Monday, October 12, 2009

Intracranial Hypertension/Psuedotumor Cerebri

Sounds fun right! Yeah not so much. For the last two years I've been experiencing excruciating headaches, tinnitus (buzzing/whooshing) in my right ear) dizzyness, blurred vision, blackouts, double vision, pins/needle tingling in my hands and feet and sheer extraordinary exhaustion. Finally after 2 years they send me to a neurologist who does an MRI, blood tests, sends me to an opthamologist and a lumbar puncture. Low and behold three weeks later we have a diagnosis. My LP opening pressure was 29 normal pressure should be around 13. They removed 20 cc's of spinal liquid off my spine. They said that should help. Yeah it hasn't. They put me on topamax. A month later still dealing with the same symptoms and fighting to maintain some control in my life because my vision is getting worse. The pain is getting worse and what's worse because I don't LOOK sick, people think I'm perfectly fine. No I don't want to be treated differently because I'm sick but at the same time I want UNDERSTANDING. Especially from my husband. And I'm just not getting it. Last night Jaxon got a fever that shot up to 103 and I called the doctor. They said we can see you at midnight if you want and I said do you think I need to bring him in. They said we will have the MA call you back. Ok no problem. She calls back and she says if his fever goes down with tylenol/motrin we can wait till morning to bring him in. I'm at this point exhausted and think waiting is the best option and Ian has decided that I need to take him in. That he absolutely needs to go into the doc at midnight but He wasn't volunteering to take him. He wanted ME to take him. So I rescheduled the appointment and Ian freaked out on me. You are lazy only thinking of yourself. All you want to do is go to bed when your kid is sick... This is the type of thing I have been getting from him since I got the diagnosis and it doesn't matter what it is about. Checking the voicemail, cleaning the house, or whatever and this is what I get. I just feel so worthless and not even sure what to do. Jaxon slept all night last night and woke up with the fever again this morning and we did go into the doctor. He has an ear infection. He is currently sleeping again. And I have yet to get a kind word from my husband or anyone else today. Ok my vent is over. The point of this blog post is that I joined an IIH support forum and they had a link to www.butyoudon'tlooksick.com and this lady wrote this story about the spoon theory. She was trying to help her friend understand what it was like to live with Lupus everyday. Now I don't have Lupus but the principal is the same. And I hope that it will help some understand just a little what it's like to live with a disease that takes all your spoons. Read it and then write me what you think about it! I'd love to hear what you think. Because the disease is different but the point is we don't look sick but we are. ;)

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