My name is Samantha & I live in Orange County, California. I have been chronically ill for the past 4 years and my passion is to talk about my experiences and journey in order to help other people with theirs. I have 2 genetic mutations, 5 autoimmune diseases, and a plethora of other health problems that prevent me from living a normal life. My diagnoses are: Systemic Lupus Erythematosus (SLE), Antiphospholipid Syndrome, Hashimoto’s, Interstitial Cystitis, CTLA4 genetic mutation, f12 genetic mutation, Raynaud’s, chronic UTI’s & pyelonephritis, PCOS, and Iron Deficient Anemia. Since a lot of these aren’t very common, I hope to provide insight into what life looks like living with these debilitating diseases and the symptoms that come with them.
I am in a program at my hospital called the Extensivist Program. It is for patients with rare and complex medical conditions who are hospitalized frequently. It is to decrease hospitalizations, do same day appointments, and have a specialized treatment plan including specific specialist referrals. It has absolutely changed my life and I am so blessed to be in this program! I have 10 specialists that all work together to coordinate my care plan. I also get care at the Mayo Clinic.
I am on multiple treatments ranging from shots, pills, diets, physical therapy, East/West medicine….the list goes on and on. Recently, they found an overall connective tissue disease diagnosis for me and are starting treatment for it. It was what we thought from the beginning: Lupus (SLE). This terrible disease has run a muck in my body and it is finally time to put the fire out so I can get back to living my life! Currently, I am stuck living homebound and even bed-bound most days. My symptoms vary in type and severity constantly and it’s exhausting managing so many difficult symptoms and side effects. This is going to be a huge journey with Lupus, but I am ready to conquer it and take you guys along with me!
I don’t know what brought you to my blog, but I hope you find encouragement, knowledge, and hope.