Author Topic: One of 'those' nights  (Read 4173 times)

nftwoed

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One of 'those' nights
« on: July 10, 2013, 11:08:27 pm »
   Can't sleep, need to use the BR every 5 min, upset, unsettled. OMG; What I wouldn't give for a PCP who actually listens to my feelings and can interface other health problems with NF-2? She's not living the problems. I have been for years and still am.
   High BP?, pills, no vestibular system, deafness. No one slows down. No one will write down what they're saying. They just stare, or repeat the same garble again like robots.
   Dizzy and more pills prescribed. I complain; "you'll get used to it", says Doc. Shucks, kill ya with my car first, driving to the appts. Dizzier than ... All I want to do is lie down. Like the Doors song; "There's a driver on the road, his head is swimmin like a toad." Funny, I don't have high blood pressure outside medical facilities. "We want a normal reading here, in office", says doc.  Impossible!
   More thrush too. "Oh; We can't give you more fluconazole". Then let me die in peace.. I hate the medical establishment unless they have morphine and someone to remove ANs, set bones, etc.
   Drs; One can't live with them at times and one can't live w/o them at times. Well; One day the living in this body will be done and all will be forgotten.
    One time in trying to explain chronic dizziness even to my Neurotologist, I finally had to say; "Dr, you have to live it to know it." Dumb **** just sat there and stared at me! I was sure he was thinking about lunch after my 3 hr. wait in the waiting room to see him.
   Sometimes life just sucks!

Jill Marie

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Re: One of 'those' nights
« Reply #1 on: July 10, 2013, 11:26:07 pm »
Hi,  I wish I could reach through my computer and give you a hug then give you some information that would help you find someone that truly understands what you are going through, but I can't.  Please keep searching for someone that can help you.  I've been dealing with my issues for 21 years, gave up after 20 then found some help, hope you can too!  Jill Marie :) 
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Gloria Nailor

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Re: One of 'those' nights
« Reply #2 on: July 11, 2013, 07:49:41 am »
I can just read the frustration, anger and loss of hope in your posting, sending good thoughts your way.  You need to look for different providers, ones that will be more understanding and help you solve your issues.  I am a nurse and can tell you there are wonderful providers out there who do care and listen, keep searching until you find one.  I am not sure where you live, but you need to ask around and ask friends and family and othesr with acoustics who they see that they respect and trust.  I don't know if you see a therapist, but I highly recommend it, they might be able to help you sort out your emotions.  Not sure if you take an anti-depressant either, I love my Wellbutrin ( and so does my family : )
Don't give up hope, none of us understand why we are going through this and everyones journey and outcome are so different, hang in there, life is worth living!
4/2011 diagnosed with 3 cm AN on right side
6/15/2011 retrosigmoid craniotomy which resulted in SSD, severe facial paralysis
7/2011 gold weight placed right eye lid
5/2012 tarsorrpapny right eye
6/2012 woke up with a smile
1/2013 cranioplasty because a screw came out of my head!
6-7/13 regrowth, GK

nftwoed

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Re: One of 'those' nights
« Reply #3 on: July 11, 2013, 10:46:24 am »
Hi Jill;

   PM'd you ... I hope your day is nice. Thanks to all who commented re, my frustration. I still feel sick today with the BP med and 2 hrs. sleep.


Hi,  I wish I could reach through my computer and give you a hug then give you some information that would help you find someone that truly understands what you are going through, but I can't.  Please keep searching for someone that can help you.  I've been dealing with my issues for 21 years, gave up after 20 then found some help, hope you can too!  Jill Marie :)

 


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