I want to thank you for your AS site it is so wonderful to know I am not alone. It is a very empty world when you don’t know others with this disease. I was finally “heard and diagnosed in March of 2012. YAY!! It was such a relief to know I’m not crazy or lazy. I think getting excited and happy to have it named threw my family for a loop. They must have thought I was not grasping the reality of it. I was in shock as well so I felt a bit numb for a few days. I had been told a lot of different things during my 12 years of pain, exhaustion, fever, chills, infections and depression; previous wrecks caused arthritis so you need to exercise, osteoarthritis, rheumatoid arthritis, systemic lupus, calcification of the kidneys, your bad teeth are causing infection so that will fix half of your problems and of course the famous one…your tests are all negative….we just don’t know. That one was just a way to get rid of me because I had no insurance. I also have cysts that are popping up dangerously close to my lymphatic system and on my spine so now cancer (myeloma) is on the watch list. Oh and now that I have an awesome doctor who wants all of my issues dealt with, my insurance company says nope…pre-existing condition clause…have to wait a year and every appt. is heavily scrutinized for anything even remotely related to my disease. Somehow I wonder if they are even going to cover me after the one year. I also have Arrythmias…yippee! The emotional side is too complicated to even explain to others without this. I had things to do around the house that took the pressure off of the ones who work and gave me meaning and fulfillment. Now to have to sit back and watch all of them do my chores on top of their jobs and responsibilities makes me feel so worthless and vulnerable. I finally realized that acting tough and forging through my chores was taking me down. Not being able to play with the grandkids like I did with my children breaks my heart. Having to say no to invites and trips is hard but it is not worth the cost my body will pay. Having been a stay at home mother I’m finally free enough to have a part time job but alas no job skills nor physical stamina to work anywhere. The lost intimacy with my husband is immeasurable and devastating. He is afraid to hurt me and now I know thanks to one of your stories why intercourse hurts. I thought it was all in my head. It is not easy for the ones who love us. He says he feels like a creep when it hurts me. Getting in the shower is work most days and if I could have a place to feel the hot water engulfing my sore body endlessly I would never leave it. God is my saving grace and having folks to share and vent to is a treasure. Knowledge is power and support is precious. I am considering starting a support group here in Utah as there isn’t one. I see so many sufferers as I waddle around through stores or reataurants. We could call it the Penguin Club.
Prayers and hugs of hope to all of us and thank you so much for sharing and caring Cookie.
God bless you, JoDeane
Utah United States of America