Although the MS community is extraordinarily cognizant of issues related to multiple sclerosis, its symptoms, and its treatment, I imagine that the percentage of patients who read daily news alerts and peer-reviewed journal articles is rather small. But it does seem to be commonplace in the online MS community.
What is also common in the online MS community is a sharing of personal experience. knowledge and concerns. With the many blogs, forums, websites, and even Facebook, patients have access to many snippets of information which can be overwhelming. Impossible to keep up with it all. I know because I have tried.
Last week I was reading posts in the National MS Society’s new community called MS Connection. Some individuals were expressing their exasperation at reading "debbie downer" blogs and participating in forums with an overall negative tone. Too bad that the so-called "downer" blogs were turning these individuals off of MS blogs entirely. However, as the founder/leader/publisher of the Carnival of MS Bloggers, I can understand.
How many of the over 600 MS blogs residing on the internet have a greater number of posts discussing the negative sides of MS rather than positive posts full of inspiration, success or absence of concerns related to disease? I suspect that it is actually a fairly even split but perhaps the positive posts get lost in the noise of the negative.
I know that when I share personal concerns related to MS, I get more feedback than when I post positive things about life. Maybe it’s that we all want to help each other when one of our community members is hurting, scared or looking for information.
Last month I wrote about increased anxiety which was interfering with my daily life. I even researched issues surrounding anxiety and arthritis to share with the RA community since the topic was on my mind. In a way, I used news and published studies to reframe my own experience.
On a personal note, I visited with my MS nurse practitioner and together we decided to adjust my medications. I’d like to report that I’ve experienced a huge improvement in symptoms and things are mostly back to normal, just in time to spend seven days traveling next week. Also, today is Day #1 of ten days during which I will not be teaching any music lessons. This is finally my "spring break." Yahoo
I’m not sure why I was reluctant to share the good news that life has leveled out for now. My MS is stable and hasn’t been an issue since my last relapse in November 2011. My RA has survived the abuse and aggravation of rehearsing and performing with at least 20 young performers since mid-April, not to mention working with my own piano students in preparation for the spring recital which occurred this past Sunday.
Treatment with the powerful drug Rituxan is working for me (for both diseases). Although it can be dangerous and I am prone to experiencing infusion reactions, it is worth it to me to be able to experience okay-ness in life. I am able to do the things I want to do as long as I plan accordingly. I show no outward signs of disability (until the legs begin their wonkiness, though it doesn’t happen as quickly as it used to).
Recently, an MSer posted a question within a Facebook community regarding her positive JCV antibody status and Tysabri. She received many responses, some sympathetic and supportive, some negative against the medication based on personal experience (of a husband developing PML) and some offering information which affected their own choice of using Tysabri or not. I did share the current statistics regarding the risk of PML in JCV antibody positive individuals who use Tysabri for less than two years and the number of Tysabri patients who have developed PML as of April 2012.
My information came from following the news and keeping up with published abstracts and papers. My friend’s information came from personal experience. She shared, "All I know is before TY I couldn’t walk far, had a ton of pain, couldn’t feel the left side of my body and now I am doing great after my 15th infusion. It’s a personal choice just be sure to weigh all your options. Good luck!"
With all of the information on the internet available to the MS community, I do believe that all views and experiences should be represented, positive and negative. News is important as are personal opinions (especially when based on facts). And if you are reluctant to tell the good stories because you feel guilty for doing well, don’t be.
It is okay to be okay!!
So, I’ve not posted a Gratitude Friday post in a very long time. I am grateful for doing well and having wonderful friends on the internet who I know are there for me as I am there for them. I’m smiling today.
What are you grateful for today?
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.