Welcome to my blog! My name is Kelly and I am a 54 yr old wife, mother of four and grandmother of 6 (so far!)
A few years ago I was diagnosed with Small Fiber Neuropathy, and the doctor’s had no idea how I developed this but said it was most likely caused by something as yet undiagnosed. Now, several years later, I have been diagnosed with a lovely array of conditions. I have multiple autoimmune conditions including my 2 “biggies” – Sjogren’s and Rheumatoid arthritis. **edited to add another (and probably original)condition Hyper Mobile Ehlers Danlos Syndrome diagnosed February 2024** My immune system however was not content with being over active and attacking itself…it is also underactive and not attacking ‘invaders’ efficiently or creating antibodies correctly due to my having Common Variable Immunodeficiency. I also have been diagnosed with Dysautonomia, Small fiber neuropathy, Raynauds, Erythromelalgia and SIBO.
So why blog about having chronic illness? Well, for one thing, it has become a large part of my life. For another, I wanted to share my experience so others will know they are not alone. I am a rabid learner and so I have immersed myself in research…reading and watching anything I can get my hands on, so why not share the things I am learning? Giving and receiving support, understanding, information, ideas, etc. is good for all of us.
When you live with Chronic illness/pain, what you experience one day might be totally different from the next, due to fluctuating and unpredictable symptoms, constant pain and fatigue and all that life requires of you on any given day. Managing it all requires you to be (or to become) adaptable and to learn to accept change and limits. Knowing that your life is permanently changed is huge. Knowing everyday will be different and sometimes you will have to face that you just CANNOT do ‘that’ today. To forgive yourself, to ask for and accept help, and to advocate for yourself are often difficult things to do when you are used to being independent. So this blog will be all of these things, plus a way for me to document this crazy journey!
