Saturday, March 29, 2014

TOW #23 What I Never Knew I Needed to Fight RSD


Katie Searfoss, a 22 year-old college student, writes a blog, Chicken Soup for the RSD Fighter’s Soul, to support people who suffer from RSD, like she does. Her blog is followed by many people with RSD, but also their friends and family along with some of her own. Often her message is about finding the positives in the pain, however, in her post “What I Never Knew I Needed to Fight RSD,” Searfoss addresses her varied audience and questions her readers in order for her post about difficult personal experiences to have he greatest impact.
            This post pinpoints specific parts of Searfoss’s journey, so she begins by explaining her intended audience, which allows for the message to be received by the right people. She communicates that “this won’t be universal, ” to help readers deduce that the meaning will only truly be understood by people with RSD. She additionally includes a message to “my non-RSD friends” leaving them with a message of hope before she addresses her real purpose. By establishing this information in the first few paragraphs of the essay, Searfoss not only filters out those who would not understand, but also shows the fighters the importance of this post.
            Following the introduction Searfoss details her real message to the readers about what a fighter really needs in this situation, using questions. Throughout the post she constantly relates her own feeling to the reader with inquiry. In some questions she makes emotionally provoking statements about frustrating experiences, with others who do not understand, she knows we have all shared: “’Sunny day-pain free day?’ WHAT?” and other questions are more serious: “ We all need the armor to wear when we fight that battle too-not just the weapons. What is included in your armor?” By using this method, Searfoss makes her audience process the ideas. First she established a connection through shared experiences. Then she gives fighters tools to help on the pain journey and allows them a serious outlet to think about their purpose.
            The impactful message in Searfoss’s blog post succeeds in reaching her specific audience by using questions. Her effective post provides a support for those who suffer with RSD and help them feel connected to other fighters even just through touching words in a blog post.

Photo: What I never knew I needed to fight RSD:

That rainy night in November, many years ago, when I laid in that cold hospital room listening to the doctor who gave me a long-awaited diagnosis....he neglected to give me the directions. 

Aren't long roads supposed to come with directions? Aren't hard to piece together projects supposed to have instructions? What about when you fight a ridiculous monster that calls the shots on how much pain you're going to feel that day? I don't just want a packet about WHAT it is, though that is helpful....I want a packet on HOW to do this. They neglected to give me one. Or I forgot it in that cold room.

A year ago I wrote a post on what I wish someone would have told me before going into the hospital. Today I write about what I wish I would have known I needed. But here's the thing, this won't be universal. And that's why they don't tell us what we need-because it'll be different for everyone. But I hope this post challenges you to ask yourself what do YOU need to fight RSD? And I'm not talking about a treatment plan or medication.

So for my RSD readers-here are my 10 things I never knew I'd need to fight this beast. May this spur you on to ask yourself what YOU need. And for my non-RSD friends on this page, thank you for knowing me well enough to understand these things about me (or being willing to read something new).....

10. A sign of hope. For me-daisies and when the birds sing first thing in the morning. It'll make me smile every time. 

9. A reason to fight. Somedays I do NOT want to get out of bed. Somedays I do NOT want to even try to do the day. Somedays I need a reason better than "because I should." For  me, often times, that reason to fight is YOU.

8. A way to have people help without trying to say something. Song lyrics and verses go a long way. And sometimes-the people who try to find words that end up spitting out stuff like, "You'll be okay" need a suggestion of how to encourage differently.

7. For people to ask questions versus assuming. "Sunny day-pain free day?" WHAT? Who says things like this? Haha. I'm telling ya-stop assuming people. Unless I'm curled up in a ball and you ask if I need help-then just assume. 

6. A silent sign of "I'm with you." For me-coffee and a wink. If you don't know what to say. Don't. Bringing me coffee or holding my hand often means more to me anyway. 

5. Therapy. Lots of therapy :)

4. People who know when to put my hair up. So, sometimes I get these pain spikes where I'm doubled over and struggle to breathe through it. It's just very bad pain. It doesn't last long, but when that happens, one of the best things to do for me is put my hair up because it's likely in my face and annoys the crap out of me because it's light touch on my skin that's on fire. On the flip side-if you're not a person in my life who knows me well enough to be beside me through this-please walk away and find someone who is. Crowds make me wildly uncomfortable. 

3. Laughter. I laugh most when I'm in pain the most. And people who can manage to make me laugh during this times. ANGELS. All of them. Laughter is the best. 

2. To be held when it hurts to be held the most. As unnatural as it sounds, there are certain people in my life like my Mom, my friend Molly, or my Mosa who when the hug me and just hold me for a minute-makes me feel safe in the midst of agony. Sometimes, friends, it's worth the added pain. Truly. I went YEARS without people touching me-at all. Total body pain=totally off limits. But I felt so isolated and alone. Sometimes it's better to embrace it. (And it's good desense...)

1. Safety. Oh my word...if Facebook would let me italicize, bold, and underline this word, I would. SAFETY. A safe doctor-someone who KNOWS what they're doing and knows when I've had too much. A safe friend or two who can handle me sharing about things I've seen in the hospital. A safe mentor who can hear my most secretive thoughts about pain, hospitals, treatment, and life without judging. A safe place to scream or curse or cry when my body's freaking out. A safe hospital to be treated in. Safety. I never knew I could have unsafe experiences and people-but after having them-I know now that one of the things I never knew I'd need was safety.

There's more, but these are the top ten I DIDNT know I'd need. 

What do you need? What do you need to fight RSD everyday?

We all need more than just some medication, IV infusions, physical therapy, and such. We all need the armor to wear when we fight that battle too-not just the weapons. What is included in your armor?

There is so much that is out of our control when we have a pain disorder that calls the shots. We may not have control of how our body feels-but that should not mean that it gets to call the shots on how we live our life. Find a reason to get up everyday. Find a symbol of hope for you. Find people who want to walk with you-and SHOW them how. Find a song that feels like your anthem. Find God in the darkest part of the valley you're walking in. He's with you.

Just never ever stop fighting, okay? Don't let that monster win. Let it see you smile and laugh. It hates that. Show it who's in control now. 

Fighting Together,
Katie 

Real People. Real Pain. Real God who hears our prayers.


Goal: Add context to the essay about the post 

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