Thursday, December 11, 2008
If you saw me walk without my cane, you’d swear I’m drunk. I stumble, trip; my weight will randomly shift from underneath me; I mis-step; I fall. I’m totally sober, I’m just getting weaker.
I had some minor seizures the other morning. I had 3 or 4 uncontrolled head movements yesterday. My back pain is getting worse. I have almost no range of motion in my neck or back. I’m getting worse. I’m freaking getting worse.
And yet, I can’t get any results, answers, or information. None. Why? Because they don’t have the MS blood results yet. They won’t tell me if they see Lyme in my spinal fluid. Or Babesia, or anything else. They won’t explain the MRI results. Nothing. Not until they get those damn MS results back.
Why?! My brain CT’s and MRI’s were all clear: no plaque or lesions on my brain. So, why does everything seem so dependent on this bloodwork? Did they misinterpret my CT’s and MRI’s? I feel like something is being hidden from me. I think they found something, but don’t want to break the news until they have everything, or need this blood to confirm, or something. But, dammit, it’s been 2 weeks! I don’t have time to fuck around – especially if I need serious treatments or surgery! Apparently, my pain, my condition, my needs don’t mean shit. My life is now based on other peoples’ schedules.
I couldn’t sleep last night. It was my first night without Tylenol PM. I’m trying to wean my body off it, but I am failing.
It doesn’t help that I have to do everything for the insurance company all over again! Every time I make contact, it takes them at least 10 days to get back to me. At that time, they’ll reveal VERY important information that they conveniently forgot to tell me last time I submitted my paperwork. I wrote to the president of the brokerage a week before the MRI, spinal tap & blood patch. I gave her my new address, wanted a status up-date, explained that I was having all this done & so would be in recovery for a while, gave her all the doctors’ and hospitals’ info, etc. I never heard a damn word. Amazingly enough, today she calls me. What did she say? She told me I have start over. I have to COMPLETELY re-do all my submissions & have all of my doctors RESEND their paperwork for the umpteenth time. Why couldn’t she do it while I’ve been on bed rest for the past 2 weeks? Oh, because that violates HIPAA. And she couldn’t have written back or called me to tell me that BEFORE? No, let’s have me wait yet ANOTHER 3 weeks before I find THAT out & learn that everything I have done is null and void. These people are getting paid to do what again?!
Damn. I’m tired. I’m frustrated. I’m very painful. I’m confused. I’m stressed. I am sick of the bullshit that surrounds Lyme disease. This is beyond ridiculous.