I am attempting to post this from my cell phone, which considering my struggles with Fine Motor Skills, this will be a victory in itself if completed. This will be as brief as possible, but I couldn't allow this moment to pass without celebrating.
Five years ago I was diagnosed with Hashimoto's Encephalopathy. For those who are new to this journey with us, it essentially means that my immune system is causing inflammation in my brain. This initially was diagnosed when I developed Parkinson's type convulsions followed by stroke-like symptoms. I had initial success with treatment, but quickly developed complications. At that time, I was informed that there were only a couple dozen accepted diagnoses in the US...ever. I was told by my amazing team of doctors that no one could tell me what to expect past two years. Most of the known cases had died from suffering massive strokes or comas due to this disease. A few of the others had died from complications of treatment. My biggest fears were not being there for my children who were 8 and 10 years old at the time. I was diagnosed and hospitalized on my son's birthday and spent my daughter's birthday at the Mayo Clinic. I started this blog to keep everyone updated while at the Mayo Clinic, but found myself flooded with love and support. Tears are rolling down my face right now as I remember reading the messages from friends, family, and strangers.
Here is my update: Five years ago, I was diagnosed, in shock, devastated, and scared, but I took one day at a time. I rebelled a little and found myself writing my children letters for the events in their lives I would miss.
Four years ago, I had to stop working. I had to accept that my illness was debilitating to the point that I could not do my job as it should be done. Long over due, I passed the reigns to sweet Laurie Wilson who continues to amaze me! I had to start resting often during the day and took a cocktail of medications that treated and made me sick at the same time. I struggled with my identity and purpose and mourned the person I used to be.
Three years ago, I celebrated because I had reached the two year mark after diagnosis, but my medication was no longer suppressing my symptoms. I gradually quit taking my immune suppressants and my encephalopathy began to rage. I had lost hope and began to accept defeat. My doctors did not. They came up with a new treatment plan and I slowly began to recover.
Two years ago, I was stronger and even tried to work again. I limited my hours but it still was ultimately too much. When my health declined, I finally accepted that working was not in my future. I had to limit my stress, activity, and with bone marrow function at almost zero, I had to limit my exposure.
Last year, I gave up the guilt of what my illness had done to my family and celebrated the fact that I was still in their lives. I celebrate the support group of other surviving HE patients I have joined from around the world. I have been blessed to be contacted by dozens of other patients or loved ones of patients through this blog. I have been able to answer questions and give advice. Mostly, I try to give them hope!
It has been five years this week that I was diagnosed. My son turns 13 in a couple of days and I celebrate the precious man he is becoming. My daughter turns 15 next month and I'm celebrating the fact that she has asked to go hiking and star gazing with her tonight...and that I expect to be able to do it. I may not be as strong physically now, but I am inside. My life may not be how I planned, but it is full. Mostly, I am blessed to have so many amazing people in my life. I cannot thank all of you enough!
