Monday, April 29, 2013

Day 29: Congratulations #HAWMC

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.


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.


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

Saturday, April 27, 2013

Day 27: A book a book! #HAWMC

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.

Friday, April 26, 2013

Day 26: Pain-free pass #HAWMC

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.

Thursday, April 25, 2013

Day 25: Enjoy some knowledge #HAWMC

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.

Wednesday, April 24, 2013

Day 24: Wordless Wednesday #HAWMC

Create a Pinterest board for your health focus. Pin 3 things. Share the image.

Come check out the board here.

Tuesday, April 23, 2013

Day 23: Home Lab Meters #HAWMC

Dear blood glucose test meter creators, I have a new project for you!

I hate when I have so long in between rheumy appts and I'm pretty sure I'm flaring but it takes so long to get appts sometimes. There are other times where I don't think it is bad enough to involve docs, but I'd love the ability to track my flares so when I do have appts I can say 'I had x flares' and it could help determine when meds need to be changed or altered.

In order to measure inflammation and other markers, we'd really need something akin to a blood sugar testing meter able to take blood and interpret the results. It would be perfect if the device could measure ESR (elevated sed rate), CRP (c-reactive protein), a CBC (complete blood count), albumin (plasma protein/liver function), creatinine (muscle metabolism/measure of kidney function), and ALT/SGPT (liver enzymes).

It would be great if the results could be sent to your doctor (or if your hospital participates in an online health management program then there). This could allow us to save money on labs (uh oh!) and to monitor our health more closely ourselves and really be a partner in our health management instead of simply just a patient.

Monday, April 22, 2013

Day 22: This is Why I Fight #HAWMC

"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


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!

Sunday, April 21, 2013

Day 21: Adversity #HAWMC

"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.

Saturday, April 20, 2013

Day 20: Not the pit of despair! #HAWMC

"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.

Also, you may remember the pit from the best movie ever:

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?

Friday, April 19, 2013

Day 19: Vintage #HAWMC

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 girl 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 girl 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.

Thursday, April 18, 2013

Day 18: I take it back... #HAWMC

Today's prompt is to write about a time that either you lashed out at someone because of issues related to your health condition or a time someone else lashed out at you for the same reasons.

This was kind of a tough post for me to write to be honest. I have some anger issues due to both Arthur and a lot of miscellaneous other things in my past. Also among other things I'm part Irish and part Italian so I'm sure that doesn't help. My anger issues are usually directed inward, not outward though. When I try to think of specific cases, I just think of times that I get sad, like when I was mostly couch bound for a day and started worrying about how in the world I was going to have a wedding when this keeps happening. It's really hard to avoid the depression aspect of this disease, something I've been fighting from a very young age. I don't think the majority of young kids think of suicide, but I've had those thoughts since I was about 8 or 9.

The people in my life try to be understanding but I know that there are a lot of them who, at times, don't understand and get frustrated with me having to cancel plans. It doesn't help that I don't like to outwardly admit how sick I am, something it seems we all have an issue with.

I did have to cancel going to a pretty big step in someone's life and everyone was not very pleased with me as I bailed at the very last minute when I had already gotten there and just realized there was no way. My fibro & Still's were both acting up, so it hurt to be wearing clothes and sitting and whether I moved or stayed still. Leaving the event, I cried the whole time between being in pain and not being able to be there. My thoughts were to just push through it, but there was just no way. The physical pain was absolutely terrible, but the emotional pain from having to leave was even worse.

In talking to a third party, it came out that people thought I was having a panic attack or just did not want to attend. There seem to always be people, no matter how close to you, that don't believe your pain is real at times. It was very upsetting for me. I have moved past it and not brought it up to the people involved, because I'm not vindictive enough to do that. Instead, I've forgiven the people involved because it is hard to communicate your pain while you are experiencing it especially when you're hitting 9 and 10 on the pain-o-meter.

I've tried to be more communicative as of late when I have to cancel plans which helps. And the people involve understand fibro better now and so when I have to cancel things they're more understanding and I explain more what's up. I do have a few people in my life who know that when I say I'm not feeling good it means Arthur is being a dick. It really is wonderful to have people like them in my life - even though I know they don't understand what I'm going through they just know that it is really bad when I have to cancel plans with them. I really don't know where I would be without those kinds of people in my life.

Wednesday, April 17, 2013

Day 17: Wordless Wednesday #HAWMC

Wordle: Untitled

[The answer to yesterday's prompt was of course number 2. Still's in children was discovered in the 1890s by Sir George Still, but not seen in adults really until the 1970s.]

Tuesday, April 16, 2013

Day 16: Spot the looney! #HAWMC

Today's prompt is to share three things that are true about me, my condition, or my activism in addition to telling one lie. Your mission, should you choose to accept it, is to figure out what is the lie. The answer will be revealed in tomorrow's post.

  1. Still's disease can affect everything in your body from eyes to skin to even teeth
  2. Still's disease in adults was discovered in the late 1800s, but in children the disease wasn't discovered until the 1970s
  3. Kids with Still's disease, or systemic JIA, make up 10% of the children living with juvenile idiopathic arthritis
  4. The appendix and tonsils are both a part of the lymph system, through which Still's travels

Monday, April 15, 2013

Day 15: Sharing is caring! #HAWMC

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!

Sunday, April 14, 2013

Review: Model Patient: My Life as an Incurable Wise-Ass by Karen Duffy

I decided to take a break from the HAWMC prompts today to share a book that I love.

Even if you don't recognize Karen Duffy by name, you probably will recognize her face.

FYI she's the one on the right

If that doesn't do it, she's the girl in Dumb and Dumber chasing Harry and Lloyd and the girl in Blank Check that the kid hires. She was a VJ for MTV for a while and did a lot of ads with Revlon as well.

The day after the above picture was taken, Karen landed in the hospital. She had a horrible pain in her neck and it surely wasn't Clooney related. It took a very long time to narrow down the possible maladies Karen was facing, but she was eventually diagnosed with sarcoidosis, a disease where inflammation causes lumps called granulomas to form in your body. This disease, like many other autoimmunes, can be managed well. The only problem is that Karen's is in her central nervous system, leading to granulomas that leave parts of your body numb and can be fatal.

Karen's life pre-illness, as you might be able to tell from the above picture, was freaking awesome. She had gone to school to be a recreational therapist and loved working with the elderly. She was a model and an actress. She dated stars from Clooney to Dwight Yoakam to Chris Farley (note: this book is worth it just for the stories). Clearly, when the illness hit, she was blindsided. Depression sat in that, in addition to the physical effects of sarcoidosis, left her essentially bed bound for a long time. She even missed important events like her sister's wedding.

She has always been very independent and so the thing that scared her the most was "becoming dependent on other people - on my family, on my friends, even on recreational therapists like myself" (56). She is very blunt in the book about the feelings she had and how difficult it was to do anything, something that is missing in a lot of books about illness. She would go between extremes, from hating being sick and questioning what she did wrong to turning "sickness into a good thing. I remember thinking, Well, if I'm this sick, maybe none of my sisters will have sick kids, because what are the chances of having so many chronically sick people in the same family? Maybe I'm taking the hit for everybody. Kind of like that fellow Je... never mind" (60). I have to say that before I met so many others with Still's, I felt that way too.

At one point, Karen was bed-bound for quite a long time and it wasn't until a famous friend stepped in that she got the right kind of care - and found out how close to death she really was. Luckily, she got the right kind of care, including MTX and prednisone, to shrink her granuloma and really save her life.

In the middle of all of this, she started working again and met the love of her life even if she didn't know it yet. She never really took the steps to educate him on what happens with her disease, how rare her case is, and how little the chances of her surviving this were. He found out all of this on his own, around the time they decided to get married.

I grew up thinking Duff (Karen's nickname) was the coolest. She was the epitome of early 90s style, with her short hair and signature 90s outfits. She really was all over, from her movie roles to MTV to Revlon ads. She is one of the first models I remember, and she even admits that many people liked her as a model because she was beautiful, yes, but an achievable beautiful - normal girl beautiful instead of Cindy Crawford drop dead gorgeous. To find out that she deals, on a daily basis, with similar feelings and pains as I do was shocking to me.

I really recommend this book. There are so many feelings and issues Duff deals with that many people with chronic illness also go through, and it made me feel less alone. It was also comforting to read the chapter written by her husband and to get more insight into how it may affect relationships.

I'd like to share some further quotes from this book. Some are from a chapter written by her husband, John, and they are notated as such:

Even when I felt able to, I didn't want to go out, I didn't want to face people and be judged, be compared to my old self. I didn't want to have people casually ask me how I was doing. I'd either have to lie or come out and say, "I'm really ill." I didn't want to lie, but I didn't want to tell the truth, either. I didn't want to talk about my illness because I couldn't quite believe it myself. I withdrew from even my closest friends because I was ashamed, and I didn't want to reveal my weakness. I was too independent and too embarrassed to ask for help. I didn't want to burden my friends. (74)

As I became comfortable around other people again, I did start letting my friend pitch in for me in practical ways, like bringing me dinner and running errands. But I'd needed to know that they were doing it because they loved me, not because they pitied me... helped me appreciate that my parents were helping me out of love, not as a duty. (80)

[Check out page 95 for tips on how to have a comfy hospital stay]

What I loved from the first about John was his character. He's a decent, genteel human being. And I know John doesn't love me because I'm a model. He got to know me when I was at my absolute worst, and he love all of me, including the disease. (133)

[John writing] Duff hadn't shared any information about her disease with me, so I felt like I was going through my parents' drawers, seeing stuff that I wasn't allowed to see [looking up sarcoidosis issues & survival rates, etc]. I was so scared and shocked that I didn't know how to deal with it. It was like reading somebody's journal, and I felt embarrassed I had gone on the Web and looked up the information. I had to talk to someone, so I called my mother. "John, remember the important thing is that you've fallen in love with her. Deal with that," she said. "That's what's important, the feeling you have for her, not the feeling that you think she has about what she's going through. You don't necessarily know what she's going through." (156)

[John} I also didn't say, "I love you... we're in this together." We're not in it together. She's fighting it, and I'm helping her fight it, but I'm not sick. I can't imagine how sick she is. We're in it together in the sense that we're a couple, but my role is to help her live the nonsick part of her life. I planned dinners, or vacations, or an afternoon of kayaking. If I knew that she wasn't feeling well, I'd say, "You know what, let's stay in tonight and watch a movie." Instead of staying in because we has to, because Duff wasn't well enough to go out, all of a sudden we had something to do together inside. (157)

[John] Here's this person that you love who's sick, you don't want to see them sick, you don't want to see them suffering, you don't want to see them in pain. Your instinct is to do something, to help in any way you can. Everybody deals with being sick in a different way, and the way Duff deals with it is to take it on by herself. I had to realize that being sick was her job at the time. Taking it on herself gave her the strength she needed. (159)

[John] I really admire Duff. It's kind of rare to find yourself in a relationship with somebody who's your hero. I'm married to my hero. What better thing could you possibly imagine? I have so much respect for how she's dealt with being sick. It puts a lot of things that have come up in my life into perspective. (160-1)

[John] Duff is utterly contemptuous of people who tell her, "This is going to make you a stronger person," or, "Think of all the good things that come out of being sick," and that attitude is something that I latched onto from the very beginning. There's nothing good that comes out of being sick. It's how you deal with being sick. I don't think I'm a better person because I've helped Duff face her illness, and I have no idea if it's making me stronger. (161)

[Visit pg 174 for tips on how to spot quacks & scams]

I do believe your body has the power to heal itself, which is why we don't die of common colds. Whether you call that the immune system or vis medicatrix naturae [healing of nature] doesn't matter to me. But there are times when your body can't handle the assault it's under. Sarcoidosis was a mutiny in my body - renegade cells attacked my spinal cord, lungs, eyes, and skin. Vis medicatrix naturae wasn't going to cut it for me. (182)

And I'm aghast over the New Age morality that implies that only the poor bastards that fight the hardest against their sickness will eventually kick it, or that it was something internal that brought on the disease, whether it was stress, or imbalanced chakras, or whatever. It's all just a moderately sophisticated way of blaming the victim, and that's cowardly, the last refuge of the pathetic. When people suggest that overwork brought on my sarcoidosis, I always say, "I've seen hard work. It's a tiny Dominican woman wrestling a 225-pound invalid into a bathtub. Modeling is not hard work." As for the idea that I brought my illness on myself, why on earth would I do that when I was at the top of my game? (183-4)

[Visit pg 201 for outpatient tips or 195 for a coward's coupon asking a former doc to forward your records]

Then, when it dawned on me that yes, I was indeed sick, shame set in. I experienced an illogical embarrassment about being sick, as if I'd brought it on myself, and that people might look down on me if they knew I was ill. I was at the top of my game, in the best shape of my life, I had more job offers than I could possibly take, how could something like this happen? What had I done wrong? I felt weak. I was very apologetic to my parents. I felt I'd failed them as a child. I was ashamed because I didn't know how to be a sick person, and I was afraid I'd do the wrong thing somehow. I couldn't face my friends because I couldn't face myself. I was embarrassed that I'd somehow lost my mobility and my happy-go-lucky attitude. Shame was more crippling at this stage than even the physical effects of being sick, which were considerable. (205)

Despite my deepest fears, it's not my independence I've lost - it's my innocence. I never took anything seriously, from my career as a model to my relationships. I still try not to take anything too seriously, but that attitude doesn't come as easily as it did. I'm no longer able to ignore my own mortality hovering in the background. (219)

Saturday, April 13, 2013

Day 13: Haiku #HAWMC

Friday, April 12, 2013

Day 12: Dear lil me #HAWMC

"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?

Thursday, April 11, 2013

Day 11: Tweet tweet tweet #HAWMC

It's springtime (FINALLY OMG) and that means that we get to hear the songs of robins and other gorgeous birds talking to each other about how much snow is still left in clumps all over your property. But this post isn't about the lovely songbirds brightening your day. It is instead about my favorite social media site.

Twitter is my favorite site for many reasons, most notably for the straightforwardness of the participants and the friends-like-family I have made through using it. Just to be fair, here is my interpretation of social media networks:

On twitter you can be as anonymous or as public about anything as you want. You can front as a celebrity (though not for long) or you can holler at celebrities and maybe even argue with one over phrasing and making jokes about hitting women... not that you'd be following Chris Brown I hope.

One of the best things about twitter is the use of hashtags - and how you can search by them. The #rheum hashtag is the one most often used by people living with rheumatic diseases like RA, lupus, Still's, and more. You can quickly find other people living with your same condition - or similar conditions - by merely popping into the search bar #fibro or #rheum or #chronicillness. It's amazing.

Tweet at me!

Facebook is... uhhh... a tricky subject. I like facebook and all but it seems to be the place you pretend to be the person your family and friends think you are. It's the place for horrid arguments on politics, women's rights, religion, etc. But to be fair, it is also the place to connect with others - in groups and on pages - who go through the same things you do. The thing is that it isn't so readily broadcast to the rest of the world. This may be good for an individual's life, but it isn't so good for awareness - especially when people tired of your posts can just hide what you say.

Like my statuses!

And Pinterest... let's face it, if you're not getting married, searching for recipes, or very crafty, there is not much that Pinterest has to offer you. It's great for ideas or for a laugh, but it doesn't do much in the way of chronic illness unfortunately.

Follow my boards!

Wednesday, April 10, 2013

Day 10: Wordless Wednesday #HAWMC

"It's often hard to like pictures of ourselves - post your favorite picture of yourself."

Tuesday, April 9, 2013

Day 9: Caregiving #HAWMC

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.

Monday, April 8, 2013

Day 8: Arthur the Animal #HAWMC

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.

Sunday, April 7, 2013

Day 7: Sensationalization of Illness #HAWMC

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.

Saturday, April 6, 2013

Day 6: Dear Arthur #HAWMC

[In case you're not familiar with my blog, I've had a rare form of juvenile arthritis since age 5. Arthur has been my nickname for him ever since the diagnosis.]

Hey Arthur,

Last time I wrote to you, it was 'celebrating' your birthday. I was thankful to you for the people you allowed me to meet and befriend, and proud of myself for all I've accomplished in spite of you. A month later, you managed to murder, with the help of idiot doctors, one of the most beautiful, kindest women I have ever had the chance to know. You robbed her of her wedding day, the love of her life, and the friends and family who loved her so.

How dare you.

How dare you take her away from us. She provided support and understanding that no one else I know can. She loved unconditionally, cared even if someone's pain may have been lesser than her own, and was always there for each person she knew. How dare you force Matt and his sweet family to handle her death when they should be picking out flowers and a venue for the wedding.

We were in the same place in life - sick, engaged, blogging, and pondering the children issue. She was the twin I never met, in every sense. Planning a wedding together was our goal. We were going to share ideas and help each other not freak out. When I bought my dress, a time when any girl would be emotional, I cried not because of the joy of finding the dress but the sadness that I could not share that moment with her. My instinct was to send her a picture right away, but I know I can't and it just breaks my heart. I can't even think of getting ready for my wedding without her to talk to.

It has been four months now since you took her from us. I find myself even more than before struggling with the idea of a life after death, not because I suddenly believe in a god but because I don't want to believe that she's not around anymore and I don't want to believe that I would be permanently gone from my fiance either should something happen. I've always thought many religions were a way to explain what we don't understand or don't want to think is true, and it's very hard for me to want to go against all my reason to believe Laura is still around somewhere waiting to welcome us to a land with no pain.

Arthur, you are so lucky you're not a real person because the hurt I want to inflict on you is indescribable. I know so many little kids with this, and I can't help but thinking how scared I am for them now having known someone so wonderful lost because of you and idiot doctors. There are a lot of idiot doctors, especially when it comes to you.

One of the things that Laura taught me was how to come to really understand my body and not push it further into a flare-up. She encouraged me to get in the pool with my PT ladies and take back my body. Because of her, I am able to run now - not even close to a mile a day, but it's getting there. I run because it makes me happy, because it challenges you, because she would be proud of every step.

I thought I was determined back in November to beat you, but there is no way to put into words how much fight I have in me now. You will not win. You will not take me from my family and friends. You sure as hell aren't going to make me take anything you dish out lying down anymore. I refuse.

Friday, April 5, 2013

Day 5: What I want to be when I grow up #HAWMC

If there were no limitations to what I could do with my activism, what would I do?

The fiance and I had a conversation at one point where he said that he wanted a good enough job with the right kind of pay that I didn't feel like I had to work.

Holy crap, I marrying that awesome man. Sorry, still a little surreal to me.

He said that he wished I could have my activism and my blogging as my job... if I wanted of course. And to be honest, this is totally what I would want.

If money was no object right now, taking care of myself and being an activist for others would be my job. If my health situation was no object either, I'd love to be a yoga instructor but that's not happening anytime soon!

All I've wanted to do with my life is to help people. Who could ask for a better job than that?

Thursday, April 4, 2013

Day 4: Sharing Resources #HAWMC

One of the best resources ever for me was my dear late friend Laura at Still's Life. Many of the pages and sites she shared got me through a lot of pain, worry, and frustration. Using her as a guide, here are some really great pages, sites, and blogs to help you cope and learn more about Still's Disease.

There are many other resources out there to explore, but these are great places to start no matter if you, your child, or someone else dear in your life is dealing with Still's Disease.

Wednesday, April 3, 2013

Tuesday, April 2, 2013

Day 2: The Top 5 Things to Know About Still's Disease #HAWMC

The primary illness that I deal with is Still's Disease, or Systemic Onset Juvenile Idiopathic (or Rheumatic) Arthritis. You can read about my personal story here. You can find out a little more about Still's here, Sir George Still here, and complications associated with the disease here.

The top five things I want people to know about Still's are:

  • It requires drugs used in chemotherapy and organ transplants, like many other forms of autoimmune arthritis 
  • It causes a malar rash and high spiking fevers (high enough they can cause brain damage). The rash is exacerbated by emotions, fatigue, temperatures, manipulation (Koebner phenomenon), and disease activity. My face isn't red because I'm fat and walking - it's red because I'm ill.
  • There are only technically two drugs on the market FDA approved to treat this disease, and they're usually the last in line to be used as treatments unless you find a very aggressive doctor. They also are some of the most expensive - and dangerous - drugs for autoimmune arthritis.
  • Some work with stem cells has been done with this disease. For many it did nothing. Some died in the process. Others survived and had remarkably improved disease activity, including remission.
  • It can kill. In fact, complications from this disease killed one of my greatest friends and fellow blogger, Laura from Still's Life. She was the first person outside my family I found with this disease, and she changed my life for the better in ways I can't even begin to put into words. She has been gone for nearly four months and I still have to stop myself from texting her about both of our upcoming wedding plans. I miss her every day.
I also live with a number of conditions related to my Still's - asthma, psoriasis, fibromyalgia, Sjogren's Syndrome, scoliosis, and a number of other bone deformity issues.

Monday, April 1, 2013

Day 1: Why I Participate #HAWMC

This is the third year of the Wego Health's HAWMC, or health activist writers month challenge. Last year was the first year I participated, but only because during the inaugural year being a full-time employee (basically running a hotel) and going to school full-time was a little much on its own - add in being sick and having to write a post every day and I was ready for a nap just thinking about it! But I definitely thought it was a cool idea and I'm glad I could participate last year.

I find often when blogging that I hit a really good or really bad health streak and so I avoid writing for a while. Currently, I'm in a good streak, being able to run (granted, a quarter of a mile a day or even a half!) again and planning my wedding for next summer. Oh busy busy wedding planning! I find HAWMC gives me a reason to come back and really focus on writing again. It doesn't help that it ends right as May begins, bringing with it a walk for the Arthritis Foundation, World Autoimmune Arthritis Day, and National Arthritis Awareness Month! It's a busy time for health activists and HAWMC helps me get in the right frame of mind.

As such, welcome to a month of actual posts every day! Thanks Wego Health!