It's 2 am and for the second night in a row I'm awake. I keep having nightmares. I've had nightmares all my life but since my Chiari symptoms have ramped up, so have they. I wake up physically shaking and sometimes screaming. Is this Chiari or just stress? (It's been a month since the urgent care doctor told me I couldn't work or drive until cleared by a neurosurgeon, the neurosurgeon took three weeks to tell me they'd rather have me see a neurologist first, my PCP can't find a neurologist with any openings any time soon and NO ONE wants to fill out the short term disability paperwork because, "It's not their responsibility.")
Sorry, I just need to vent. Not only am I *having* nightmares, this *whole experience* has been a nightmare.
Sounds like stress. Are you able to take control of this situation? Make appt with a chiari NS, a specialist in chiari? I wouldn't trust a PCP or neurologist deciding anything about your care.
I really appreciate all the advice and support. This has been so overwhelming... Being sick, losing my income (temporarily?), and bouncing from doctor to doctor. I can't take it anymore. I am going to call my PCP again today and tell her things are getting worse and I need help. She works terrible hours though (only three days a week) so it's hard to get ahold of her or get her to do anything in a timely manner. I don't think there are any Chiari specialists in Spokane. I know there's a good one in Seattle but that's 5 hours away and with no income at the moment... God help me, I just can't do it anymore.
Please vent as much as you need to. You are safe here & we understand. Maybe you should tell your PCP about our nightmares & anxiety. I think most Chiarians suffers from anxiety at times. It will make you feel worse. I hope you get some rest & never feel bad about posting to us!!!
I have been trying to get short term disability since this started but since I don't have a doctor reviewing my case right now, there's no one to fill out the paperwork. I was working, going to school, volunteering, trying to start my own business... and suddenly every time I stood up, my head would pound and I would start to gray out. My vision is doubled and blurred. My head aches every time I laugh, sneeze, use the restroom... I can't sleep. I'm nauseated. My body ACHES. When I went to the urgent care, the doctor revoked my driving and work privileges, but since he's not going to follow up on my case, he won't fill out the disability paperwork. My PCP won't do it either, and I don't have a neurologist or neurosurgeon yet. I have been calling, begging, pleading, crying... I don't know what to do anymore. I can't lose my job, my insurance... We are quickly running out of savings... I just don't know what I need to do to get the ball rolling.
Emmaline said:
Are you on temp disability? Were you working until you get sick? If so you can get disability through your employer, it not a lot, but it would be something... Do you have insurance?
7thhousedoula said:
I really appreciate all the advice and support. This has been so overwhelming... Being sick, losing my income (temporarily?), and bouncing from doctor to doctor. I can't take it anymore. I am going to call my PCP again today and tell her things are getting worse and I need help. She works terrible hours though (only three days a week) so it's hard to get ahold of her or get her to do anything in a timely manner. I don't think there are any Chiari specialists in Spokane. I know there's a good one in Seattle but that's 5 hours away and with no income at the moment... God help me, I just can't do it anymore.
I've tried twice to get her to fill it out and she said, "I didn't diagnose you, this is not my responsibility." Doesn't she understand I DON'T HAVE ANY OTHER OPTIONS!! God I feel like I am banging my head on a brick wall. I have not made any progress with any of this since the day it started. Supposedly they have faxed my information to a neurologist who will "look over my file and decide whether or not they can help me." For %#&@'s sake... It's not like I'm asymptomatic, I am SICK and I can't handle it anymore!
Sorry for the frustration and ranting. I am so lost and I feel like I have no one on my side.
Emmaline said:
Katrina, you can have your PCP fill it out for you until you get to a NS. If you have to, get it from your employer yourself to give to your PCP. HR is accustomed to doing this for employees, and you're entitled to it. They can possibly fax it to your PCP, all the better. Your PCP has to do this for you, you can't work. The nurses there or the PA's can help until your physician is in to sign off on it. Good thing is they retro back from your last day at work.
What is the reason your PCP won't fill out the paperwork? I would get the papers yourself, fill them out and insist your PCP signs them. Thats what I did, I filled them out for the PCP and she just needed a quick signature. Do you have someone who can go with you to PCP and insist they do this? You need someone to advocate for you right now.
She said it's because she didn't diagnose me and isn't a neurologist. I gave my husband a copy of the paperwork and he's going by their office on his lunch break to make them sign it, since I can't drive. I need help but I don't know where to turn...
adria said:
What is the reason your PCP won't fill out the paperwork? I would get the papers yourself, fill them out and insist your PCP signs them. Thats what I did, I filled them out for the PCP and she just needed a quick signature. Do you have someone who can go with you to PCP and insist they do this? You need someone to advocate for you right now.
Update: my husband dropped off the paperwork with my PCP, and we also faxed everything from the urgent care to the short term disability people. My PCP called and asked if I planned on coming to pick up the paperwork this evening... She knows I can't drive. I told her there should be a number for her to fax it to. She's going to look at it again and call me back...
She also faxed my information to a neurologist at a headache center (?!) who is 2-3 weeks out for an appointment, IF he feels like he can help me. IF?! I feel like I've been drawn and quartered and the leftovers dragged through a cactus patch. If he feels like he can't help me, I don't know where to turn. Probably the Chiari specialist in Seattle... IF I can get an appointment, IF we can find the money to go, IF I feel like I can make the five hour drive without getting seriously ill...
Prayers, positive thoughts, and toasts to my health are appreciated more than you will ever know. I would not wish this on my worst enemy.
I'm so sorry to hear that Becki. :( The stress surrounding this disability is insane! I have endometriosis as well and people treated that with more urgency than this BRAIN MALFORMATION!!
Becki Bowling said:
I read this yesterday & ironically I had a nightmare last night that they had to admit me & redo my surgery. I think the stress is getting to me :(