Hello Fellow AS Survivors,
I noticed that the other groups on this website have a daily chat where they have become friends. By sharing their pain and personal experiences they seem to use humor and companionship as a form of coping. We may be able to help eachother by sharing our stories.
Would any of you like to have a daily chat to share our experiences together?
For example, I'll start: The onset of my symptoms began in 1996 in my sacroiliac joints. The pain shot through my hips like bolts of lightning so bad that there were moments that I couldn't walk. The next phase of my Ankylosing Spondylitis was low back pain that spread up my spine to concentrate in an ever present knot between my shoulder blades. It sort of felt like I was having a heart attack. Once I went through enough tests to find out that I wasn't dying, I settled into a routine of taking lots of Ibuprofen to reduce the pain. That was until I started having trouble expanding my ribs enough to breath. Hmm? Breathing is sort of an essential part of life. That problem spurred me out of denile and into action. What was this weird thing happening to my body?
Plus, during this time I was blessed with a daughter in July of 1999 and then again in October of 2000. Needless to say, being pregnant and raising children diverted my attention off my spine and into the rest of my body and the precious lives of my girls. That period of time was when a Rheumatologist confirmed my diagnosis of AS. It took an HLAB27 blood test and other strong information to convince me that I really did have an autoimmune disease.
That was when they wanted to pump me with something made of rat DNA (Remicade was brand new then) and I freaked out!!! See ya Dr. Rheumy. . . I was out of there for years.
Now that I am trying to keep up with a covey of three girls that are 7, 8, and 9 years old (we adopted my niece), romancing my amazing husband and helping him run our home based contractor's business, while maintaining a household, the pain in my entire body has become unbearable.
My current AS symptoms are that it is impossible to catch a deep breath because I can't expand my ribs without having electric shocks running through my spinal cord, chest, and rib cage. Just sneezing or coughing feel like near death experiences. I wake up in the night with spasms in my back. Inflammation can be felt everywhere from my fingers to my toes and even where my ears connect to my skull. I also had my first case if Iritis, so the inflammation has gone into my eye and it felt like the pressure was going to shoot my eyeball right out of my head. At least the Pred Forte eye drops took care of that and I no longer feel like there is an unbrella shadowing the left side of my vision. Thank God!
In order to keep up with our busy lives, which definitely requires being able to drag myself out of bed in the morning, I have FINALLY decided to seek effective medication. So what if it comes from a Chinese hamster ovary. (?) That sounds like a weird science fiction flick to me! I'm starting Enbrel today.
After six weekly doses of eight 2.5 mg tablets of Methotrexate and daily taking 1 mg of Folic Acid to protect my liver, and 1600 mg of Ibuprofen to kill the pain and reduce the inflammation, I can function but the ever present knot is still persisitently aching. Plus, the stiffness in my neck and entire back leaves me feeling like a Jack-In-The-Box ATTENNA BALL. I'm tired of not being able to properly move, bend, and turn my head. It hurts! I already backed my Suburban up into A parked PT Cruiser because I couldn't turn around enough to see the silly little cartoon car behind me. Oops! That was a $700 cha-ching!
Anyway, ENOUGH ABOUT ME! I never intended my first chat to be so long. Sorry. I really need to hear from others who have similar symptoms and coping stories. My sincere hope is that we can learn to heal ourselves of this miserable disease. Why us anyway? Why does anybody have to suffer so much pain? Daily I thank God for my health and pray that those suffering even more than me will be healed. But at the same time I ask Him, "Why?" Hopefully together we can figure it out.
I'd like to close in prayer. . . Dear God, thank you for this glorious day. Please continue to protect our loved ones and fill us with your grace. Your all mighty power can comfort our pain and we can be healed. Please shine your light on us Lord and help us to see how. In the Holy name of your son, Jesus Christ, I pray that you will hear these words and work in the lives of all those who read this prayer. Amen. Please make it so, Lord!!!
Looking forward to hearing from all of you fellow SURVIVORS!!!
Edited by Kimberly
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It makes me sad to think of such a young man suffering through this kind of pain. Hang tough man! With prayers and science put together there may be a cure for this within your life time.
Isn't it frustrating that the doctors aren't more aware of the onset symptoms of Ankylosing Spondylitis. You can't really blame them though because there is such a vast difference of symptoms in each patient and the symptoms change so quickly. I remember wondering what was going to happen next, and I still do? I wonder how we will ever know if we are sick of something other than AS. How does someone with chronic pain discern if the pain is caused by their arthritis or some other more serious condition? That question is a bit scary.
Shawn, I'm looking forward to chatting with you on a regular basis so that we can learn from each other's experiences. Does your mom have time to share her story. I would love to speak to another mother with these same concerns. My heart aches to think of her trying to comfort you. You are a kind boy to also think of your mother's pain. I read a previous posting of yours that made me cry. In an odd way, I was proud of you even without knowing you. You are tough and capable of fighting this wicked condition. Stay strong.
