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!)

treading water

You know that feeling in a swimming pool when you think you've reached a point where you're at a depth where you should be able to reach the bottom so you stretch your feet down, and then all of a sudden you can't find the bottom, and your chin dips under the water, the bottom isn't where you thought it was at all, and all of a sudden there's that moment of panic, disorientation, almost of falling, sinking? For a moment you keep going down, how far down it is to reach the bottom? You don't remember the water being this deep. And you can't find it. You bob back up to the top, gasping for breath, looking for air. Are you where you thought you were? Everything looks the same. But everything underneath your feet has somehow changed.  You look around you and everyone seems to have not had any trouble navigating this new depth. Did they grow somehow over time and you missed it? Are they all taller and breathing easily over these inches of water that are suddenly over your head? They glide easily through the water where you are left treading water.

I feel like I am perpetually stuck in a moment like that. That feeling of losing your footing and not being able to find the bottom of the pool. The water feeling too deep somehow.

And yes, I see it. I know how to swim. Of course I can do this. I can get through this. But it takes so much more out of me to tread water and swim everywhere, when I used to be able to walk easily through these depths. And sometimes, I can hold my breath and pretend to be the same as I used to be. I carry rocks in my pockets and walk along on the same ground as everyone else, underwater, and I try to smile. But I can't for long. I have to come back up to the surface to catch my breath and stop and tread water again, while you go on ahead without me. Or I bob up and down, in a crazy lopsided way, grabbing my breath and coming in and out of the water, and you will wonder what in the world I'm trying to do, but I'm just trying to stay doing what I remember I used to do. It's not at all how I remember doing things. I don't remember everything shifting below my feet like this. I don't remember how everything looked so much easier to everyone else. Did I really used to glide so easily like that too? Just doing things? Was it really ever easy? I might have always been somewhere on that edge, slipping and sputtering with water at my chin.

This is what it's like living with chronic pain. Some days are harder than I ever think possible, in ways I never expect and I never feel like anyone truly understands. I feel like the ground under my feet is constantly being pulled out from under me and I can barely tread water and keep going on the bare basics.  I don't know if anyone, even Zac, can ever really grasp how overwhelming it all can become in some moments. Pain and depression coupled together are nasty nasty unrelenting beasts.  They are like underwater serpents grabbing my feet and trying to pull me under. This water is perilous. There are too many ways to go with this metaphor. Let me just suffice by saying please help me along the way, if you see me struggling to stay afloat.  There are monsters swarming beneath my legs, and I cannot reach the bottom, even though it seems like I'm tall enough that I should. And sometimes I've been treading water for far longer than you may realize and my arms may just be at the end of how long they can hold out and burning and screaming for rest. Please be patient with me and I will try to do the same for you. Forgive me when I am tired and overwhelmed. There are no excuses for poor behavior ever. But maybe understanding can be a salve for hurt sometimes. That's all I ask.

Things You May Not Know About Me (Bonus Edition)

If you've been on Facebook lately, you've seen the thing going around where someone gives you a number and you post that many things about yourself that not everyone may know about you. But not all of you may be friends with me on facebook and some of you stalwarts may not even be on facebook at all.  I know. 

 So, I am reposting the 8 random things that people may or may not know about me. And then, as a BONUS for those of you that already saw this on my facebook page, I am going to give you some extra stories that you may not have already heard!! So keep reading, you won't regret it!

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  Alright I was given the #8 so - 8 things people may not know about me. I've made a lot of new pain buddies and many people who have only known me since all of that started so there are some things that people may not know about me before all that started such as: 

1. Right as my pain was starting I was training for and completed my first and only sprint triathlon. I miss really exercising. 
2. I read approx 100 books a year on average and I will read books about just about anything.
3. I've written in over 50 journals.
4. I birthed 3 of my 4 children naturally and breastfed for a total of ... approx 6 1/2 yrs - lol.
5. I never figured out what I wanted to be when I grew up. I was interested in too many disparate things. This still really bothers me. I'm a stay at home mom, which is what I really wanted. And now I am mostly bedridden with pain anyhow. But if I wasn't those things, what would I be? I don't know.
6. I consider myself a half expert in ultra marathon running since my better half is an ultra runner. It's a funny thing being a spouse of a crazy person like that. 
7. I play the violin but it's another thing that is aggravated by the facial pain. I haven't really been able to play.
8. One thing I love that not many people know is bread making. In another life I think I'd like to live in Germany and own a bakery. Yummm.

One thing I learned when my older sister did this on her facebook is that when she and I were quite little (I was 1 or 2, and she was 4 or 5), my parents apparently picked up a hitchhiker and had him sit in the backseat with us. He proceeded to threaten my sister and I with a knife to rob my parents or something. My sister remembers this happening to her. I obviously do not - but I'm still kind of disturbed to learn about it.

Another thing that happened to us when we were very little is that my mom was traveling alone with us by train to visit relatives once and when the train was crossing a bridge over a river it crashed and tipped over and everyone had to walk along the windows to evacuate. I was a baby and so my mom was carrying me. My sister was 3 yrs old and my mom was holding her by the hand. This was in the middle of the night, so it was dark and she could only hear the river rushing below them. I imagine this must have been terrifying.

One thing that I do remember happening when I was little was when we had a copperhead snake on our back patio. This must have been in the somewhat early 80's. Our neighborhood had it's own police force so my mom called the police and the officer came to our house and blew the snakes head off with a rifle. I'm not exactly sure why this was the best course of action, but it saved the day!

We had a lot of snakes around our semi-rural neighborhood when I was little. I remember a time when I was riding my tricycle around my driveway, I must have been around 3 or 4, and I came around to the front of the house to our sidewalk and there was a huge black snake in the middle of the sidewalk and it reared it's head up at me. I have no idea what kind of snake it was but I was absolutely terrified and I just jumped off my tricycle and ran away.

It seems that we also somehow had snakes that got into our basement somehow. I don't know how it happened. Mom? Dad? Someone might be able to tell me how we got snakes into the basement. It might have had something to do with flooding. I'm not sure. But then I developed quite an irrational fear of having snakes in the basement. I had nightmares about it for years.  In fact, it's entirely possible that this didn't really happen and it was all just dreams but I really hope that's not the case because that would be really freaky.  I really think it did happen once and that's what started the nightmares.  And my new neurologist is also a sleep specialist and he asked me a lot of questions about my sleep and dreams history and he says that it's really not normal to become confused between what is real and what you have dreamt. So. Yeah.

I also had fears of seeing Giants looking at me through our second story windows. No idea why.  And tornadoes.  I had a huge paranoia of tornadoes. I had heard that they sound like trains so I would lay in my bed at night, listening to the wind and straining to hear if it sounded like a train approaching, my heart pounding.  I also slept on the top bunk of a bunk bed and I was so afraid of a tornado coming, I would move to the floor to sleep, because I thought that if our roof blew off I'd surely be the first to go with it and I didn't want to get blown away by myself.  This was when I was about 9 years old. I know this kind of fear is developmental as children learn about the world and become afraid of all the bad things that can happen but I'm not sure if all kids are as afraid as I was or for as long as I was. I don't really know.

Anyway - so hmm there's an interesting collection of stories about me that you may not have already known. Some interesting little traumas I don't even remember which reminded me of some little weird memories and some of my early fears. What were you afraid of as a child? Do you think my fears were unusual?  Do you have things you dreamt that you can't remember if it really happened or not? Do you think early traumatic experiences that you can't even remember can still affect you? 
Anything else you feel like commenting?  Please do.:)

Paralyzed by Choice

There is an oft quoted sentiment that if we put all of our trials and troubles in a pile and saw what everyone was else was truly going through, we would very quickly retrieve our own back for ourselves rather than trade with anyone else. I can't say that with any certainty. But I do know that I am forever grateful that I am not the one in charge of choosing for myself which trials and tribulations I will go through in this life. I know for certain we will each have our fair share. None of us is spared some measure of sorrow and hard times, of some degree. I don't know how it all works.

I'm sure all of us have thought through that scenario at some point of whether we would rather be deaf or blind. That thought alone has often panicked me. Which would I choose if I had to? To give up music, soaring notes, melodies, harmonies, rhythm, that calming influence, the rousing beats, dancing.... so much of me is in music. So much joy, so much expression, catharsis. To hear people's voices, laughter, rustling woods, water, nature. Would that be my choice?

Or would I give up sight? To be able to look into someones eyes? To see the smiles on my children's faces. The colors of autumn. Sunsets. Trees. Light. I take so many pictures now, I see so many things that I never would have seen before, never would have noticed. Would I be able to give that up? Would I be able to live in a world of darkness?

I don't know.

And now, I have constant pain. And I will admit that it is hard not to compare my struggles sometimes with others' and wonder sometimes, would I rather have theirs than my own? Which would be easier to deal with? I am ashamed sometimes of my thoughts. I am ashamed to admit to them.

 But sometimes I think I would rather have a terminal disease, because then I think at least, at least their pain and suffering will come to an end. Yes, it is horrible and terrible and awful, but at least they and their loved ones know it will soon come to an end. And yet I know they would yearn to trade with me to be able to live another day.

And I think, oh how I would rather have this pain be anywhere, anywhere besides in my head and my face because I just can't think. The face is just so sensitive and when your head hurts, it's just so hard to do anything at all. You can't do ANYTHING without involving your head and thinking. But, I know that's not fair. Because everyone with pain is suffering. And I become insufferable when I think like this.

And sometimes I think I'd rather just be paralyzed and not have pain, then be in pain and be able to move. Because if I were paralyzed and have no pain, at least I could think clearly and be able to use my mind and do something of worth. I could put my mind to good use and be a functioning, serving and contributing member of this world, instead of a writhing whimpering thing in constant pain in bed that everyone has to avoid almost 24 hrs a day.  Instead of not being able to do anything.  And yet I know they would trade just about anything to be able to move and not be imprisoned in their own bodies.

I don't know.

But you see, I don't make the choices. I didn't choose this. They don't choose their trials. It must be better that way. I think if we looked at the whole pile of everything that everyone is suffering we might be paralyzed by all the choices sometimes. We might be tempted by some of them, like how can I possible know how it would feel to me to be deaf or blind? Which will be better for me? Which would I really rather be? Which would I be able to endure?  And when I am in the middle of it, how will I possibly be able to bear the weight of it? To say to myself, this isn't what I wanted, I want the other one back now.  But no. There is no choice.

So I am glad I am not the one making those choices. My choice is how to get through this. Sometimes that doesn't even feel like as much of a choice as I once thought. It's like when people are in a crisis situation, they don't often think to react in the ways you expect that they might. They sometimes do bizarre instinctual reactive responses. It's not all conscious choice. So I go into survival mode, fight, flight or freeze. But I get through.  My choice is to wake up and get through.  That is what I do.