Sunday, May 29, 2011

Struggles of the last month...

It's been a very busy end of the school year (just a reminder--I'm a school teacher). My symptoms had been getting very bad and I spent one entire week calling me doctor every day trying to get a hold of her. I knew it was time for a spinal tap and I was trying to get a script from her to go get one. When she finally called me back on Friday, she sent me to the ER to get one. I get very frustrated with her, because when I feel like my vision is getting worse and fast, then I call her right away, but the problem is.....I wouldn't have needed the additional ER bill if she had done her job and gotten back to me right away. The spinal tap was almost two and a half weeks ago. I had called her back the following week to try and get an appt to talk about going to a larger dose of diamox and jumping on topamax which she mentioned to me on the phone. Well, the office has not called me back and I'm frustrated. Yet another doctor who doesn't return calls! (That's two neuros just since being diagnosed in December of 2010.)

The midwest has been a mess of storms and for the first time since being diagnosed my brain was a mess during the storms (and even when it wasn't). My pressure is so high again (less than two weeks after the tap) that I have been really having a difficult time. I went to the ER yesterday (Sat) and was given two rounds of dilaudid, but when I got home it had worn off and I was right back to where I was. The ER doc gave me another script for vicodin and doubled my dose of diamox since I was at a lower dose than what is considered "starting" dose. Only had the double dose last night (haven't taken my nighttime meds yet today) and of course haven't noticed a difference, but hope to soon. They offered another spinal tap at the ER and I declined. I had too much pain with my last one and unless they are going to use a general anesthesia, I can't keep doing this to myself. I'm going to call my PCP tomorrow (doubtful they are open, if not Tuesday) and ask them to call and get me an appt with a neurosurgeon immediately. I constantly have a pressure headache, but also have a spot on the top/right/frontal area of my head that feels as though there is a knife being stabbed into it. I am nauseous, constantly overheated, have the yellow spiderweb over both my eyes, have eye pain all the time, and have the whooshing/constant noise as well. To say the least I have been miserable. I've been pushing through work each day knowing I am getting down to the end, but it's been very hard to walk into work feeling like this.

Foot surgery in ten days, and summer comes in 9 days.
Signing off for now....

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