My name is Toni Clark. I was born in 1959 and live in the United States. Most people that I have encountered (even some doctors) have never even heard of Stills. I am extremely lucky to have the support of my family and friends but this is something that you have to experience to completely understand. The wondering, concerns, overall systems, worry, and horrifying feelings.
My onset was in May of 2009 and my diagnoses was in June of the same year. After having a terrible cough (mostly at night) I went to see my primary doctor. She would put me on an antibiotic during the course of three visits and after each round was finished all of my symtoms (somewhat flu-like but worse) would return. Finally, after several rounds of antibiotic treatments she recommended that I go to the hospital ASAP. I went the next day and was in the hospital for almost the whole month of June. I have not had a remission since diagnoses. My current medications are: Humira, Prednisone (20 mgs) per day, Morphine Sulfur (60mgs) per day, Oxycodone, Celexa, Ambien, Folic Acid, Latanoprost Eye Drops, Restasis, Simvastatin, Clonazepam, Lidoderm Patch for pain as needed, Numoisyn Lozenges (as needed for dry mouth), and Omeprazole.
I worked for a government contractor for a little over 20 years (that’s how I met my husband), but have been on disability for almost a year now. Even though this has not been easy on any of us I have been lucky to have a very supportive family. My favorite hobby was going to rock concerts (that doesn’t happen anymore) but my husband and daughter can still go which makes me happy and sad at the same time. I’m sure that many of you can relate..I also loved walking, I would walk about 5-7 miles everyday with my daughter.I have a pretty severe case of Still’s which limits my mobility. I’m only good for 20 to 30 minutes before I have to lay down and rest mainly due to pain and fatigue.
Living with this rare disease leaves me desperate and excited at the same time to meet others who are or who have gone through the experiences that I encounter throughout my daily life and that is why I have joined the Still’s disease support group.
Written April of 2012