I remember being diagnosed with Dermatomyositis like it was yesterday. Except, it was over 20 years ago, when I was stuck in a very bad place and faced with trauma.
I was 32 years old when I began having symptoms, although my doctors felt that my symptoms had been gradual and I just wasn’t aware of them. Fair enough, I did just have the most horrific experience in my life prior to noticing my symptoms. Which is why my rheumatologist wasn’t too shocked after hearing about my sudden life changes. He mentioned that we all carry dormant viruses and cancerous cells in our bodies, and when tragedy or trauma affects us and shocks our physical environment it can then trigger the worst.
My symptoms began with shortness of breath and chest tightness. I had been a healthy young woman up until then and an avid power walker, so I knew something was shifting in my body. My husband at the time just chalked it up to ‘being out of shape’ because I did fall back on my walks and workouts. I just didn’t have the energy, another symptom that I didn’t pay much attention to. The fatigue, and boy was it heavy!
As the weeks went on, those symptoms began to increase and then I started to experience the muscle weakness and pain. This is when panic set in. I knew there was something seriously wrong and it wasn’t just being out of shape. After I noticed these new symptoms, it didn’t take long for them to increase to the point where I couldn’t function. It took SO much energy to try and get out of bed, shower and dress myself until one day I just couldn’t do it anymore. I was shattered when I had to call my work one morning and tell them that I couldn’t move and was unable to work. That was my first day of disability and facing my new life ahead.
By the time I saw, and met, my rheumatologist I was already confined to a wheelchair. It took them four months to diagnose me with DM (very lucky by the way!) which was determined by a muscle biopsy. I was immediately put on the first protocol of treatment, methotrexate and prednisone. Now these treatments, as horrible as they are, ended up working for me and it took a very long time until I began to respond well and eventually acquire full remission (two months of pain-free, normal blood ranges, and no signs of muscle weakness/pain).
Going through my first bout with DM was one of the hardest things I had to experience, not to mention the trauma that had occurred just before my diagnosis. And if you are also being challenged by myositis or any other rare disease, then I don’t have to tell you about the frustrations, anger, grief, sorrow and all of the other emotions that come along with it. We are not only trying to adapt to our new physical environments, but we are also having to process the emotional and mental capacities in which we need to thrive. This is NOT easy.
As I mentioned in the beginning, I was in a very bad place in my life in regards to my beliefs and values. I grew up thinking, and living by, other people’s standards and beliefs, and I never listened to my intuition (for the most part). I thought that I had to be aggressive in life to get what I want and it didn’t matter if I had to be mean or hold grudges along the way. I was stuck in blame, judgment and, well, you get the idea. I was allowing my ego to lead the way causing me so much disappointment and hurt. I was a hot mess!
I’ve learned SO much since then and I’m grateful for all of the lessons that surfaced through all of the hard. I learned the power of self awareness and how shifting my thought patterns and re-evaluating my beliefs and values can truly bring me more peace and balance. I learned how to cultivate more patience and compassion not only for others but for myself and I did this through mindfulness practice.
I became a firm believer in mind over body and began a new adventure in holistic and alternative care, which led me into receiving my holistic health practitioner license. I wanted to help others get through the mental anguish of rare disease and through ANY life adversity. We, as patients and rare disease warriors, can easily get stuck in places that jeopardize our healing journeys. We ALL want to feel better, if not yet in our physical beings at least where our mental health is concerned (notice I said, ‘yet’!)
So with this, I want you to know that your journey is one of a kind, your story and voice matter, your pain is real and you are not alone. And as I’ve come out of remission after 20 years, in which I am so grateful for that time, I am now in a better place within my heart to accept what is and give my body the attention, love and patience it needs to thrive once again. This, my friend, is there for you too. It is all there waiting for you to recognize so that you can start to invite in more patience, peace and love into your new life.
Most importantly, find the people who are there to support you, who truly understand what you’re going through and are always there to cheer you on with every step forward (or not). Create your rare disease family and make the friends you need to heal.
And yes, you ‘do’ have the courage and strength to get it done! Even at your lowest when you don’t think you have any control… you do! You just have to believe in it and most importantly, believe in yourself. Dig down deep and find it.
With healing love,