Stronger than you think!

I was formally diagnosed with neuromyelitis optica in 2013, only weeks after delivering my youngest daughter. NMO is an auto immune disease in which my immune system cells and auto bodies attack my optic nerves and spinal cord. The swelling and inflammation of my optic nerve has caused pain and loss of vision in my left eye. The damage to my spinal cord has caused paralysis in one leg, general whole body weakness, fatigue, bladder control problems and bowl function issues. NMO is a relapsing disease. Every person with NMO varies as to when the need to go to the hospital. Currently, I am admitted to the hospital every two months. Treatments are no longer effective. My treating neurologist decided two weeks ago that I will no longer be his patient, as he has run out of medications to try. This disease is viscious, and although the drugs I receive for the inflammation are FDA approved, they are not FDA approved for my condition. Therefore, my insurance is not covering any of my treatment. My husband and I have incurred over $900,000 in medical bills in the last year and a half! The is no cure for this disease! It is said to be ten times worse than someone that has MS. It is an incredibly painful autoimmune disease. I long to find some answers and give my children the best life possible. When I am having a terrible day, I say to my kids, "why don't you get coloring books and bring them over here so we can color (I don't like them knowing when I am not feeling well)," I loathe saying I don't feel good or mommy is in pain. It is common to have several different autoimmune diseases at once. I have also been diagnosed with Hashimotos disease (a thyroid disease and Addison's disease (an adrenal insufficiency). My body is attacking itself! On October 26th, I want to attend an NMO CIRCLES-patient day. I would have to travel from CA to NY. The conference will include researchers, scientists, and two doctors that will hopefully provide some answers. If nothing else, I will be able to receive support from people who know exactly what I am dealing with! As I know tomes are tough for a lot of people, if you can not donate, please share this with everyone you know! Thank you all for listening g to my story and helping me fight this nasty battle! (I've had a lot of reservations about creating a go find me, but I am desperate at this point!) thank you all, xoxo Mandy