Autoimmune Stories: Kirstin Tells Us How She Found Wellness With Lupus & Myasthenia Gravis.
Updated: Jul 15, 2019
First up in our series of 'Autoimmune Stories' is an interview with Kirstin Falk; one of our Instagram followers. She has kindly shared what she went through from symptoms and diagnosis to using diet and lifestyle as medicine. Read all about her journey to living and feeling well again - because sometimes it's good to get out of the text book! We'd love to inspire all of you with more stories, so if you have a story that you would like to share do get in touch with firstname.lastname@example.org
What health issues are you dealing with and when did they begin?
I have been dealing with chronic disease and autoimmune issues since I was in my teens. The most impactful have been Myasthenia Gravis and Lupus (SLE).
Tell us about your diagnosis story, how long did it take to get a diagnosis?
When I was in high school, I got a flu that lasted for a few months (most likely EBV virus) and since then I started having joint pain. I tested positive for Rheumatoid Arthritis and had inflammation markers, so we consulted a Rheumatologist. At that time, they decided it was unclear that I had RA and wanted to watch it before using medication since I was so young. So I just learned to live with the pain. A few years later, I started to notice that my right arm would get tired as I was brushing my hair, which was strange since I was such an active athlete. Then I started slurring at the end of the day. Also, if you looked at pictures, you could see the right side of my face drooping, and I lost the ability to smile. Finally, I went on a ski vacation with friends, and all of a sudden the muscles in my legs got so weak that I couldn’t ski and I started slurring again. I knew something was very wrong and went to our family doctor, Dr. Barry Brown. I was beyond lucky because he identified Myasthenia Gravis right away and sent me to a neurologist to get tested. They confirmed it with a Tensilon test and immediately put me on Mestinon. This was in early 1993.
I elected to have a thymectomy at UCSF, and had plasmapheresis in preparation for the surgery. Unfortunately the catheter was infected and I got a blood infection. That set me back and I was in the hospital for two weeks battling an infection they couldn’t stop. At one point they thought it had spread to my heart. I went ahead with the surgery, and actually got worse for a few months, which meant I had to go on high doses of prednisone. My Lupus (SLE) began to emerge when they began tapering me off of prednisone shortly after I graduated from college. I struggled with joint pain, rashes, and random infections for years, which would get triggered by sun, stress, or hormones.
Which symptoms were making your life difficult?
The hardest thing about MG for me was when it affected my speech and ability to swallow. I started choking on everything, especially water. It was devastating to me. I stopped eating and lost a lot of weight and most of my muscles. Losing the ability to smile really affected my self-esteem and I wouldn’t allow pictures of me for a long time. The challenge with Lupus was the joint pain and constant rashes. At one point it was attacking the joints in my feet, and even walking was painful.
Tell us about some of the emotions you experienced.
There will always be a part of me that is grieving the loss of “my health.” So I have experienced the full range of emotions associated with grief - from anger to depression. At the time all of this happened, there was not much information or resources to help. You couldn’t access the internet for research or learn about other people through social media. But by far the worst emotion was the deep isolation and loneliness that I experienced. There were times lying in the hospital bed, connected to monitors and IV’s where I couldn’t even move, and I had horrible anxiety attacks. Years later, I was diagnosed with PTSD and therapy really helped me address that. Most survivors know that a common response to trauma is disassociation. There were points where if I had allowed myself to fully feel, I don’t think I would have made it. (Like the time they had to put a 5lb sand bag on my groin to stop the blood from spurting out of my vein.) It took a long time to emotionally recover from that entire experience.
What made you decide to go beyond medication and primary care?
The moment they told me I had to go on prednisone. It was heartbreaking news to me. So many people told me how they gained huge amounts of weight. I just decided that wasn’t going to be me and I started keeping a food journal to track everything I ate. I have a challenger personality, and never accept something just because someone says I should. I am also an information gatherer, and need facts or research to draw my own conclusions. So I inherently couldn’t accept Western medicine’s approach that you destroy one part of your body to heal another. I also couldn’t accept that mind and body weren’t linked, and that the foods we eat don’t impact our health.
Tell us about your journey to recovery.
The first thing I had to tackle was my spirit. I committed to being well. A big part of that was accepting what had happened to me and having compassion for myself. A major turning point for me was lying in the hospital bed, confronting the real possibility that I might end up in a wheelchair, and I decided then that my body might become weak but my mind never would. And I had to do it my way.
I knew the root issue for me was inflammation. So I looked to Chinese medicine for information about diets that helped people with arthritis. I learned about nightshades and to avoid them during flare-ups and the power of ginger, turmeric, and garlic. I also discovered fish oil and flaxseed oil and have taken them every day for over 20 years. I also have had the good fortune of living in Northern California where I was exposed early on to eliminating processed foods and eating organic, whole foods. We ate whole foods growing up, so I already had pretty healthy eating habits. I also had the benefit of meeting an amazing women who was my mentor in life. She was constantly teaching me about alternative health options. Over the years, I eliminated gluten, which made a significant difference for me. I also avoid sugar as much as I can. I have always been a believer in healthy fat and farm raised meat. And finally, I believe working out is critical to overall well-being, and that it is really important for women to lift weights.
What was the result of making diet and lifestyle changes?
It has been an evolution. Some days are better than others. But I am convinced that I am able to bike, ski, and do yoga because of the diet and lifestyle changes I made. I just feel better eating whole foods and now there is a lot more scientific evidence to back up why. My MG has been in remission for over 20 years. I no longer suffer from joint pain, and have little or no inflammation markers in my blood. I do still have Lupus (SLE); I have low complements, and a slightly elevated anti-DNA antibodies and I take 200 mg of Plaquenil daily. Yet, I rarely have flare-ups and it has never attacked my organs. My gut is healthy and strong, which is amazing to me after all of the medications that I have had to take. So I consider myself lucky compared to what other people have experienced.
Did you use any other alternative therapies that helped?
I am a huge believer in trying everything and seeing what works for your body. It is all about knowing and listening to yourself. There is so much wisdom about health beyond traditional medicine. I find acupuncture very helpful as well as deep tissue massage. Yoga has been a game-changer, and I highly recommend it. I know there are days when you can’t do much and I truly believe in the healing power of nature. Just getting outside and breathing fresh air is often enough to lift mind, body and spirit.
Do you have any favourite resources that helped you? A blog? A book?
It is sort of funny to look back now. My only resources at the time I was first diagnosed were doctors, books and pamphlets that I ordered from the Myasthenia Gravis Foundation of America. I was incredibly lucky to have met some amazing doctors along my journey who honoured my approach. But by far the most amazing resource I have had are the people in my life. Today, there is so much information and everyone has to find the resources that work for them and their body. You have to trust your gut and constantly educate yourself.
What one thing did you learn that you’d like to pass on to others?
Where do I start? It is hard to just say one thing. Struggling with chronic disease teaches you lessons every day. I felt ashamed for a long time having a disease, and I never talked about it or asked for help because I didn’t want people to think that I was weak, complaining, or to take pity on me. What I have learned is to rethink my definition of strength. The reality is being radically vulnerable takes a lot more courage than being stoic. I was so hard on myself for so long, and self-destructive in my effort to be perceived as strong. I truly hope that others don’t make the same mistake I did in that regard. Telling your story is the most powerful thing you can do. Brene Brown was a huge influence in understanding this, and Selma Blair has been such an inspiration on Instagram.
You can follow Kirstin on Instagram @kirstin_falk and on Twitter @kmfalk.