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.

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

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

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

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

“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

“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

“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

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

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!

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.

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.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.

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)