I was diagnosed with IH almost two years ago. Currently I'm struggling with the facts of my condition and the possibility that a surgery is in my near future either a VP or LP shunt. It turns out that I have a severe sulfa allergy that prevents me from taking Diamox, Lasix, topamax etc. These drugs are normally used to treat IH. Surgery looks to be the only option left. I'm currently working with several neurologists who will help me determine if having a shunt installed is the right option.
My life has completely changed due to this illness and honestly I feel quite lost most of the time now. Some of my dreams have been deferred indefinitely until I can get a clear understanding of how i am going to live my life now with a chronic illness. My goals are rapidly changing now and I need an outlet to voice my concerns, fears, sadness, and anxiety. So hopefully you will follow me on my journey into the unknown and give me some advice.
I wanted to start this blog because this illness gets so little attention. My fellow sufferers out there know what I'm talking about. If you come across this blog and wanna know more about IH. Please go to this website:
http://www.ihrfoundation.org/
I have learned so much about my illness from this foundation and if you have just been diagnosed this is a great resource. I am also a member of an online support group at dailystrength.org.
My life has completely changed due to this illness and honestly I feel quite lost most of the time now. Some of my dreams have been deferred indefinitely until I can get a clear understanding of how i am going to live my life now with a chronic illness. My goals are rapidly changing now and I need an outlet to voice my concerns, fears, sadness, and anxiety. So hopefully you will follow me on my journey into the unknown and give me some advice.
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