Category: health activist writer’s month challenge

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.

Day 22: This is Why I Fight #HAWMC

Posted on by Grayson

“Write about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism.”

First, allow me to give you some reading music:

I would be lying if I didn’t say that there were a million reasons I fight for awareness and better treatments for rheumatic diseases. To me, every single motivating factor is simple and overlooked but perhaps not quite that ordinary.

Before I starting blogging, I thought I was nearly alone in my suffering. I didn’t know the stats but I knew no one outside of my family that had any kind of juvenile arthritis. It wasn’t until high school that I met someone else (also named Kirsten!) who had it growing up and her disease was in remission. In college, I didn’t know anyone with any rheumatic disease save a coworker at a department store. Many of you know I began blogging because I couldn’t discuss my issues with my now-fiance due to anxiety and rejection issues. But then I started hearing from others with this and other rheumatic diseases. Now I know so many families affected with Still’s and other autoimmune arthritis types, be it an adult in the family or a child.

So what motivates me?

  • The face I get when I talk about having an arthritic disease if I’m not able to use a large description to really explain what happens
  • Waking up to see this sign every single morning
  • Idiot articles and show bits in the mainstream media, like Dr. Oz and that recent ‘cured’ child
  • Kids and other adults living with this and other rheumatic diseases, no matter their severity or disease status
  • People that have lost the battle with this and other rheumatic diseases
  • Laura’s dedication and mission was conatgious more than she ever knew
  • My fiance’s dedication, encouragement, and support
  • Watching my sister battle this disease with incredible strength
  • My baby niece – chances are she won’t end up with this or another form of JA, but in case I will fight to get as close to a cure as we can before she even gets sick
Me and Mia
Brooke
Laura, I miss you so
Me and the fiance
My sister and my niece Missy

I love you all. I may not even know you, but you’ve clearly come here because you or someone you know is fighting this or another rheumatic disease. It is a tough road to go down, but trust me things will get better. And if they’re bad right now, scroll back up and look at my baby niece!

Day 21: Adversity #HAWMC

Posted on by Grayson

“The flower that blooms in adversity is the rarest and most beautiful of all.” -Mulan

I’m not sure what to make of this quote to be honest. Part of me agrees and part of me doesn’t.

People have told me that they are amazed at what I have done and continue to do in the face of adversity. I grew up sick, dealt with sexual abuse and assaults, felt helpless watching my sister being beaten by family, and continue to deal with depression and chronic pain issues. Despite all that, I have achieved a lot. I finished high school with honors and an International Baccalaureate diploma, in addition to being one of the valedictorians. I was the first woman in my immediate family line to go to and graduate from college. I started college with sophomore standing due to my IB and AP credits. I continue to work and to live my life as normal as possible, even though it hasn’t turned out really at all like I’ve planned.

I try to carry on being a realistic optimist. I know it sounds like an oxymoron and, to be honest, often feels like one. However, it is who I am.

I don’t think that makes me that rare or beautiful like this flower. I wouldn’t be the same without each thing I’ve gone through but that doesn’t necessarily make me better for it. Every person deals with a set of crap circumstances. These are the things of which life is made. My set of circumstances just happen to surround a very dysfunctional family, assholes interjecting their ways into my life, and Arthur the biggest asshole of all. But things could be worse. I could be my fiance’s aunt, fighting breast cancer a second time and not particularly winning the battle. I could have lost my legs in the Boston bombings. My sister could have died when she had a seizure a few years ago. My mom could have died in the hospital in October.

That doesn’t mean that there aren’t people who clearly have it better than me either, but we all have our crosses to bear. Laura taught me that my hurt could not ever equal the hurt someone else feels. We all handle things differently and we have to help each other through that. As much as she didn’t compare pains and experiences, I know that the things I’ve gone through with my illness will never even come close to what she had gone through. Even as she was becoming more and more ill, starting to die of infection, she tried to help me figure out what was going on with my back (clearly she didn’t know what was happening to her). She did not try to make others feel horrible because she was clearly worse off than them, but to encourage friendship, support, and community. Knowing her made my life infinitely better.

Laura is this rare and beautiful flower, now wilted never to bloom again. The rest of us are simply trying to catch up.

Day 20: Not the pit of despair! #HAWMC

Posted on by Grayson

“What gets you OUT of the pit of despair when nothing is going your way?”

First off, this prompt is awesome. Why?

My uncle and I used to be like brother and sister. Like any good big brother, he and I would play fight/wrestle. The pit of despair was the nickname for his horrid smelly armpits.

Thanks to Lori from Misdiagnosed Me for bringing this memory back with her prompt suggestion.

I’ve talked a lot about humor’s role in combating my disease in the past, and I guarantee you that still stands. Here is a list of things that I do to get my grove back when Arthur is trying to keep me down:

  • Go to the gym to run my tiny quarter mile or more then laugh in the face of autoimmune arthritis
  • Play video games despite angry swollen fingers
  • Cook amazing food
  • Bounce around with my baby niece and hang out with my family
  • Dance around to Justin Timberlake’s latest album
  • Play blues on my ukulele a la Hugh Laurie
  • Watch bad-ass comedy shows like Monty Python, A Bit of Fry and Laurie, and Whose Line Is It Anyway?
  • Yoga/meditation
  • Arthritis walks/awareness shizzle
  • Go to the zoo
  • Thursday night trivia at Applebees with awesome friends
  • Brewers baseball, whether it’s listening to Ueck on the radio or popping in on the press box when my future father-in-law is covering games
  • Wedding planning!
  • Pinterest (see humor, geek, and wedding genres)
  • Talking/spending time with my favorite people
  • Snuggling with the fiance!
What about you? What kinds of things do you do to escape your illness?

Day 19: Vintage #HAWMC

Posted on by Grayson
September 26th, 1993

This is the last picture taken of me before I got sick. Between this date and November 14th, something went horribly wrong in my body. I had just started kindergarten, though this was a Sunday so I was out cold on the couch. Look at all those normal little joints and rash-free skin. This was before all the misdiagnoses, the weekly labs, and the wheelchair by age 8 prognosis.

I think of all the things ahead for that little kid and I can’t help but get emotional. I didn’t choose to be sick. I certainly didn’t choose my illness. I try to not be bitter, but looking at this kid as not me but my niece or another child, she deserved more.

Live it up for the next month and a half little one. I’ll meet you on the flip side.

Day 15: Sharing is caring! #HAWMC

Posted on by Grayson

Today I’m supposed to comment on another HAWMC participant’s post, but I thought I would use the extra prompt from yesterday and instead share some of my favorite posts by other bloggers!

  • RAW4RA shares one of her favorite pictures of herself and it’s from her sister’s wedding. It’s always wonderful to see when our illnesses take a chill pill right when we need it so we can enjoy special days.
  • 710.9 talks about what superhero UCTD would be
  • 710.9’s partner talks caregiving
  • Chronic Curve writes a letter to her health conditions and shows, despite all she’s been through, that she is stronger than her body
  • Chronic Curve also goes into the ridiculous things people think will ‘cure’ us. I was just floored reading some of them and I’ve heard a lot of crazy things!
  • The Cryptic Cripple shares her appreciation for her honey in a post thanking our care givers for all they do for us – hear hear!
  • Carmen, Jane’s significant other, guest posts on Blackbird At Night about Caregiving 101 geared towards parents
  • Jamee’s husband John guest posts on A New Kind of Normal about caregiving, and emphasizes taking care of yourself
Happy reading!

Day 12: Dear lil me #HAWMC

Posted on by Grayson

“If you could go back and talk to yourself (or your loved one) on the day of your diagnosis, what would you say?”

What could you say to a 5 year old, sick for a year, who finally gets an acknowledgement from doctors that X is really wrong with her instead of Y? What can you say that makes nearly a year of diet changes, little sleep, weekly lab draws, crying family, and a previous misdiagnosis of 6 weeks to live – what do you say that makes that all okay? Or the next 19 and a half years she gets to spend in near constant pain, being picked on due to her weight or the ease with which she injures herself – what makes that okay? Or the half dozen new issues she’ll have pop up… Or watching her sister go through this too… I could go on and on.

Of course the prompt asks what you would tell yourself, not would you tell yourself everything will be okay. Who wouldn’t try to do that though? I mean, check out my cuteness.

I’d tell her that the thought docs had that you’d be in a wheelchair within two years is bullshit and to not let that hang over your head your entire life. I’d tell her to stand up for herself and speak out about abuse for her and her sister. I’d tell her to be kinder to her sister, and meaner to the grandma who beat her sister. I’d tell her to not avoid that last 1 in 911 when calling about that bitch. I’d tell her that she shouldn’t reach out to people who clearly avoid being in her life for a reason – none of them are good reasons, but let it be instead of forcing it. I’d tell her to fight against those who were supposed to be close to her, trusted, and yet ruined that trust with acts unmentionable. I’d tell her she’s better than allowing that to happen.

I’d say that 2 liters of soda every few days aren’t okay, and neither is eating out every night. I’d tell her to exercise but only half an hour a day to feel better and be fit, and not to overdo it and go anorexic with overexercise. I’d tell her to take care of herself more, not to be thin but to be healthy.

Mostly, I’d tell her she’s worth everything in the world and that things will be okay.

But anything I say to little me, no matter how much pain and grief it would save, would alter who I am right now. It could change anything from my hair color to where I live to my fiance. And those aren’t things I’m willing to change – though I do need to recolor my hair again soon as the greys are popping up through the red.

That just means I have to help raise my niece so that she knows everything my sister and I didn’t growing up. And that’s something that I’ll always look back on as a good decision.

Aw, for me?