Location: the frozen tundra known as Wisconsin
Diagnosis/Diagnoses: Systemic juvenile idiopathic arthritis (SJIA/Still's disease), asthma, fibromyalgia, psoriasis, depression, general anxiety disorder, post-traumatic stress disorder, and various joint issues
Age at Diagnosis/Diagnoses: 6, 5, 24, 21, 24, 24, 26, and 25/6 respectively
How are you currently treating your conditions?
I'm currently taking a handful of vitamins due to some deficiencies along with several medications. I take Lyrica for my fibromyalgia pain in addition to etodolac (NSAID) and cimzia injections for my SJIA. Cimzia is the third TNF drug that I've been on and we will likely change up injections soon due to side effects and efficiency questions. I also take an antidepressant that, along with therapy, assists with my depression, anxiety, and PTSD. I have an inhaler for my asthma finally after having it get really bad with my recent bronchitis issues. I've had to do PT numerous times and recently had an injection into my iliopsoas bursa to try to resolve some bursitis and tendon issues.
I do a lot of meditation. Not only does it help with my mental health, but I'm also better able to handle my physical issues because of it. I have a number of allergies, so I have to be more careful about what I eat or expose myself to. I have a possible Raynaud's diagnosis as well, so I have to stay extra warm here in Wisconsin. It's not easy because it's Wisconsin, but also because I'm always cold!
What are the biggest challenges you have faced since your diagnosis?
I think the biggest issue has been slowing down. I've always been a bit of a busy body or workaholic. In high school I took honors and AP/IB classes and still did plays and other activities. There was a point in college when I was working three jobs and taking a full class load. When my SJIA hit really hard my senior year of college, I had to just push through it. It has stayed so active that I had to drop out of graduate school. I've always been the smart girl and to not have my master's degree is very hard. I'm inspired by my dad who got two master's degrees while working full time and having a busy family, and I hope one day that I'll be able to try school again. For right now, I really have to take it slow.
Another area I have to take it slow is in being active. For the third time, I've been pushed back to water exercises and essentially banned by my docs from doing much more than walking or hiking on land. I used to run upwards of 20 miles a day when I was in high school. Having to go so slowly is agonizing.
I've also had a really hard time coming to terms with the diagnoses other than SJIA that I now carry. I always thought I was fairly well off and that SJIA was my only big issue.
What are your favorite tips and tricks for managing everyday tasks?
Sometimes this is a hard question for me to answer. I've been sick so much of my life that I grew up with limitations and so naturally do a lot of things differently than others do. One of the things I do have a hard time with is cleaning. Try to wash dishes when they're warm because it's much easier to get them clean that way. Flip flops are great at pulling up hair and fur from your couch or your floor. Another thing I've discovered is that Dermablend makes a redness reducing cream that really covers up lupus and other rashes, so I've finally started wearing makeup because I know I can cover up my butterfly rash. They also make a full coverage makeup but it is really heavy and my pores don't handle it well.
How do you manage to keep facing forward every day?
With a lot of support. My husband is phenomenal at helping to get me motivated and taking care of me if I'm doing poorly. My sister, my family, and all the wonderful friends I have really keep me going on hard days - especially our three guinea pigs! They're my babies and, even if I'm having a really hard day, I will still do what I need to in order to take care of them and show them love.
If you could go back to diagnosis day and tell your past self one thing, what would it be?
The biggest thing I was scared about was ending up in a wheelchair. At the time I was diagnosed at age 6, research stated that SJIA kids were generally in a wheelchair by age 8. I was scared to death that it would be a sudden process - that I'd wake up on my 8th birthday magically unable to use my legs. When that didn't happen, the fear built up morning after morning. It got to be so much that I couldn't sleep at night because I was so afraid. I would stay up all night and sleep in the early morning instead.
I would love to go back to that day and tell myself that the research was wrong, to comfort myself. I'd also love to tell myself how important getting treatment would be once I got that option, but that's another story.
Do you have a blog you would like to share?
Definitely! Not Standing Still's Disease
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