About 1 year ago my boyfriend and I were enjoying our lives together, with friends and family, traveling and just quite happy. In a very short amount of time, all of that changed when he became very ill and continued to decline as we were trying to determine what was wrong with him. He was working full time as an IT professional for a very well known company and I was a marketing manager for an IT company as well.
What started as flu like symptoms then turned to the inability to walk, speak, or remember anything (including some people). I took him to multiple hospitals and he had multiple stays, with every test coming back as “within normal limits” yet he kept getting worse daily. Each exam and medical professional was scratching their head and unsure of the next steps. One physician actually suggested that they would like to place him in subacute rehab with no true diagnoses. So what exactly would he be rehabbing? In hindsight he would have died there in a short amount of time.
So it was at this time, and through discussions with family and friends, that we decided to take him to a more specialized hospital in the city. We were fortunate to live just an hour from the University of Penn hospital. We drove down there at 10pm on a Sunday evening and waited all night to be seen. They placed a mask on him and placed him in a wheelchair, which terrified him…and, truth be told, scared me too.
He was finally diagnosed with Autoimmune Encephalitis and being seen by the top neuroscientists in this area, the very doctors who discovered this disease were now going to be treating him. What are the odds? We were so very fortunate.
Since that time, our lives have been filled with neurologists, oncologists, pulmonary specialists, physical therapy and occupational therapy as well as biweekly infusions and steroid treatments. John has since learned to walk again, and write again, and still works daily on his memory with very strong cues and reminders. He has improved tremendously but still has a very long road ahead. There is no cure for this disease but our goal is to find remission
I have since left my job in corporate and trained to be a certified health and wellness coach. I initially was taking classes specifically to help our situation and live the healthiest lifestyle we could as he recovers. I am a caregiver first and a health coach second. I have recently started working with clients to assist them in their health struggles as well, from dietary issues to diabetes. It is a most rewarding change and I am so blessed that through this difficult turn of events, we have found such beauty and purpose.
All things considered 2017 wasn’t so bad and I know that 2018 will be SO much better.
Thanks so much,