Updated: 6 days ago
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How I stopped chasing a cure and started chasing my new normal
By Lisa Conroy
My name is Lisa and I have been chronically ill with multiple conditions for 3 years. My heart is currently “failing” and I am in the process of being re- diagnosed in the middle of a pandemic. This process I would equate to an epic adventure one similar to Lord of the Rings.
Hi, I am Lisa, and I suffer from multiple chronic illnesses and I recently began identifying myself as disabled and a professional spoonie. If asked to add these to my medical resume I would list these in the qualifications section. I find it interesting that chronic illnesses always come with plus ones not invited to the party? As of this morning, I have been diagnosed with Chronic Pain (herniated cervical disks), Functional Neurological Disorder / Movement Disorder, Mast Cell Syndrome, Sinus Tachycardia, and I’m currently in the process of testing for POTS or other cardiology issues. My heart is "failing" and being potentially stressed by something else or another system.
In early 2017 I started getting random allergic reactions to food or products I had been using for years. I could eat a banana today, and tomorrow my body could decide it was an allergen. Slowly more symptoms began to present themselves, progressing over the year. Eventually, the allergic reactions became bad enough to lead to my first intubation for four days and a week in the hospital. We believe, looking back, this was the first sign of my Mast Cell Activation Syndrome.
After the intubation from an allergic reaction, various other symptoms ramped up. We noticed I would lose feeling in my legs and get tremors in my hands, and one day in my mother-in-law's kitchen, I fell off a chair, hit the floor and had my first seizure. This was the beginning of my many episodes and the long road of diagnosis. We went through all the neurological tests, brain scans, anything my insurance would approve we did. Eventually, It was suggested that I had a Functional Neurological Disorder, and my symptoms present themselves with seizures, blackouts, ticks, and tremors. Having so many seizures, I hit my head enough times to have to wear a helmet for two months. One time I even got a concussion and cracked my acromion joint on my left shoulder six weeks after I had labrum repair on it from a college injury. I also kept reacting to any standard medication for treatment, and none of the specialists could figure out why. I was then referred to a neuro-psychiatrist who explained what was going on in my brain. Essentially, they explained that my brain was sending the wrong signals to my body, the ones that signal that we are in distress. For me, my body would respond with pain radiating throughout my body, muscle weakness, temporary paralysis in my legs, and sensory overload.
My case was/has/is complicated, so we were referred to the Mayo Clinic in Minnesota. I spent 10 days in different departments getting tested by multiple specialists to confirm my suspected diagnosis. They confirmed my initial diagnosis, adding a few as well (anxiety, depression). I had a diagnosis and treatment plan from THE Mayo Clinic. I felt like I had won some kind of medal for that experience. I had lost so much in that year. My job, my independence. The ability to control of my own body. So when I got home, I threw everything I had into getting my old life back. I took every medication that was suggested, I started therapy to better understand my diagnosis. I powered through sleepless nights of pain and still woke up to go to the gym and work almost every day.
Resilience and determination are two of the many traits that I am proud of in myself. Unfortunately, they are also problematic for some one with ADHD. I do not know when it's time to take a break and rest. I was raised to believe strength is measured on a whether you keep going no matter the circumstance. Chronic illness humbled that thought and belief in so many ways. I learned that there are many definitions of strength. There is strength in saying my body cannot do this; I need help. I pushed my physical body and my mental health to a point my heart said “NO MORE. STOP!”
With all the specialists I had and medications I was on, plus pushing my body, it was just too much. On New Year's Eve 2020, I had an allergic reaction due to medication interaction that made epinephrine ineffective. This was my second Intubation in 5 months during a global pandemic. I was on the same ventilator system COVID patients were not waking up from. I remember being semi-conscious when the doctor asked my husband to leave the room, and I internally told him I loved him and goodbye. I may have tried to wave, but they had my hands held down.
When I woke up on the 2nd of January 2021. I left the hospital and realized what happened, and I had a breakdown. I wandered around our home, trying to process the trauma and everything we had gone through over the years. After many conversations with my care team and husband, I decided to be more involved in my own care, specifically medications prescribed to me. I wanted the chance to do my own research and discuss the risks with my immunologist. When people ask me about trying different treatments lately, I am done chasing a cure. I am chasing happiness and normalcy in my life with the conditions I have.
And the first step was I wanted to get re diagnosed with a different care team—a care team of doctors that would work with me and listen to my symptoms and concerns. The road to diagnosis is not easy. There are many roadblocks from insurance or your own body being so exhausted you can barely make it out of bed to make it to an appointment, especially during this pandemic. This entire process has taught me to be resilient, patient, and advocate for myself. Especially as a woman, and more so as a woman of color. I am aware of the disparities in the care we receive.
So I am determined to fight with the insurance company to process claims. I will be resilient in the fight to find the normalcy of what my body is asking of me and accept the new diagnosis missed the first time. I will continue to process the trauma that came with being misdiagnosed and given drugs that kept me sick and a drug interaction that almost killed me.
So, my advice for anyone going through the journey of being diagnosed? Interview your doctor, do your research, make sure they are willing to take your suggestions into account. You know your body better than anyone else. Finally, treatment is not a one size fits all, we may have the same diagnosis, but that does not mean our treatments will be the same.
In conclusion, I would like to share with my fellow spoonies that not having a diagnosis does not invalidate your pain, and having a diagnosis does not make your pain any less. Half the time, some doctors have no clue what you have and use Google. * I had an ICU doctor Google Functional Neurological Disorder when she was admitting me*. Figure out or find what your normal is. Find joy in the little things that you can remember during a flare-up. You are not alone. You do not have to suffer in silence because you are STRONG. There is more power and strength in admitting you are hurting and you need help.
Full post reading by Jenni Pettican