Tweeting Links to Research Studies

When I decided to use Twitter I thought that tweeting a link every morning to a paper or abstract about Rheumatoid Arthritis would be useful to others and a way to contribute to the conversation. There is so much new information coming out always that staying current is a problem for everyone.

That plan has worked out well. I can stay abreast of what's new and it's easy to share on Twitter. You might wonder how I choose among all the new papers. It's easy - I pick what interests me. Here are some reasons for avoiding certain topics.

First I don't post animal tests because I want to find knowledge that is closer to being applicable to people like me.

We could test on this rat

Second I need to have at least some understanding of the subject matter. That's why I did not post this one:
Rho-GTPase signaling in leukocyte extravasation: An endothelial point of view.  

Extravasation?

Third, case studies don't seem broadly relevant to me as a patient.

Finally I want to learn something from the links I find, even if it's only a small insight or fact.

Here's an example of a study I plan to Tweet: 

A proof-of-concept study of ANSWER, a web-based methotrexate decision aid for patients with rheumatoid arthritis.

"For patients with rheumatoid arthritis (RA) who are considering methotrexate, we have developed a web-based patient decision aid called the ANSWER (Animated, Self-serve, Web-based Research Tool)"

When I first heard of decision aids I was really excited by the concept until I found out that we were talking about pamphlets. There's been a lot of progress since that day years ago and now you can find interactive fact-based online tools that are truly geared to the needs of an individual. The ANSWER paper tested a method of helping patients choose whether or not to take the usual first step in the treatment of RA: using methotrexate.

When I looked for more information (partly because I liked the poster picture) I found another paper by Dr Li that provided more background about the usability testing of this tool. That's the beauty of looking on the internet - you usually find even more than you expect.

That's why the above link is the perfect choice. This research is done by Arthritis Research Canada in BC so it's Canadian and very applicable to people I often talk to online. Of course the decision whether or not to take methotrexate is one I made long ago, but it applies directly to people with a new diagnosis of RA, and there are many of them online.

My theory is that it's harder to find answers when you don't know the questions. That's one of my reasons I like to share useful tools and answers I find on the internet.

Also when I start my searches with links to papers published in a journal that is included on PubMed it makes me feel more comfortable with the likelihood that the facts are accurate. 

And here's the link to where you can actually try this web-based decision aid yourself :

Answer Tool at ARC Canada

Crossroads picture from ARC, others my own

Guest Post From Robin Magee. Evolution of Blogging

Robin McGee and I met at the Patients Canada Conference in 2013. She was brimming with enthusiasm to meet so many other people who were obsessed by health and patient issues to almost the same extent as she is.  I say almost because there aren't many of us who have written a book. 

Robin's book comes out in May and is titled "The Cancer Olympics".  I can't wait to read it.Robin's been blogging a long time in a private space and now she's ready to come out.

Here's Robin's post: You can find her @TCOrobin

Welcome to March Break. I am sure many of you are off skiing or sunning or visiting relatives. I am spending the week in Ottawa with my elderly parents, trying to provide what help I can. My parents still live in the house I grew up in. My mother’s cancer has spread to her lungs and liver now, and inasmuch as possible they hope she can stay in their home. She is tired and often in pain. I am glad I am able to do things for her – today I took her to get her hair done.

One more revision round was required on the book, and the (hopefully) final proof went in today. More errors that I am astonished that I and my professional proofreaders never saw: “latter” instead of “later,” quotes unclosed, punctuation misplaced, a misspelling of the word “tumour.” I am getting nervous that I won’t have it in time for the launches, but the publisher reassures that it should be no problem. Where are my fingernails?

This week I discovered a fascinating research paper about those who maintain illness blogs like this one. (Ressler, P., Bradshaw, S., Gualtieri, L., Kwan Ho Chui, K. Communicating the experience of chronic pain and illness through blogging. Journal of Medical Internet Research, 2012, 14, e143. Published online Oct 23, 2012. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3510726/

Using an online survey, the authors collected information from 230 of my counterparts: people who have kept a blog throughout the course of a severe illness journey.

The authors wrote very poignantly about the role of blogs for patients: “In her book, Narrative Medicine: Honoring the Stories of Illness, Charon [16] describes the experience of patients and families as they enter the divide between the sick and the well, a separation that often feels huge and unbridgeable to those navigating a new way of being:

“These divides between the sick and the well are unspeakably wide. Leveraged open by shame, rage, loss, and fear, these chasms can be unbridgeable. And yet, to get better, the patient needs to feel included among those who are not ill. The sick person needs to continue to be, somehow, the self he or she was before illness struck.”

Chronic pain and illness may have an isolating effect on individuals, changing their perceived roles in society and challenging their ability to find meaning in life and their illness. Creating connections between the world of the sick and world of the well can be important in the positive psychosocial functioning of individuals.”

The authors concluded: “Results suggest that blogging about chronic pain and illness may decrease a sense of isolation through the establishment of online connections with others and increases a sense of purpose to help others in similar situations. Respondents reported that initiating and maintaining an illness blog resulted in increased connection with others, decreased isolation, and provided an opportunity to tell their illness story. Blogging promoted accountability (to self and others) and created opportunities for making meaning and gaining insights from the experience of illness, which nurtured a sense of purpose and furthered their understanding of their illness.”

I was interested to see that many of the bloggers became patient advocates – that this is a natural evolution for many besides me. Here are some of the qualitative responses made by my fellow bloggers:

“It started out with just my personal stories and then I started sharing research and attempted to be an advocate.”

“My blog content has changed mostly as I have a desire to spread more awareness and create a message that others will better relate to and understand.”

“I’ve come to terms with being ill, so there’s less ‘oh goodness it’s weird and scary encountering (insert fact of disabled life).’ I’ve become more political. And there’s more stuff without a disability angle.”

“I take more of a patient advocacy stance.”

“First I was helped, now I am helping...a reminder that I am part of the world.”

Recently, I have followed the blog of one of my CRC counterparts: a young mother, only 42, with a six-year-old child. Diagnosed only one month ago, she has metastatic disease in her liver and her lungs, and has just embarked on full-tilt chemotherapy. Reading her posts and the responses of her community is like stepping into the past: the terror, the bravado, the unknown.

Perhaps one day – God willing – I will see her write a post just like this one.

Blogging and Connections

When I started to blog I gradually realized that I had good practical tips learned through being a patient with chronic illness for over thirty years. That's the first reason I blog and share details of my own health on social media.

I jumped in head first

As a patient I had already discovered that the best way to find the in-depth learning I needed was to talk to communities of patients. Sjogren's World helped me to realize I had Sjogren's Syndrome long before I got a diagnosis. I joined a yahoo group of people with shingles who held my hand and supported me with information from their experiences. In another more social group, after ten years we share the good and bad as life goes on. 

On the #MedX Engage/Empower course and Twitter discussion on February 20th, 2014 I heard Gilles Frydman @gfry and Roni Zeiger @rzeiger talk about the way patients form networks of microexperts and "amplify the collective intelligence of the members."

I think that's what we're all trying to do with our blogs. Add another voice to the rivers of patient experience that are starting to grow in strength and power. The current is moving away from the patriarchal hierarchy where health care knowledge is held by a few. 

You never know who your audience is

My life with chronic disease developed in the usual way. I started with pain, depression and feeling that I was weak and unable to fully participate in a normal life. It was not possible for me to have a full life in all of the areas that were important. If I worked full time then social life, career development and even family would suffer due to lack of energy. I proceeded like this for years - my doctor said my RA was well-controlled but obviously the lack of energy affected my life so his version of "control" did not match what I expected.

Love to give directions but hoped for more energy than an inukshuk.

But there were some turning points - when I successfully advocated for treatment change and another when an offhand compliment encouraged and even energized me.

Now I have adapted to the life I have and the results have been unexpected and positive.

The second reason I blog and share on social media is that I benefit too. This statement from the research paper below really makes sense to me.  

Communicating the Experience of Chronic Pain and Illness Through Blogging  by Pamela Katz Ressler, RN, MS, HN-BC,#1 Ylisabyth S Bradshaw, DO, MS,#1,2 Lisa Gualtieri, PhD, ScM,#2 and Kenneth Kwan Ho Chui, PhD, MS/l

"Results suggest that blogging about chronic pain and illness may decrease a sense of isolation through the establishment of online connections with others and increases a sense of purpose to help others in similar situations.
Respondents reported that initiating and maintaining an illness blog resulted in increased connection with others, decreased isolation, and provided an opportunity to tell their illness story. Blogging promoted accountability (to self and others) and created opportunities for making meaning and gaining insights from the experience of illness, which nurtured a sense of purpose and furthered their understanding of their illness."

It's all about the connections. There's no other way possible to connect with such a great group of people involved with and interested in health care at every level.

Connections

This post is part of a blog carnival: "Why do you blog or share through social media about your illness?"

http://restoringqualityoflifeblog.org/2014/03/05/blog-carnival/

Here is a link to a previous post that I called Fruit vs the Blog exploring the question of which is better for your health - eating fruit or blogging? Of course there's no way to compare.

Shingles Is Like The Invisible Man

I was standing in the reception area of my office one Wednesday just heading out to go to see the doctor for a scheduled injection. Suddenly there was a very odd feeling just below my waistline on one side. It was like a vibration, or a sort of buzzing feeling.  I mentioned it to the doctor but he brushed it off as trivial and it had stopped by the time I got there. That symptom is called a prodrome.

Invisible Man

A week later there was severe pain in my back. I went out and got an ObusForme for my office chair thinking it was a back problem, but that and heat did not seem to help so I went to a walk-in clinic for help. After an examination the doctor gave me a prescription for muscle relaxants. They did nothing and I was beginning to doubt the evidence of my own body when the pain moved to the front on the same side.

I went on working though the pain was sometimes in the back, sometimes in the front but always intense. Since my regular doctor was still on vacation I went to emergency. The pain was the worst I'd ever had.  All the doctor there did was give me a prescription for painkillers which I tried once. When that didn't help I got rid of the pills since they also produced nausea.

So after three doctor visits and three weeks of pain I still had no idea what  was wrong with me.

On the weekend our errands included a trip to the local drugstore to pick up a prescription. I started talking to the pharmacist and asking her for ideas to control the pain problems I was having. She asked "Do you have a rash anywhere?" I said yes, I had a very little rash under my belt buckle but assumed it was an irritation. So she said it was likely shingles and I should hurry to the doctor first thing Monday morning. The reason for the rush is that once the rash comes out you need to start anti-viral treatment within 72 hours for the drug to work.

I managed to get an appointment and was given a prescription for Famvir. Unfortunately that made me feel worse than shingles did so I went back to the doctor and she gave me a prescription for Valtrex, another anti-viral which worked well. After a few days I started to feel better.

Shingles is a herpes virus (herpes zoster) and these same drugs are used to treat or prevent other strains of herpes. If you ever had chicken pox there is a chance that you might get shingles, particularly if you are taking immune-suppressing drugs.

Shingles affects defined areas of the body called dermatomes. You can see them in this poster that has been on my doctor's cupboard door for years. She got it from one of the manufacturers of shingles treatments.

If I were not taking immune suppressant drugs currently I would ask for the shingles vaccine. Unfortunately it is a live vaccine and my rheumatologist strongly advises me not to have it.

My advice if you had chicken pox and your immune system is not suppressed would be to ask your doctor about a shingles vaccination.

http://www.ncbi.nlm.nih.gov/pubmed/23932722

Risk of herpes/herpes zoster during anti-tumor necrosis factor therapy in patients with rheumatoid arthritis. Systematic review and meta-analysis.

http://www.ncbi.nlm.nih.gov/pubmed/24322451

Comparison of national clinical practice guidelines and recommendations on vaccination of adult patients with autoimmune rheumatic diseases.