My Autoimmune Health Journey
We all have that moment (or many moments) in life where you realize that nothing is ever going to be the same. A marriage, a divorce, a baby, a death, a breakthrough, a letdown. I’ll do other “happy” posts, but this one is about the game-changer that is my health issues.
No matter how hard I try to get back to the life I knew before, there are some things in life that are just different. They aren’t guaranteed to go away. They become somewhat of a companion. To struggle through. To grow through. To be humbled through. To actually lean into rather than away from. But that only comes with time. We’ll start at the “beginning.”
In 2012, my life changed dramatically like I would never have imagined. I was extremely healthy, strong, a dancer, a runner, and world traveler. I grew up with a chronically busy family and super-parents who always seemed to help everyone in need on top of running their own business and being involved in each of their kid’s hectic, sports-filled and music-filled lives. So I go to community college to take gen-ed classes before transferring to a four-year university, but the real reason I was attending college was for dance. I was flexible, strong, and looked toward a future either as a dancer at Disneyland or something else that would be magnificent and praiseworthy.
As I returned for year two of college and another great semester, the symptoms I started experiencing were different. At first just my feet hurt. Then my joints. Then wrists and shoulders and, well the list goes on. I became less and less able and more and more sick. In a matter of weeks, my body shut down to the point where I could no longer even put my own hair up or even grab something off the ground without falling over. Heck, a glass of water felt like 40 pounds, and I tried to convince my dad that my car, that I had been driving just fine for the past four years, didn’t have power-steering because it felt so heavy and hard.
Fast forward to 2020. I should be dead twice now, and yet twice have I gained back almost all of my muscle strength and a good portion of “normalcy.” It was a rough battle, but I grew more emotionally, spiritually and mentally healthier than ever before. Hah, maybe someday my body will catch up to the word healthy. Now fast forward 4 more years.
In other posts, I will dive into the “in between” of what has happened between my 19-year old self and my now 26-year old life. But to start, I just want to say that I wouldn’t trade my glorious, chronic illness-filled experiences for anything because they’ve made me who I am and tested me beyond any other means I could’ve chosen for myself. They have been a catalyst for the majority of my growth, holistic healing, and outlook on my beautiful, messy, abundant, and challenging life. So more about the specifics:
I have two autoimmune diseases, Scleroderma and Polymyositis. They are autoimmune diseases, which means my body has mistaken my muscle tissue and skin as foreign invaders, thereby attacking itself. My integrative doctor also tested me for lyme disease and I was positive, so I did 9 months of antibiotic treatments as well.
For an idea of the rarity of scleroderma, only about 0.01% of the population has Scleroderma, whereas Lupus patients is at about 0.1% and Rheumatoid Arthritis affects 1% of the population. In other words, what I have is very rare considering that most people have never heard of it.
Scleroderma, as mentioned before, relates to the hardening, or tightening, of the skin. There’s two types, limited or diffuse scleroderma, and the latter (which I possess) affects more of my internal organs as well as extremities and connective tissue. In layman’s terms, scleroderma affects my entire body and has personally caused the following: decreased mobility especially in my shoulders and hips but also my knees and almost all other joints, difficulty swallowing, shortness of breath, weight loss, major GI issues, Raynaud’s in my fingers (very cold, turn white and blue and go numb, etc.), grip loss, and difficulty bending my fingers and toes. My most recent (and quite possibly most dangerous) setback has been some interstitial lung damage that we are now monitoring in case it worsens.
Polymyositis has affected me in different ways. It is characterized by extreme muscle weakness and fatigue in my neck, hips, legs, back, shoulders, hands and fingers; this generally makes it challenging to walk up stairs, stand from a sitting position, and move quickly or walk long distances. My muscle inflammation is far beyond normal range causing random bouts of fatigue, exhaustion, and lots of frustrating situations where I remember what I used to be able to do but can now longer participate in.
To be frank, there is no cure.
However, over the past many years, I have accumulated a large “toolbox” of both allopathic and naturopathic medicine that has helped me through. One could say that I’ve tried to attack these diseases from pretty much every possible angle (following in my parents’ go-getter footsteps): prayer, major diet changes, nutritional supplements, western medicine, prayer, physical therapy, rest, exercise, chiropractors, massage therapy, acupuncture, essential oils, allergy tests, functional medicine doctors, nutritionists, prayer, you name it. As exhausting as it is to feel like I’m my own doctor at times, I am better for it.
So I’ll leave it there for now. But a quick side note:
For anyone who has autoimmune or chronic health issues, you know that the “title” of your disease is never the full extent of what’s actually going on. And I just want to speak to that and affirm it. There’s always much more that people don’t see behind the scenes. Side effects from medications. Acid reflux. IBS. SIBO. Nausea. Headaches. You name it. And that’s okay. We all just have to remember that there are many battles we don’t see people fighting, which is why kindness goes a long way.
I’m so grateful to have a supportive, hopeful and helpful community around me. I am more than happy to share more about my experiences and hope that others will be able to learn from my thoughts and maybe resonate with HOPE in some way or another. I’m a pretty open book when it comes to what’s been going on and am grateful for the opportunity to go through such a trial. I truly am blessed.
