I was diagnosed 18 yrs ago as a senior in high school. At the time, I had my pediatric Rheumatologist, a nurse practitioner, and my parents to advocate for me and manage my health care. A few months later, I headed off 1,000 miles away to college. I had to quickly learn how to deal with a chronic illness, change to adult Rheumatology, manage health care, manage my college classes, my finances, and be my own advocate. I didn't always manage all of this so well, but I got better with time. More adjustments came four years later when I graduated, married, entered the workforce, and started a family.
I hate asking for help and am typically a stubborn person. Asking for help became necessary when my chubby two year old could outrun my swollen joints. She probably rode in a stroller longer than most children just to keep her contained and safe. I remember a time when I was not getting my point across very well to my doctor. Keeping a journal of the things I could not do along with short and long term goals really helped. The next doctor's appointment, I took this list in to him. I think it gave him a better picture of my home life when I told him I could not get down on the floor to play with my daughter and get both of us back up again. Building that patient-doctor relationship is so important especially when dealing with a chronic illness.
Having a chronic illness does not mean that you can't achieve your goals and do the things you want to do. Rheumatoid has affected the way I do things. However, I still stay busy trekking my kids from point A to point B, keep a relatively clean house, volunteer at school and in my community, and spent 7 1/2 weeks in Kazakhstan bringing my son home by myself. I like to say that Rheumatoid has not affect my life or my family's life, but it has. I can say that it has not consumed my life.