Welcome to You, Me, Sex, Love, and Arthur!

 

I am Kirsten Schultz and I blog over at Not Standing Still’s Disease in addition to my day job in pediatrics and going to school for my masters in health care administration. Oh, and I also live with Arthur, my husband T, and three adorkable guinea pigs.

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In 1993, I fell ill with what we knew a year later as Still’s Disease or Systemic Juvenile Idiopathic Arthritis. I was five years old and can proudly boast of living with Arthur, my oldest and most constant friend, for 22 years this coming November. Since we have lived together for so long, he’s followed me around during every single relationship I’ve ever had from my first kiss from a freckled mop top boy to my first kiss as a married gal.

 

My husband and I met almost eight years ago in college. I casually explained on our first date to Culver’s, the delicious frozen custard hub of the midwest, that I had ‘this arthritis thing’ and that it was just something I dealt with. When I said that, I had been doing fairly well in my mind. I made it through one Wisconsin winter while going to college and was convinced that I would be able to handle everything that was thrown at me. I also didn’t fully understand what I was dealing with due to a lack of medical care growing up. The irony that I was a sophomore at the time is not lost on me.

 

I began blogging to explain my illness for T and I to learn more about it together. We were already in it for the long haul within a few weeks and we wanted to know what we could be facing. I was mortified at some of the things I found out about my disease – the complications, issues with access to treatment, the lack of resources for young adults, and more. At the same time, I was comforted by finding some of the most amazing people I’ve ever known in the online rheum and spoonie communities. The experience turned me into a health activist, and I’m grateful every day for it.

 

During my senior year of college, I was understandably dealing with a lot of stress. I only got through it because of my amazing roommate Katy and our Law & Order marathons. It’s no surprise then that my illness – which had not been treated with anything more than an NSAID the entire time – got progressively worse and worse. By the time I had graduated college and started graduate school, I was on several different medications and feeling just downright awful – I had one of the worst flares of my life which sidelined me for the better part of two weeks and started my on-again/off-again relationship with prednisone.

 

More and more of my fun sleepless nights were replaced with nights kept up by anxiety, aching joints, fevers, and itchy rash. I was unable to continue school within two years and had to stop. I also had to switched jobs a few times to find one that was better for my body and provided me with insurance. In the middle of all of this, I was diagnosed with fibromyalgia and then T proposed. I began more medications and, between that and my worsening medical issues, our sex life and intimacy began to be affected. We both deal with depression and dealing with all of this on top of planning a wedding and other issues was really tough.

 

Back when I was in high school, I volunteered with Planned Parenthood on getting the word out about healthy sex, from safe sex to communication and more. I realized that I don’t always practice what I preach and began to be one of the first people to start addressing sex with a rheumatic disease from a personal standpoint while talking about it publically. Earlier this year I attended the Arthritis Introspective G8 gathering in Milwaukee, where we heard from a woman discussing sex with rheumatic and arthritic diseases. That reinvigorated this idea of discussing sex for me.

 

It just got me thinking more and more about how little sex is talked about in general, but especially in communities where differing abilities or illnesses can easily get in the way. Our medications can affect our sex lives too, even if they don’t always say so upfront. Even more than that, ableism is hard to overcome. Those with disabilities are often seen similarly to children. We’re not expected to fully function, so many times sexuality and intimacy aren’t things we’re expected to deal with. That ableism is in our society, but it can become internalized to the point we feel we’re unlovable.

 

I’m here to tell you I think that’s wrong. You deserve love and pleasure and to feel good about yourself and your body, despite the things that may be wrong with it. I want my CreakyJoints blog to be a safe place for you. I want you to feel comfortable asking me questions or suggesting topics in whatever way is best for you. I want to be someone who can help start this conversation on how our diseases affect not only our sex lives but our emotional intimacy with others, whether that’s with our partners, close family and friends, or ourselves. I don’t believe in the idea that we have to love ourselves to love other people, but I can tell you that for me it really helps.I believe that seeing ourselves as worthy of good things also helps us to be better self-advocates – something that we all need.

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Kirsten Schultz, Wedding Day