Year: 2013

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!

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

Posted on by Grayson

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)

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.

Day 6: Dear Arthur #HAWMC

Posted on by Grayson

[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.

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

Posted on by Grayson

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?