o.k., so i haven't posted in a while...

well, doesn't seem like anyone reads this anymore. maybe 'cause i haven't been good about checking anyone else's blog.

i've just been spending the bulk of my time on photography...surprise anyone?!

so, i haven't posted in a while. want to know why that is?

well, last friday i saw the neurologist. the one i'm waiting on for botox. the one i've waited 3 mos. to see. guess how long he spent talking to me?...

you probably guessed right...less than ten minutes. i was so shocked when he got up and shook my hand that i let him just walk right out of the room.

of course i told him my concerns with my medication, but he gave me absolutely no suggestions, not even the "go talk to dr. so and so about it" line. highly disappointing. do you think i walked out of there with a botox appointment? well, of course not!

then that day i had quite a bad headache, took quite a few meds to get it under control. soccer jamboree was saturday and that was a crazy day, but i felt so good that that evening we went to leroy and jenny's farm in grays river, took max-ay and tse's friends big daddy p and cooper, had an ABSOLUTE blast.

but, sunday a.m. woke up with a KILLER migraine and i mean killer. maybe it was 'cause i o.d.'ed on chocolate. shoot, i know better than that. soooo stupid! anyway, it picked up speed and the pain was absolutely out of control within a few hours. when my kids are walking around upstairs and i'm in the basement (we have a big house, 2800 sq. ft) and i am writhing in agony from the noise, then wishing i was dead...well, that's just a sign that i'm pretty bad off. duh, right?!

so you can bet that @ 10 a.m. when the clinic opened i was there in quick care looking for the i.v. meds again. unfortunately, one i.v. fluid bag and 3 meds later my pain was tolerable, but still there. i had the hubs take me to my parents (now that's a quiet place) had a bite to eat and took a snooze. probably only 45 min. and took a few more meds before my rest. when i woke up i felt perfect. very tired from all the pain and drugs but no headache. wahoo!

while in quick care the attending dr. had treated me a month ago. first thing she asked was "what's going on with the neurologist". i couldn't even talk for a few minutes because i was crying. she suggested i see a neurologist an hour away. i said good idea but i am more than ready to go to the headache clinic that is 3 hrs. away. she said it was MY decision what i wanted to do and that i should tell my primary care dr. what my decision was. but she HIGHLY suggested i see someone different.

oh, and i forgot to tell you that wonderfully polite neurologist actually asked me (because believe it or not i have improved, but with still unacceptable results) if i wanted to POSTPONE the botox. hello? like i haven't already postponed it? is he a freaking idiot? is he just lazy? does he actually not want to do it and just was seeing if we could bag the idea? since when is 2-3 migraines a week acceptable?

so as you can see, i needed some validation. the last thing i wanted to do is change neurologist. he has only seen me twice and tried one med. but....who is going to advocate for me but me?

so these are the things i've been mulling over. i decided that i am going to e-mail my pc about it and am waiting for my password to come in the mail. also, next week i have an obgyn appointment to talk about the medicine that is treating my menstrual migraines, and have found a new psych to talk about if i can increase the mood stabilizer/migraine med. i am doing all of this because the neurologist had absolutely nothing to say about this and i was hoping that he would give some guidance, imput, suggestions about this.

i mean, like i'm supposed to know what to do .... last time i checked i was the patient....

on another note i started a pain clinic. it meets for 8 weeks and i just had my second meeting yesterday. i am going to try to take as much away from it as i can. the one real interesting/helpful thing i have learned so far is this:

chronic pain, especially over a long period of time, sensitizes the nerves to pain. nerves become "hypersensitive" and are less able to block pain messages that go to the brain. this explains why two people with the same problem experience differences in their pain levels. i have had pain problems since childhood, so obviously my pain blocking capabilities and nerves are fried.

the goal in the pain clinic is to explore different methods of helping the body block these pain messages, identify treatments that at least help, and finally devise a pain management plan. since my pc quit filling my percocet perscription (ok, i admit, i did abuse it...you don't want to hear that story), but it helped when everything else failed.

i am hoping that the clinic will help me learn new and better ways of coping because the ones i invented myself are downright shitty, unhealthy and usually flat out dangerous. i really wish i would have done something like this a long time ago.

new things i am trying:
going walking everyday
deep breathing
guided imagery (relaxation technique)
music therapy
getting fresh air and enjoying the beauty of nature

things i want to try:

i am really hoping that my new psych will refer me to a relaxation class that includes learning biofeedback. the class is an hour away but who the hell cares? i am wanting to go anyway....

so these are the things that have been rolling around in my brain, disturbing me quite a lot and i haven't wanted to talk about them...until now.

so there ya have it!


Grandma Jacki said...

Hugs - You must be a extremely wonderful human being to go through what you go through yet give so much to others, especially to your kids. Thanks for being a friend (even if it's in cyberspace!) GJ

Suzanne R said...

I have been reading your blog, my friend. I found your last entry thought-provoking, and I am feeling for you in this one. My theory is that your neurologist doesn't really know how to do the botox but won't admit to it -- just my opinion from what you have said about him and the postponed treatments before. I do hope you see someone else or take whatever steps will work in managing your terrible pain!

I admire, too, the way you are there for your family and are such a wonderful wife and mother despite what you are going through.

I will be remembering you in my prayers.

CameraDawktor said...

grandma jacki~ thanks!

suzanne r~ thanks, i agree with you, i think he doesn't know how to do it and won't admit it. therefore, he's about the last person i want to do it. when i do it, i want to know its done right and whether it works for me or not!