Feb 03, 2009
So it's been a really long time since I've written on this...or any of my blogs for that matter. I just thought I'd ramble for the sake of all the neglected words...poor little sops. I just had an apt with my new neurologist today. It was completely different from any appointment I've ever had. It was really long...at least an hour and in his office, not an exam room. We talked thoroughly about my history and he said, "Wow. I guess I've finally met my match." I believe that meant that he was excited about the challenge of figuring out my condition.
After talking extensively he said he thought I had pseudotumor cerebri...which is basically the conclusion I had come up with after reviewing my own file. I'm no doctor, but the process of trying to have a life has taken this bio-minor into...um...well, somewhere unusual. I have read so much medical literature it boarders on bizarre...and I'm not talking about the literature written for the average person, but the literature written for doctors. When I first started I was constantly looking up words in the medical dictionaries, but now it's a breeze...just a bit of persistence. You look up a word a few times and you don't want to look it up again...I'm too lazy for that. It's just much easier to just memorize all those terms, don't you think. Ever heard of anyone motivated by laziness. Silly? I'm a silly girl and will be the first to admit it. That being said, ANYBODY can do what I did by just being persistent and diligent. I did it with severe migraines and mulittudes of other problems, so if I can do it, anybody can do it. Just make sure you don't say, "Oh, I have that. Oh. That's me." to every darned symptom you read. You have to be totally objective and rational about it. You can turn yourself into a hypochondriac. What do they call it? Cyberchondria. It's a dangerous condition that kills...NOT. But it is dangerous. If you are a hypochondriac then ignore all my advice. I am virtually contagious.
Anyway, the thing that gets me is WHY IN THE HECK DIDN'T THE DOCTORS IN CALIFORNIA THINK OF THIS BACK WHEN THEY DIAGNOSED ME WITH PAPILLEDEMA, CAROTED BRUIT AND ELEVATED BLOOD VELOCITY IN THE CAROTED? DUH. It only states in all the literature to do spinal tap and mri or ct with contrast when finding papilledema. They did nothing but treat the papilledema and it keeps coming back. So to think that I could have possibly had significantly less pain starting a year and a half ago.....that pisses me off.
And I'm going to share this too: The same doctor that found the papilledema said, "Buck up. You need to accept that fact that you have migraine headaches and their is nothing you can do about it, so just take your meds like a good girl..." He then proceeded to tell me that he had a migraine about a month ago and felt like ****, took an imitrex and in fifteen minutes he was fine. I have a migraine every day and if I'm lucky an injection of imitrex gives me minor relief for two hours. I was taking 12 injections, 12 pills and 6-8 samples of imitrex monthly and still running out. Then I was in the ER for Demerol or delotid with phenergen shots about once a week.
It makes me mad. I'm relieved too and hopeful, but also mad. Wouldn't that make you mad? I thought there was some reason that I wasn't seeing why it wouldn't have been pseudotumor cerebri and that's why nobody ever mentioned it. I started to tell mom how I was feeling after the appointment. I said, "I'm kinda relieved but also kinda mad." and she cut me off and said, "You can't spend your life being mad for things that happened in the past." I totally agree with her, but I'm still allowed to feel mad when I am justified in feeling mad, express it, THEN MOVE ON. Right? Shouldn't I be allowed?
But I'm not. Expressing my feelings ends up being an open invitation to folks to tell me how I should be different and how many ways I am flawed because I have NORMAL feelings. How would they feel? I know plenty of women that are mean and snappy on a regular basis when they are feeling fine or just slightly irritable, but certainly not in severe pain. I rarely snap and I strive to never spread my misery to other people. Is that why people react so strongly when I display normal behavior? Because I'm too nice and I deal with the pain with a stiff upper lip, keeping my cheer, or at least compensating for the lack of cheer inside with jokes and silliness. Maybe they've grown to think that I am different than everyone else. That I don't feel things everyone else feels, so when I do express it, it's a shock.
I NEED to be allowed to express regret, anger or frustration? That NEEDS to be okay? Isn't that a vital part of healing? Don't we all need to get the angst out of our system, THEN MOVE ON? Otherwise we are just carrying it with us. We can either stuff it or let it out and let it go. And when you stuff it it just keeps coming back. So let it out people!!! Seethe and fume and spew, then be joyous and jubilant and share the love. Don't you agree that's the way it should be? We are not robots. We feel passionately, or at least we should. I'm not saying be witches and assholes. I'm saying that we should talk about our feelings and we should let other people talk about theirs too. That's part of being there for your friends and family, even if it is unpleasant for us to hear what we may perceive as "negativity," we still ought to be a shoulder for our loved ones to cry on.
Now perhaps I am ahead of myself. He ordered a spinal tap and then we will see, so perhaps I shouldn't be mad yet...but to think that there's a possibility that I could have had a life in this last year and a half, even just the possibility...and that basic tests that should have been done within 24 hours according to all the literature weren't done...and that nobody ever made the connection based on all the findings...and that an "UN-doctor" like me knows about pseudotumor cerebri and idiopathic intracranial hypertention but doctors don't....that's just not right. It bothers me, and YES, that is a "negative" feeling. Ooooooh! Scary!