and that they'd rather fund diseases that makes them look good. It doesn't make sense. You can only understand this when you get sick with a wrong side disease.

I have also learnt, in no particular order
- to not believe everything that is being said out there.
- to not trust every scientific paper as being the absolute truth
- to trust your instincts and stick to your guns
- to take one day at a time
- to not expect instant results when advocating for your disease.
- listen to your body
- be nice to yourself
- keep distracted, keep your brain busy
- have a copy of your medical records
- don't forget to laugh. 

HAWMC Day 11: Chronic illness and Social Media.

Following the epidemics of ME in the mid 1980's, thousands found themselves housebound and bedbound, isolated, and with very little way to find likewise people to share experiences. Gradually support groups developed, but the housebound and bedbound were left behind.

Then came the world of internet. While it took at least a full decade to get patients connected, there is a wide variety of internet ressource, communities and social media available. Of course the very severly affected are unable to participate due to sensory overload.

While Facebook provide a great venue for mingling and provide support amd sharing of information, today I want to discuss the power of Twitter and what it can offer patients especially when it comes to advocacy and activism.

The most important features of Twitter is that nothing is private, except private messaging of course. In thhe light of advocacy, it's a good thing. When you send a tweet, it gets queued in all of your followers's feeds. This means that having a lot of followers is helpful in order to make the most out of Twitter. You can also expand who reads your tweets by adding someone or a geoup's handle, or by using the hanshtag sign #.

Briefly, the hashtag is used with keywords that are searchable on Twitter. For example, #mecfs or #fibro. #spoonie is used for all patients who have a limited amount of energy to live with. It encompasses diseases like lupus, rheumatoid arthritis, ME and FM, amongst others.

For an exhaustive list of commonly used hashtags in health care, please visit this link. It is best to use the most common hashtags to increase the chances that your tweets will be found and read. Also of interest for health activists are the hashtags used by and for journalists and politicians, medical and research organizations and government agencies. In Canada, #cdnpoli, #hcsmca and #cdnhealth are the main ones.

Tweet chats are also a great opportunity to mingle, bounce ideas and network. I find that using this link is a very good app for that purpose. There are all kinds of topics and schedules available here. If there is a big turnout, it can get a bit hectic and hard to keep up with the flow especially when one has cognitive dysfunction. I found that participating in more general tweet chats has allowed me to see a bigger picture, beyond my own illness. I have also been impressed with the variety of backgrounds in people showing up, and the moderators are usually very good to keep on topic.

To conclude, Twitter is a great tool to use, in my opinion, by all health activists.

Monday, April 8, 2013

HAWMC Day 9: On caregiving

Today's post is about caregiving. We are being asked to discuss what advice or tip we have for caregivers.

This is troublesome because other than my trustee cleaning ladies, I have no caregiver, and no one that looks after me. I am alone.

See I have always been the independent one. I left home for college at 18, and made do. I took on solo trips around the world with my bicycle and everything but the kitchen sink. I worked hard as a nurse, at first in labor and delivery and then with cancer patients, including bone marrow transplant. I enjoyed the one to one kind of nursing, building a rapport with my patients and giving all that I had.

And when illness hit at age 39, I was excited about my new goals, I still wanted to travel and bike, and on top of my nursing career I wanted to be a photographer. But then I got sick.

So here I am facing a chronic illness, a beast if you will, alone. Speaking of convenience, well, the fact that this illness is mostly worsened with all kinds of stimuli including light and sound, being alone is indeed convenient. I control the noise level, most of the time it is silent, no TV and no radio and my bedroom is as dark as a moonless night. I get by with my self care by carefully pacing and planning my activity and energy. When I feel terrible, I take the electric cart at the grocery store, and shower less often. I cook just a few times a week, and live off leftovers or frozen meals, or salads quickly put together. Should I get sicker, I can get my grocery delivered.

So caregiving from my point of view as a sick person with one of the most neglected diseases, is coming from my phyisicans. There has been some very good and some very bad. There is still some very good and some very bad.

Here are a few pointers for health care professionals dealing with a patient with myalgic encephalomyelitis. These very simple measures will help you connecting with your patient. You will do some good.

- Respect what your patient is saying. Believe him/her. If they say they need a wheelchair and cannot walk 20 feet, believe it's true. And if they even could, they are saving energy so they can talk to you.

- Listen to what your patient is saying. By listening, you are allowing healing to happen, and you can also get important clues as of what needs to happen next.

- Learn about myalgic encephalomyelitis (or to an extent, any disease that you are not familiar with). You'd be surprised to find out it is a complex and neglected disease and that the symptoms go beyond being tired.