Juvenile Idiopathic Arthritis (Still’s Disease), Chronic Neck Pain, Migraines, Post Traumatic Stress, Undiagnosed Neurological Stuff
Bio (Who are you? What do you do? Tell me about yourself)
I fell ill with my Still’s Disease and asthma when I was five. The asthma was diagnosed quickly, but the Still’s took 8 or 9 months. At one point I was misdiagnosed with leukemia and given six weeks to live – right before my sixth birthday even. From ages 7-21, though, I was unable to access healthcare due to living in an abusive and neglectful home. Once I turned 19, I began blogging about my experiences and health to help explain to my now-husband what I was dealing with. Soon, other patients and organizations began reading my site. A decade later, I run two sites – Not Standing Still’s Disease about my own journey and Chronic Sex about the intersections of health issues and sexuality – in addition to presenting at conferences around the world. I work a few jobs, but they’re all things I’m able to do from home because I simply can’t do a ‘normal’ job anymore. Writing helps me cope while helping others feel heard and understood.
Is there anything that helps you rise above your condition? (Include anything that has worked for you. Examples: conventional medication, supplements, alternative treatments, diet, your faith, religion, healers, spirituality, exercise. Please also include any advice, tips or tricks you may have)
I take medications each day to help control some conditions and limit the pain I deal with from others. It definitely helps because, before medications, I wasn’t in a good place mentally or physically. I try to avoid foods that I know trigger issues for me, whether that’s GI/IBS stuff related to my fibro or swelling and pain from my Still’s. I’ve been tested for Celiac but that came back inconclusive. Still, I know gluten/wheat causes a lot of issues for me, so I avoid it. I try to limit my dairy intake, too, which is hard in the dairy state of Wisconsin! I find acupuncture very helpful and go to a local place with a sliding scale fee so that I’m able to afford it. I also get trigger point injections for my neck and shoulder, do physical therapy, and workout several times a week. If I don’t get moving, the pain stays and grows, so even hitting the gym for 10 minutes on a bike is helpful. CBD oil is very helpful for me as well, whether that’s vaped, ingested, or in a lotion. I also use Talkspace for therapy and it’s so helpful to be able to text my therapist versus heading to yet another appointment. It’s a lifesaver. I’ve put together a list of other tips and tricks here.
What does life look like at its best with your condition? (Describe what a good day looks like)
Right now, the best day looks a lot different than it used to. I get up as my husband leaves for work and spend time with our guinea pigs. They’re adorable and incredibly helpful for my mental and physical health. If I don’t have any appointments to head to, I get to the gym and get moving a little bit. It helps me keep a range of motion in angry joints, ease some pain, and start my day on a motivating note. When I’m done, I might run errands, take care of some household stuff, shower, or just snag something to eat. When I’m done with that, I start working on writing pieces, scheduling social media for the companies I work with, and other miscellaneous work stuff. By the time my husband gets home, I start working on dinner (whether that’s cooking or deciding what we’re doing). After that, I actually do more work before bed. If I’m lucky, I’ve had a tolerable pain day. I do a range of motion exercises throughout the day, whether or not I’ve been to the gym or PT. I haven’t had any rash or had to wear any braces or KT Tape to stabilize my joints. I’m also alert and not struggling to get stuff done because of brain fog… all that said, I don’t usually get quite as lucky as all this.
What challenges have you faced in regards to your specific situation?
Still’s is a rare disease, so that’s been a challenge to handle. Finding a rheumatologist with experience in treating it took a long time. It’s taken a long time to sort out what issues are connected to what conditions because I have so many in total. This undiagnosed stuff that I’m dealing with has baffled two neurologists and my rheumatologist so far. I’m not even sure what to try next, but I know I have to figure it out – I wind up having to act like my own Dr. House to get stuff taken care of. Additionally, my childhood medical records were destroyed and I do not have contact with my mother due to abuse. There’s a lot I have to figure out for myself incredibly often.
They say our life experiences shape who we are. How has your condition molded you into the person you are today? How has it inspired you and what strengths have you gained from your health journey?
I tend to be more compassionate and think outside the box because of things I’ve been through. At the same time, my past abuse has turned me into someone who also doesn’t take shit from other people. If I can help people with the things I’ve been through – and be talking through these things openly – that’s what I want to do. There are a lot of people who like to say that their conditions or experiences don’t define them – for me, though, that’s the opposite. I do what I do and I am who I am because of those things, not in spite of them. In some weird way, I’m grateful for them because they help show me more about what needs to change in the world – and how I can help jumpstart that change.
What is the one life motto or mantra that helps you to keep fighting/going on with the condition and why?
Laura, a late friend of mine, always said “Life with Still’s is still life.” It’s something that comforted me a lot when I was initially writing and after Laura passed away. Something I’ve always liked for myself, though, has been “kicking ass and taking pills.” It helps remind me that my illness crud is an addition to me. It’s not everything, but it’s certainly not nothing, either.
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