what happened in November

Before we go very much further on, it's important to get everyone caught up on what happened at the end of last year with my health. Most of you who follow me on facebook already know this, but since some of you don't, let's make sure we all know what's going on.

So, towards the end of October (Oct 24 - according to my records) I began having a migraine, which wasn't unusual. I tried my usual remedies. Imitrix, my prescribed migraine abortive, plus Aleve. Then the next day when it had come back again, I took more Aleve. That's usually about the max I like to treat my migraines - they say not to take meds more than 2-3 times a week so as not to risk medication overuse headaches. And my Imitrix is only effective at the beginning of a migraine, so that was over and done with. So, not much more I could do with medication. After that, it's just the rest, dark room, ice packs, etc. The longest my migraines had lasted up to this point was I think 6 days or something so.....

I waited.
Having a migraine pretty much aggravates the Trigeminal Neuralgia pain so everything just hurts worse and I'm no good for anything. In bed. Eye Exploding. Hammer pounding on the side of my head. Needles jabbing my face. Everything.
I hit 6 days. 7 Days. We're talking constant migraine. No relief. No break. 8 days.

I decided at this point I needed to go see a Dr. This was waaay too long to have a migraine. Surely they could give me something to "break" it.  Right???
He gave me a shot of morphine, toradol and phenergen. I came home and slept blissfully for about 18 hrs.

Then I woke up and the migraine came back again.
You've got to be kidding me.
Day 10. Day 11.

Day 13 I went to the InstaCare because I couldn't get in with my Dr. and I didn't know the Instacare can't give narcotics. Darnit. So they gave me shots of Toradol, Benadryl, phenergen, and Decadron.  This didn't do a darn thing.

The next day, I called my Pain Management Dr (although he'd never done anything for me), and my neurologist, and my primary care Dr, telling them I'd had a migraine for 14 days and asking if I should go to the ER or what I should do because I couldn't handle the pain and I couldn't get it to stop. Anyway, they all agreed that the ER might be a good idea at this point. So I got Zac to come home and take me to the ER. I just needed the pain to stop. I thought I was going to go crazy.

So, at the ER they didn't even really know what to do (so frustrating). There's no magic bullet to make it go away, they said, especially since I'd already tried so many things.  But they ended up giving me an IV of Bendadryl, Toradol, Morphine and Haldol. Also giving me oxygen.  The haldol was the only thing I hadn't already tried. It's a powerful anti-psychotic and it made me feel really weird, kinda floaty, detached and I didn't really like it at all. I don't think I'd want to take it again.  I think it helped the pain for the next day. I was pretty out of it and slept most of the day. I just felt really shaky and weird, mostly. But by the day after that, the migraine came back again.  So that was day 16.

During all this time, of course, I'd been asking everyone I knew for any advice or help to get rid of this awful pain and everyone was throwing advice at me. Here, go see my chiropractor! Have you tried this? You should go see this Dr, he's fabulous with headaches! Have you tried acupuncture? Hey, my cousin's sister's daughter saw this Dr and he did this thing and she never had migraines again, you should do that too!
And I admit, I was at a point where I was willing to try about anything!  I was so desperate. Truly, truly desperate. But, I was also completely incapacitated by pain. I hardly moved, at all.  It just hurt to move. So it was a difficult thing to balance wanting to get more help and barely being able to survive.

But, on Mon Nov 11 I called my neurologist again to tell her I really needed some help. I'd had the migraine for 19 days. And her assistant (who handles all the phone calls) was so insensitive and rude to me. Basically told me there was nothing else they could do, I just needed to take the medicine prescribed to me, blah, blah blah. And I kinda lost it and broke down sobbing over the phone. And she says, well do you want me to leave another message for the Dr or something?  And I just said, No!! I think I'm going to find another Dr who will actually help me!!
And, so I fired my neurologist.

So that day I found a new neurologist. And I had a friend who got me in with her Dr who was supposed to be really good at treating migraines (I actually thought he was a migraine specialist, but he's actually an integrative medicine Dr). And I did make an appt with another friend's chiropractor, because I decided I might as well give it a shot. I needed to get rid of this migraine and I was willing to do anything, from any angle, to do it.

The next day I saw the Integrative Med Dr and he took 9 vials of blood to test for a whole bunch of stuff.
And the day after that I saw my new neurologist Dr G. and he was concerned about my sleep and wanted me to start on a migraine diet and go to bed much earlier and get a sleep study done. And that night I went to a workshop for the Rezzimax vibration tool that I ordered is supposed to help headaches (and helped my friend with TN). He did a hands on technique on me called intra-oral masseter and pterygoid release on the jaw joint in my mouth which was extremely painful but is also supposed to be very effective in knocking out headaches. But that didn't work for me either.

At any rate, that migraine lasted for 22 days. Thereabouts. And I had a couple days break before it started up again. So does that really even count? I have no idea.
But it was pretty much hell. And I gained about 10 pounds in that month's time because I barely moved at all and it was so so horrible.
I'll tell the rest of the story with what's happened with those Drs (and more) in another post. Phew!

what I believe

I want to say first and foremost that this is not a post about gay marriage. So please don't make it about that.
Nor is it really about religion. This is not about debate, or proselytising or converting. I really don't care right now what you think or where you stand and I am not going to tell you right now what I think. About anything. This isn't about any of it. I've just been thinking about this a lot lately, as the result of many accumulating experiences, and I just need to get this out.

What this is about is kindness, respect, and compassion. Always.
Always.

I will tell you that what I believe is that everyone is deserving of respect no matter what. (Ok, unless they are hurting or somehow abusing people or animals. But, other than that...)

 I believe that the most good can come from approaching you at the table and sitting with you at your side of the table and trying to understand your point of view.

 I believe that curiosity and wanting to understand why someone thinks the way they do and how they came to think that way is more beneficial than shoving my point of view down their throat. Understanding. When's the last time we tried to really understand someone else whose thoughts are completely different or even opposing our own?  Have we ever tried to do it? Are we so afraid that we will change our view that we can't even entertain their viewpoint? Here's the secret: they will never be able to convince us just by argument. So don't be afraid to be quiet and listen. And the other secret: we will never be able to convince them. So be quiet and listen.

I believe that harshly criticizing, belittling, minimizing, or making fun of someone's deeply held convictions or beliefs is not respectful. And that there are ways to disagree, discuss and debate without doing those things. I know it's possible.

I know there is kind of a platitude out there that we "choose to be offended" but I don't buy into it. It takes responsibility off of the speaker to say whatever they choose, offensive or not. But that's not true. Words matter. What you say and the way you say it, matters. We choose what we say. Sometimes we make mistakes in those choices. I know I do and I regret plenty of them. But we learn from them and we try to do better. If anyone has ever felt like I am not listening to their point of view or that I have been offensive, please let me know. I would like to reconcile that. I'm serious.

I believe we matter and words are important. I'm a word person. This is something that is important to me.
You matter and the way you speak matters.
That's what I believe.

And finally, I am committed to removing people from my life who do not consistently treat me with kindness, respect and compassion.  There are no excuses.

(PS - the facebook page TBK (To Be Kind) is one of my favorites and definitely worth looking at. I believe in it.)  :)

keep me here

(I was writing on facebook that I was struggling but that I have a wonderful husband and kids and that sometimes they are all that keep me here and I was reminded of this poem I wrote in 2010, before any of this other pain stuff started. It was just when I was struggling with depression, as I have for many years.  And anyway, I just thought I'd share it. I don't often share my poetry but now is as good of time as any I suppose. I don't feel a lot of hope right now.  But time passes anyway. It just keeps going. Here's the poem.)


(Nov 13 2010)

keep me here

I am tethered
to the earth
by these strands tied to me
gratefully knotted
around my wrists
and knees
keeping me
from disappearing.

I am bound
to this life
by seeing your face
and knowing the pain
I could cause
if I were to go
and leave you

But I can feel the tug
and pull
and strain
as something else fights to
drag me away
I can feel the
strands digging into my
flesh
and wonder
how long they will hold

and sometimes I
wish
I were not bound
and did not feel
the love
which holds me
So that I could go
and drift away
because sometimes,

you are all
that keeps me.

A few of my favorite things: 2013

(my brain's all over the place so be prepared for some randomness)

This song has become one of my favorites that I discovered last year. It may be old news for you. I have no idea. But it was new for me last year. So here it is:




Sonny and the Sunsets: Too Young to Burn

I even choreographed a pretty awesome family home music video in my head through many many hours spent in bed,  that I thought I might make if I were healthy and super motivated as a Christmas card video to send out to family and friends and everyone would think it was soo awesome and cool, but obviously that wasn't happenin'.

So, just enjoy the song.
You're welcome.

(PS. Comments. I need them. Please?)

Quick Update

This will be just a really quick update. I am finding that my goal to blog more is being very quickly frustrated by an obnoxious migraine. I have a number of blog posts swarming around in my head but I can't write well when I hurt. I don't have patience, things don't come out the way I want them too, the computer screen hurts, I'm grumpy, I hate everything I write, and it just doesn't work. Right now I am on day #7 of another migraine, in addition to my daily facial pain. It's making everything difficult.

Yesterday I saw my new neurologist (this was my 3rd visit with him). We are in the process of getting pre-approval for Botox treatments for the migraines. They will be injections every 3 months but it might take up to a year of treatments before I will know how effective it will be for me. I discovered that I had 195 migraine days last year so I decided that's just a little bit ridiculous and this appears to be the next step for me so I'm just going to give it a try. If it doesn't help, then so be it. He also prescribed another new anti inflammatory to try and water pills for my ear pain, just in case it's related to menieres disease.  I have an appointment to see an ear specialist later this month to test for that.  I also had blood work done to test for the antibodies for Sjogrens disease which the eye Dr mentioned might be a possibility earlier in December since he thought I had severely dry eyes. The neurologist thought we might as well test for the antibodies. So. Ok. I am just a little frustrated because he thinks that all of my facial pain is related to my migraines and I don't really agree with him on that but he is very thorough and takes a lot of time listening and seems like a very good Dr on all other points so I have been willing to keep going to him. It's hard to overlook that frustration though. He doesn't think I have trigeminal neuralgia. Just migraines causing constant every day facial pain, plus other migraine pain. Whatever. Grrrrrr.

Tonight I have an overnight sleep study to test for sleep apnea. If it is negative then I will go on for step 2 in the process and have the daytime nap test for narcolepsy. The neurologist thinks my excessive daytime sleepiness and vivid dreams are abnormal and that this might mean I'm not getting quality sleep at night which could be contributing to my migraines and pain.  And I might have both conditions or either of them. So, I decided to go ahead and do the tests for them. I'm just hoping I can get to sleep with all the wires and everything connected to me and knowing someone is watching me sleep all night long.

Then Fri I have the ductogram scheduled for the discharge and pain I've been having for about a month. Not really looking forward to that. Just another problem I don't really want to be dealing with. They tested my prolactin levels already so it's most likely not a tumor on my pituitary gland in my brain (which also causes headaches - go figure) so that's a good thing.  It's just stressful all around.

Anyway - yesterday was also my birthday! I'm 39 now, which is really bizarre being just one year from 40.  I admit, I seem to always have unrealistic expectations for my birthday. I somehow never grew out of fantasies for the perfect birthday surprises, I'm not sure why, even though I know they will never ever come true (shh, these are little guilty confessions). But yesterday was particularly stinky spending about 4 hrs shuttling from the neurologist, to the hospital for blood work, to the store for prescriptions, all with a terrible migraine. It's ok though. My family loves me and I have good friends who sent me kind facebook messages. What more could I want, right?

Just a really crazy week. And that's the quick update for now! Sorry I can't manage much more than that for the time being.

Food Restriction Diet

 Here's the complete list of food I am avoiding as of Jan 2014, it may not be permanent (the whys will come soon in another blog post, this is for quick reference for those that just want to see what I can't eat, because it's so interesting haha): 

gluten, wheat, eggs, milk, aged cheese, (but I can have some dairy like sour cream and yogurt, as long as it doesn't have other forbidden ingredients, such as:), MSG, autolyzed or hydrolyzed yeast, yeast extract, seasoned salt, nitrates, natural flavors, soy, fermented vinegars (apple cider, balsamic), avocados, bananas, nuts, processed meat, anything aged, smoked, dried, salted, pickled or smoked, pickles, olives, raw onion, sourdough bread, snow peas, raisins, dried fruit, meat extract. I am also supposed to limit citrus to 1/2 c a day. And limit chocolate. And avoid caffeine (but I already do, except for chocolate). 

I think that's it.;) 

Happy New Year: Facebook Frustration and Back to Blogging

Happy New Year my dear friends!
Now is a convenient time I suppose to come to this decision (just coincidentally), I'm coming back to my blog!
I had resorted to facebook for most easy updates and things. And then instagram too. But then I realized just the other day that not only does facebook use its obnoxious algorithms to decide what you see on your newsfeed but apparently it also does so on your very own timeline so things mysteriously disappear.  So I had a post where I listed in tedious detail all the restrictions in my current diet I'm doing for the migraine diet and food sensitivities from a blood test I had done (that some of you may not yet know about) and then someone else had later asked what all my restrictions were so I was looking for that post so I could copy and post the loooong list and lo and behold, I could not find the post anywhere! So frustrating. So now I wish I had it in my blog so I could find it again. Ugh. I thought things in my facebook were a relatively permanent record (and apparently they are... I guess? somewhere on the facebook servers? or something.... but that doesn't do me much good if I'm looking for something that I posted and I just can't find it again.)  So I can't rely on it as a mini blog after all.  (Haha, are some of you surprised to find out I was using facebook in this way? Oh don't be. You should know me better that that.) ;)

So, now we come to New Year's resolutions of sorts. What this comes down to is that I will be trying to blog more often. Obviously I can only rely on my trusty blogger (blogger don't let me down!). Perhaps this will mean there will be some overlap and downright copying from facebook into blogger from time to time as I try to make sure I have things recorded where I want them. But that's just the nature of the beast, I suppose. And by that I guess I mean, my nature. The nature of someone who needs things recorded. Especially with my chronic pain and all that crap, I feel the need to have things recorded and I feel that having is it somewhere public might be helpful to someone else going through something similar. I know I rely heavily on the support of knowing I am not alone.

And I will try more to get my Instagram photos on here too because I know I have friends who don't have smartphones and can't view them. But I don't like to clutter up my facebook feed with macro shots of weeds either. So! This is where it's at!! Once again, I will be dumping all my life here on my blog folks! Hopefully.:) Stay tuned. I will be trying my best!
(ps - comments are the best motivator! please leave comments! keep me blogging - keep the blog alive!)