Category: HAWMC

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?

 

Day 9: Caregiving #HAWMC

Posted on by Grayson

Today’s post centers on tips and advice to the caregivers out there. Over the past few years, I have posted several things focusing on caregivers that I felt needed reposting. Take a look!

  • A review of Partners in Healing: Simple Ways to Offer Support, Comfort, and Care to a Loved One Facing Illness by William Collinge, PhD.
  • An interview with Carla Jones, author of Death by Rheumatoid Arthritis
  • A review of After the Diagnosis: Transcending Chronic Illness by Dr Julian Seifter & his wife Betsy
  • A study showing that partners of those with RA and like diseases suffer as much emotionally as the patient themselves
  • A post from last year’s HAWMC focusing on my support system
  • Two posts on sex and chronic illnesses:
  • An interview with my fiance about the difficulties of being in a sometimes caregiver role, and tips/advice for others doing the same
I hope that this lovely collection of links can help to add to the knowledge that you, as a caregiver, are not alone – and that relationships can survive and even thrive through these chronic illnesses. It took living my own life to realize that, as bad of a third wheel as Arthur can be, he can’t ever severe the relationship I have with my fiance. I refuse to be another one in a long line of statistics proving that love loses in the chronic illness game. But that takes understanding the difficulties that come along with A) dating me and B) dating Arthur – realizing that it is just as hard for my fiance to live with Arthur as it is for me, and maybe even emotionally more difficult because he knows there is nothing he can do to fix this for me.
Just as a final remark to all my fellow spoonies – please remember that you’re not angry with your significant other, but with your illness. It makes a huge difference when you stop taking out your anger on the people who are there to support you.

Day 8: Arthur the Animal #HAWMC

Posted on by Grayson

Today’s prompt is a little tricky for me. I’ve been asked to write about what animal my disease would be if it was one. The thing is, though, that I love animals and I can find reasons for their actions so to compare any animal to Arthur is just insane.

If Arthur was any kind of animal, he would clearly be a human. He responds to the same situation differently always. When he doesn’t agree with what you’re doing, he will let you know immediately. He attacks no matter the situation, no matter how I feel or how much I try to be normal or healthier. He discriminates against me with the fire of the Westboro Baptist Church and doesn’t care to hear any rationale or to be reasoned with.

There is no animal so ruthless in nature that attacks without any provocation like Arthur, and no animal deserves to be compared to this being that can so willingly destroy and take lives. Animals are so much kinder in their killings than Arthur and the rest of humanity.

Day 7: Sensationalization of Illness #HAWMC

Posted on by Grayson

To be honest, there have been too many sensational cures going around in our lovely media lately that I don’t want to add to it or promote it. I will say that Dr Oz is one HUGE part of what I’m talking about, showing sensationalized “cures” for JIA without showing the medications individuals were on, or how it could be far more likely that an individual was misdiagnosed and that the treatment for one thing “cured” them of the incorrect illness.

I’m tired of being told to eat rum-soaked raisins. I’m tired of people telling me to avoid 8 different food groups. I’m tired of having all of these idiots think ‘arthritis’ is all aches and pains, and not see the chemotherapy, stem cell treatment, failed meds, and friends we lose because as a society we fail to see the value in researching new treatments and cures for autoimmune diseases.

Laura died because doctors – at a hospital she frequented – didn’t know how to handle someone with an autoimmune disease and practically non-existent immune system due to the treatments. Forgive me if I don’t want to lend credence to the idiots who don’t understand that these diseases are deadly.