Asia
CH.com Newbie
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The only constant in the world is change.- I. Arie
Posts: 10
x0|Sugar Land|USA||0|0|TX,Texas
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So I'm not alone. Wow. Sorry this will be long, but please read!
I'm Asia, 33, I have a 17 year old son in college...
I've had CH since I was about 12. Mother and family thought I was "being dramatic" until later years when they got worse (my mother once asked if I had been using drugs when I was rushed to the ER). I didn't see a neurologist until I was in my 20's, formally diagnosed only about 5 years ago.
I have never had "consistent" insurance, except for Medicaid when my son was born, but I was so young, I didn't know how to go about seeing the right doctors. I almost wish I could have the space and your attention span to tell you about some of the things I've gone through, just to get them off my chest, but I won't.
I usually get them about 1-3 months out of the year, not always the same months. In each episode, it's on one side only, but can change sides on a "new" episode. After reading many posts here, for the first time I hear people saying that they're going through the same symptoms...even though doctors and my own research painted the CH picture, I've never met anyone with them. NOTE: The only thing I've still never heard being the same is that on the side of my HA, that arm and leg becomes sensitive to pressure sometimes, and it hurts to use them at the worst of the HA.
I'm in the longest cycle I've ever been in (4 months). I still don't have insurance, and even to get it now would make it a pre-existing condition. Trying to apply for Medicaid, but I just found out it will take a month (had it in New Orleans where I am from, but that does me no good here.)
I just practically begged an ER doc yesterday to give me Prednisone and painkillers, while I continue to try to get regular doc care. I am getting too close to feeling like there's no hope that they will end, even though my mind tells me they will.
I've been in restaurant mgmt for years...finally reaching the conclusion after many lost jobs and getting THIS broke that I can't do that work anymore. I don't leave the house, don't see friends, don't do anything but wait for the next headache. I have plans to finally try to start my own business...so that if I do have to live with this, at least I won't have to tell ME that I have to quit. I'm a poet and spoken word artist, with a self published book...when I'm not in the 'Ville, I perform a lot and do community work.
I know it's time for my life to change, do things differently, and I'm glad to have found this site. Thank you so much for sharing your lives...you just might be saving mine.
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