On November 14, 2019, I went to the hospital for dizziness. I had been traveling for work for over five weeks, so I was diagnosed with vertigo and discharged. I started doing vertigo relief exercises and visiting an acupuncturist twice a week. On the 17th of November, my husband drove me to the acupuncturist as my symptoms had worsened. Later, as we left, he had to carry me as I could no longer walk, and my speech was severely slurred. Thankfully, he took me to the hospital again and I was admitted.
Here is where my journey of diagnosis and healing began.
By the 19th of November, I had three MRI scans. My neurologist could not find what was making me ill from the results of the MRIs and bloodwork. Bu now, my symptoms had worsened, and I could not walk, talk, or see, nor could I keep food down. On the 20th of November, my Infectious Disease (ID) physician insisted on a Lumbar Puncture (LP) to find answers. She also started me on Immunoglobin Therapy (IVIG), along with antibiotics.
My husband, daughters, and sisters sat with me around the clock to assist me with my basic needs. I needed help walking, eating, using the restroom, and eventually showering. I was poked and prodded for blood work daily and I also had six more MRI scans. By the end of the month, the results from the LP and the MRI scans finally gave a diagnosis of viral meningitis which had caused viral encephalitis that settled in the mid-brain and brain stem. They also discovered that I had Lyme disease.
The viruses debilitated me, and the Lyme disease slowed my ability to recover. When Thanksgiving came around that year, I had a ton to be thankful for. My diagnosis, friends, family, medical staff, and my faith had all carried me. My family enjoyed Thanksgiving dinner from my hospital room, and I attempted to eat and keep it down, but to no avail. A few days later, I had a double lumen PICC line put in my chest and was moved to a local rehab center. This meant that I could receive constant occupational, physical, and speech therapy.
On my first full day of rehab, they were able to get me to use a walker for around 17 feet. This was the start of a three-week journey where I re-learned how to do simple tasks such as brushing my teeth, using the restroom, and showering. Keeping food down was still a challenge.
On the 20th of December, I was given the best early Christmas present – I got to come home! I was still using a wheelchair while I built up strength with a walker. My husband cared for me looking after my basic needs and I still had a physical therapist come to my home to work with me.
I was mainly under the care of my ID physician and continued my treatment for the Lyme disease. My speech had almost completely improved, and I had stopped using my wheelchair and walker (graduating to a cane) by May. I was very unsteady but determined to become independent. I also started attempting to drive to close-by spots, including doc appointments. I was still doing physiotherapy and aquatic therapy until September. Not because I was great, but because I had all the tools to continue improving on my own. I also returned to work full-time.
Fast forward two years, I was COVID-positive and started losing motor skills. I had the monoclonal anti-body infusion and started back with physiotherapy. What I realized is physiotherapy continued to work on my strength. That is one item I never lost. I lost the ability to do tasks. My brain could not tell my body what to do. So, I stopped physiotherapy and joined a gym, which has been phenomenal! If I cannot figure out an exercise, they give me modifications until I can figure them out.
I feel that I am closer to being myself and I am recognizing that I have a new normal. I am so blessed to be here! No one really knows what is going on in my brain as this is not a typical journey.
I wish I knew a “me” when this all started so they could have given me advice. I do have a new brain with an ABI now. I have taken all paths with medicine and have a healthy blend of Western and Eastern medicine.
Since my initial recovery, it has come back twice, reminding me that I have a sensitive brain. We must all give our brains grace.
Sleep is my friend and if I need to stop for a second, I do. My mental health is so important, and I listen to my head, my heart, and my body. My faith in God has given me the strength to move on. He has provided in all ways for my healing. My family and friends are my cheerleaders and mean the world to me. I cannot thank them enough!