kelly-miller
Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?
Serenats Member
Love this
CommunityMemberf4e08b Member
I was recently diagnosed with Addison's Disease and CIDP (Chronic Inflammatory Demyelinating Polyneuritis) I also started having seizures at 58 years of age. I have had to make a lot of changes due to CIDP. I can't turn my head and look behind me. I have to stop, turn around and then look. My balance is awful. I have torn apart my skin in several places and broken my ankle. I believe the Addison's causes excessive bruising which has been a problem with me for years. I just try and notice when I get a bruise or cut. I have had cellulitis twice this year and never before. I'm 69 years old. I have other diagnoses, like insomnia (used to have Narcolepsy) . I try to be as stresss free as possible. I take breaks when I am cleaning or putting things away, which I have never done before. I see an endocrinologist next week and plan to ask a lot of questions.
Donna.Flood-Amaya Community Admin
Hi
CommunityMember06aaf5 Member
CommunityMemberb3de94 Member
I try to stay positive, and do things that keep me moving. Volunteering is a good way to focus on something that I can do to help others, even if I can no longer do as much physically as I used to.
Donna.Flood-Amaya Community Admin
corene-pettit Community Admin
Thanks for sharing with us,
Warmly, Corene (team member)
p.s. It looks like you have one of our automatically generated usernames. If you would like to change it to something more personal, you can do so by clicking the icon in the top upper right corner of the page and choosing "Account Settings" to change your profile.