Category: HAWMC

Love and Support #HAWMC

Posted on by Grayson
Today’s Health Activist Writing Month Challenge prompt: What has been the highlight of your health activist journey? We want to hear all about it, perhaps a conference, a podcast or meeting a fellow HA. What made this experience so special?
I feel so blessed. There are, truly, too many highlights to count. Every single day I am lucky enough to be reminded of why I do this work and why I fight hard.
In April this year, I was able to attend HealtheVoices and meet some of my favorite people in the whole world in person. We got to connect and spend time together, learning and teaching each other so much.
Throughout this year, I have been lucky enough to be able to attend several conferences and, whether it is a part of the conference or not, I’ve been able to meet some amazing people across our nation (and in Toronto!). Some of these people are my closest friends and getting to meet them in person means all the world to me.
Going to these conferences and meeting each other gives us a support system. Believe it or not, fighting for others or ourselves or whoever is hard. The work health activists do is not easy work. It is emotionally and sometimes physically demanding. Having a network of people who get it – especially on an intersectional level (LGBT+ subset, etc) – really helps. We help each other, whether that’s due to increased disease activity or emotional burnout or politics or even just needing a friendly ear to listen.
Knowing that we can help each other in the work we do and how much we appreciate each other means a lot. That’s really the highlight for me, especially for not really having a family (as far as parents, etc, go). This semi-orphan appreciates all the love and support I can get.

 

Dealing with Tough Days #HAWMC

Posted on by Grayson
Today’s Health Activist Writing Month Challenge prompt: Everyone has tough days, but how do you pull yourself out of the rut? Maybe you blog, repeat affirmations or listen to a favorite playlist. Write about what tools, tips or practices you use to lift your spirits after a rough patch.
I do whatever I can to grab inspiration or laugh.
I listen to Hamilton. I remind myself why I fight for things, because “where I come from, some get half as many” years as I have so far.
Sometimes, though, that doesn’t work or, oddly enough, makes how I’m feeling worse… like right after the election. I don’t think it’s any secret that I’m very anti-Trump. The man is not someone that is a safe person for those of us with disabilities as well as many many others.
I try not to get into politics here, but this isn’t politics as usual.
Still…
Sometimes I just need something that makes me laugh. I watch a lot of adult-themed cartoons like South Park and Bob’s Burgers. Other times, I need something where I just get invested like Cake Wars or other baking/cooking competitions.
Other times, I really really like to get my scare on. American Horror Story or horror films are where it’s at for me. I really enjoy exorcism or asylum-related things or episodes of shows involving ghost hunting.
The guinea pigs sure help, too.
What do you do during a rough day?

 

Dear Current Rheumatologist #HAWMC

Posted on by Grayson
Time to get real.Write a letter to the best or worst healthcare professional you’ve seen. Don’t hold back.
Dear current rheumatologist,
THANK YOU.
Thank you for listening to me, no matter how my anxiety influences what I say.
Thank you for always keeping in touch not only with my primary care doctor but also with my dentist as we work to fix my nasty mouth.
Thank you for treating me like an equal, for always being excited to hear about the conferences I’ve gone to and the information I can share, but then also stressing the importance of self-care as I work too hard on these things a lot.
Thank you for sending me to get trigger point injections, for being willing to try whatever we can to work on my fibromyalgia. I cry every time I get to my car post-injection because it shouldn’t have taken so long to get my fibro diagnosis or to be referred for these injections – because you care enough to try whatever might help.
Two years ago I called your office to ask if there was familiarity with SJIA/Still’s there. I was expecting a nurse to call me back about the potentials of taking me on as a patient. Instead, you called me. You talked to me for over half an hour about what treatments I was on and why certain treatments hadn’t been looked at yet, and you told me what your plan would be for me. After we got off the phone, I filled out the form to change insurances so that I could come see you.
You sent me through some of the most intense physical therapy I’ve ever been in and it has helped me immensely. You banned me from yoga which I was mad about at first, but then you explained why, explained how much weaker my body was than I had noticed. With that PT, I built up to yoga again and learned how to recognize the signs of when I was pushing it too far.
You’re always open to my ideas and my data, something that not all health care peeps are into.
I am so incredibly lucky to have you as my rheumatologist and as someone working hard, not only for me but for so many others as well.

 

Share The Love: Great Resources #HAWMC

Posted on by Grayson
 
Friday follow! Create a must follow list for your community:
• Top 10 Tweeters
• Top 10 blogs
• Top 10 Facebook pages
If you’re interested in great writing about illness and disability, these are definitely some people you’ve got to follow – even if you’ve missed them. Some of these aren’t even about illness but are just awesomesauce.
Twitter:

 

Facebook:

 

Blogs:
Also don’t forget to check out Chronic Sex!

 

 

Advocacy #HAWMC

Posted on by Grayson
Was starting your advocacy journey a hard decision? Were you anxious and hesitant or were you excited and ready to share your story? Tell us how you chose to start advocating for your condition(s).
Honestly, I fell into it.
That phrase explains a lot about my life, too, but it’s true!
As a younger person, I did a TON of advocacy work around women’s right, feminism, sexual health, education, and human rights. It took a long time for me to transition to using those powers for my own health stuff.
I started writing for me and to show T what kinds of things we were dealing with potentially as we began dating. I needed to learn more about my body and have an outlet that was all my own, too. It was because of how rare Still’s Disease is that I encountered other patients. They found me for the most part.
Going into advocacy was really a by-product of raising awareness of what I was dealing with and how dangerous chronic illnesses are or can be. I met people who had no idea that diseases like lupus can be fatal or that pain can cause changes in our brains. I also met people who were incredibly into alternative stuff to the point that they were harming themselves without taking on any treatments.
I began to try to educate more so that we weren’t being taken by snake oil salespeople.
Most of the advocacy work I did in the beginning was online. Most of my stuff is still online, but now I’m able to travel and do so much more in-person work, too. It’s amazing to meet others in person and to talk to them, whether I’ve just met them or have known them for years.
 
Do you do advocacy work? How did you get into it?

 

My Process #HAWMC

Posted on by Grayson
Every great writer has their own process! What’s the blogging process look like for you? Do you set
aside time each week to write or do you wait until the inspiration hits? Do you finish a post in one
night or use the week to perfect it? Do you edit your blogs or just hit publish? Whatever it is you
do, it’s unique to you and we want to learn about it.
Usually, when I write, it is because I have instant (or recent) inspiration. I do have some posts that I prepare sometimes months ahead of time because it is a topic I want to cover but then don’t get to for a while.
Those tend to be those informative posts like “Hey, you should know these insurance terms!”
I try to finish my blog posts in one sitting most of the time, save the above. When I write product reviews, for example, I may take notes in my posts before publishing about what I need to remember to mention – whether that’s my own idea or something I’ve been asked to go over. Still, I almost always do the actual writing portion all at one time.
I’ll edit for grammar and the like, but, usually, do this as I go doing a final once-over at the end.
When I have graphics for my blog, I try to do those either when I come up with the topic idea OR when I’ve come up with a title.
After I initially had come up with those theme days like ‘Meditation Monday,’ I tried to blog several times a week. Now, however, that isn’t always a possibility. And that’s okay!
Do you blog? What’s your process like?

 

Day 29: Congratulations #HAWMC

Posted on by Grayson

Today I have to share three things I love about myself, things I’m great at, or just want to share.

Damnit! This is hard!

1. I like my eyes. They’re gorgeous and would be on anybody. I like that I don’t often have to use mascara because I have great lashes. It clumps up too much to be comfortable and aggravates my eyes anyhow. I love that I can just slap on some brown eyeliner and go and look pretty, even if it isn’t as gorgeous as my full on retro makeup look.

Um…

2. I love that I can tell I’ve lost weight. Technically it is only a few pounds, but I know I’m building muscle at the same time. I’ve lost space. I catch myself in the mirror and think that I look sexy and attractive for the first time in a long time. My style sense is getting better too. I’m sure part of it is actually buying clothes that fit me better now instead of always resorting to XL baggy tees. I’m moving down to the L range and I intend to stay here for a while.

And…

3. I’m not too shabby at being there for people. I might not always physically be there but I’m more often than not a text/tweet/phone call/email away. It may take a bit for me to notice you need me, but then I’m all like BAM! Tell me your problems!

And just to add another one, I’m not bad at taking pictures. We have a bunch of them up on our wall that either the fiance or I have taken. I love taking pictures and editing them to get cool effects. Want to see? Of course you do!

The fiance took this in 2010, Oregon coast

 

Summer of 2009 taken by a friend, me & my sister

 

A random grave in Western WI or IA

 

The confederate graves, Forest Home Cemetery, Madison WI

 

Abbott’s grave, Forest Home Cemetery, Madison WI

 

Day 27: A book a book! #HAWMC

Posted on by Grayson

I don’t think it is any surprise that my book would share the title of my blog.

Oh, is this the first you’ve heard about the book?

I am going to be working on a book that is a collection of stories of kids and adults living with this disease in Laura’s memory. We have to find ways to raise awareness and help those dealing with this disease, so what could we do better than to collect these stories to help others?

Are you interested in learning more or being a part of this project? Feel free to email me at kirsten -at- notstandingstillsdisease -dot- com.

Day 26: Pain-free pass #HAWMC

Posted on by Grayson

There are many days where I fret over the consequences of any actions I may take. The pain from Arthur and the house guests he’s brought along has caused me to miss family things and special events not to mention the pains and emotional effects of being in pain so much. Out of every single day in my life, there is one that I need to be pain free.

I’m getting married August 16th, 2014. It is my great grandmother’s birthday, though she died due to MS over a decade ago. She was strong and feisty, and I wish she would have been around as I grew older. But I digress.

I’ve already put 6 months of planning into this day, with 16 months to go. We have a venue, a dress, and the cakes chosen with deposits paid. We have so much to do, but we know I have a lot of time to do it in. The day before we will have to decorate and get things set up and ready to go. I don’t even have any idea how I’ll sleep the night before.

I just want to be painless, just for this one singular day. I want to be able to enjoy my day and my wedding without having to entertain Arthur like the drunk uncle no one wants to invite but does because he’s family. I want to run around and visit with everyone, instead of sitting and having them all come to me. I want to dance like there is no tomorrow and stuff my face with cake without worrying about how I’ll be able to walk the next day.

I just want, for the most special and important day in my life, to be normal. Just that one day is all I ask.

Day 25: Enjoy some knowledge #HAWMC

Posted on by Grayson

Today’s post is short and sweet, about something I learned from another health activist. It comes from Laura – who else?

“Life with Still’s can still be life.”

It is so simple but I catch myself forgetting it often. We can get so wrapped up in our hurts and our trauma/depression/anxiety and all the other issues that come along with a syndrome like this that we forget we are living life right now and that there is no pause button while we get better.

No matter your health issues, you are still alive. As much as life can suck sometimes, it truly is beautiful and we should all embrace it.