I am able to get outside into nature almost every week, I am able to work in healthcare as a designer helping to improve the experiences of other patients and clinicians, and I’ve recently done a good job at maintaining a pretty good social life.
My friends have gotten used to me bowing out of events or bailing last-minute sometimes if I’m not feeling well. My husband is especially understanding of my limits and always encourages me to ‘be calm’ and take a break.
I often have physical sensations that have not been officially ‘diagnosed’ as part of my conditions but that I recognize as being autoimmune in some manner. Things like prickling in my legs, a ‘coolness’ in my toes, hot joints, extreme fatigue, and this feeling that I can only describe as ‘achy bones’ that I feel down the backs of my calves and in my forearms sometimes when I wake up. It truly feels like the bones are aching. It’s difficult to put these sensations into words, much less have them officially recognized as part of an autoimmune disorder (or family of disorders.)
It is scary when a new symptom crops up, or when it seems that one is getting worse. Sometimes I will have completely unrelated sensations in my body that I will attribute to one of my autoimmune diseases before realizing that it’s just a coincidence. My left arm was bothering me recently, and I thought, ‘am I having a heart attack due to Sjogren’s Syndrome heart problems?’ It seems like a ridiculous thought and I’ve since realized it’s probably just a muscular pain due to sitting too much for work, but that’s life with multiple conditions.
You’re always wondering.
-Any memorable moments while being tested?-
I was fortunate to get a quick diagnosis, after my mom noticed that my smile at the dinner table looked more like a grimace. She got me into the doctor right away, and I was soon seen by multiple neurologists who made the diagnosis.
Regardless of the speed with which I was diagnosed, the painful or uncomfortable tests do stand out in my mind. While I was in the process of getting diagnosed with Myasthenia Gravis at age 13, I had to have an EMG test that sent shocks through my muscles to measure my body’s muscle response. I remember sitting in the dim exam room in the hospital with my gown to the side and electrodes placed on my neck and back, and having shocks coming at intervals. I hated it. I did ok during that session, but since that time I have not been able to tolerate electrical shocks in any capacity. Another neurologist decided to re-test me when I was about 25, and I walked out in the middle of the test because it was too emotionally overwhelming. So now I don’t do the EMG.
While I was trying to figure out some other symptoms, I had a test to measure my ‘dry eyes.’ For this, they put little pieces of paper in the corner of your eyes, and the paper is soaked with a chemical that stings. This is intended to make your eyes water, so that they can measure the extent to which your tear production is normal. It sounds barbaric. That was pretty awful as well, to have chemical-soaked papers sticking out of the corner of your eyes, but it did lead to my secondary diagnosis of Sjogren’s Syndrome, which was a relief because it helped explain some of my other symptoms that couldn’t be attributed to Myasthenia Gravis (joint pain, stomach problems, neuropathy, and I realized that my ‘dry eyes’ were part of the Sjogren’s as well.)
-What would you like to see more of from your healthcare giver?-
My neurologist is my main provider for my primary condition, Myasthenia Gravis. He is pretty great, and progressive, and he usually spends a full 30 minutes with me at every visit. He will email me if I email him, and he’s even emailed another provider (an herbalist) about my care. I hold him as a very good example of the type of provider I want to interact with.
The ‘whole body’ view of an autoimmune patient is difficult, and seeing multiple specialists over time has been challenging. Specialists like neurologists and rheumatologists do not always feel confident about commenting on symptoms related to ‘other’ autoimmune conditions that don’t fall under their specific domain.
My big wish is that we could all be in a room together to talk over my symptoms, how I’m doing, and what a good plan for action is.
-Have you experimented with diet? How has your diet helped you?-
I have extensively played with my diet in an attempt to manage my IBS symptoms, which have flared on and off since 2007, and maybe even earlier. Currently I avoid dairy, gluten, fruit, and high-fructose sugars like maple syrup, honey, agave, and high-fructose corn syrup. Through self-tracking and working with the start-up Mymee, which is a health data coaching service, I found that high-fructose sugars directly aggravated my sensations of my fingertips burning and becoming numb. Within a half hour of eating or drinking fruit, my fingers and toes would be burning. This was an amazing revelation that has changed my approach to eating.
Experimenting with visualizing my symptoms:
In order to better communicate with my doctors about how I’ve been feeling, I have some personal projects to visualize my symptoms – both on the outline of a body, and showing their severity over time on a timeline. I’ve had a wonderful reception from the doctors I’ve shown these projects to, and I have hope that other patients could use this type of expression to advocate for themselves and tell their stories more effectively. You can read more about my experiments on my blog.
-How would the use of health & wellness type apps help you in your everyday life?-
I currently track aspects of my health using a spreadsheet. I think tracking symptoms is helpful, if you can keep up with it. Being able to communicate with my doctor and express how I am feeling would be a big help. I am a fan of apps or services that helps patients express themselves, communicate more effectively, and better understand their conditions.
The trick is not requiring too much work from patients and creating something that fits into their daily lives.
Katie has been living with Myasthenia Gravis for over 20 years. She is now a User Experience (UX) Designer and her mission is to help patients tell their stories and help providers focus on the work they love through thoughtful UX design & research and close collaboration with fun, talented people.
We are looking for Autoimmunity stories for an upcoming workshop at Stanford Medicine X. If you would like to lend us your voice, send us an email! DrBonnie360@gmail.com