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!)
Wednesday, January 1, 2014
Tuesday, November 19, 2013
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.
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.
Monday, November 18, 2013
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!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.:)
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!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.:)
Saturday, November 2, 2013
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.
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.
Tuesday, October 22, 2013
Kristen's Little House of Horrors
AKA: What this Feels Like
In honor of upcoming Halloween, and since I am constantly asked what my Trigeminal Neuralgia feels like, I thought I'd give everyone a fun little scare and welcome you to my own personal horror and let you into my virtual head where you can experience it all firsthand and then leave without ever experiencing it again! Lucky you! Come in, come in! I won't bite! ahahahah.
Please enter one at a time, watch your step, that's it, leave your personal belongings at the door thank you. Yes, you are now finally entering the Kristen's Little House of Horrors.
This is a bare cold semi-lit warehouse room like a scene out of The Walking Dead. A single chair, much like a dentist's chair is in the middle of the room, with a metal tray next to it filled with odd contraptions and needles and sharp pain inflicting devices. The legs, arms, and headrest of the chair have straps. There is a single light bulb hanging on a string down above the chair.
Please, sit down. Make yourself comfortable. Or as comfortable as you can.
You sit.
Your arms are tied down. Your legs are tied down. Your forehead is strapped to the headrest.
This is merely for your own safety and for the safety of those around you.
ok. I now need your verbal consent that you are ready to proceed. yes? would you like to muffle your screams, yes or no? no? ok then.
- We will first tape this electrical impulse wire straight across your cheek which will direct a steady ache deep in your cheek bone. There.
- Now, we are going to inject another one deep into your ear to cause a terrible constant ear ache.
- Just a second while we set up the needle darts to periodically shoot into your ear drum. There... we... go.
- And then, hmm... this one's tricky... this is a metal clamp with sharp teeth that will randomly clamp the outside of your ear.
Alright.
- Now, we're going to take this tiny needle and slide it up in between the skin and the bone right here on the side of your nose. Yes, feel free to moan, groan, or scream if you feel the need. That's no problem at all. Go right ahead.
- And we will insert another needle up here along your eyebrow.
- And put one right going right across lower eyelid.
- And then here we're going to put another randomly clamping metal clamp on your upper eyelid. Ah, perfect.
- And these eyedrops will make it feel like your eyeball is going to explode. Very good.
- Now that we have those in place, we will now have these hypodermic needles randomly timed to be stabbed in your face, right there across your cheek, in the roof of your mouth, in your upper lip, in your lower jaw, in your temple and in your jaw joint.
- ok, and now open your mouth please and say ahhh? no just kidding no need to say ahhh... we will now be performing root canals on each and every tooth on half of your mouth .... without anesthetic. Yes I'll just slide this in to keep your mouth open. Please stop screaming now, thank you. Remember there won't be any lasting effects from this, it is purely magical and just for fun. Isn't this fun?!?!?
Yessssssss...... drills please................. there, that isn't so bad, is it?!?!?!? is it??????
ok, just one more thing.
- Here is some unflavored pop rocks candy I'm just going to place on your tongue right here.... to let sizzle and pop a little bit. There.
- And then oh I forgot, one more electrical current on your cheek to make a little buzzing now and then.
- oh and we'll occasionally hit you on the side of the head with a hammer too just for fun - watch out for that
Most of these are completely randomized (except for the constant aching currents). You may feel all of them, several all at once, or none, in completely random patterns, lasting for several minutes or seconds, over and over again, or not at all while you are here. Good luck to you.
And now that you are all hooked up and feeling the pain of trigeminal neuralgia, the real fun begins:
You can now choose between several specialized torture chambers to complete and personalize your horror experience or we can randomly choose for you between the following options OR you can cycle through them all for the optimal House of Horror PAIN Experience:
1. The Helping-Grumpy-Kids-With-Homework Torture Chamber
2. The Fighting-Whining-Children Torture Chamber
3. The Going-Over-Finances Torture Chamber
4. The Going-Shopping Torture Chamber
5. The Driving-with-Kids Torture Chamber (optional Driving-in-Traffic add-on)
6. The Trying-To-Think-About-Anything Torture Chamber
ok, you'd like to cycle through each of the torture chambers? Excellent choice, that will give you the optimal House of Horror Pain Experience. Your torture chair is equipped with automatic wheels that will take you through each of the chambers and then bring you back to the entrance where an assistant will disconnect you from the device and magically erase all of the painful effects and you can then collect your personal belongings and go about your day.
Thank you for visiting Kristen's House of Horror's! We hope you enjoyed your visit! Be grateful that you can leave this experience behind and hopefully never ever come back again. And we hope you have also gained some insight and understanding.
In honor of upcoming Halloween, and since I am constantly asked what my Trigeminal Neuralgia feels like, I thought I'd give everyone a fun little scare and welcome you to my own personal horror and let you into my virtual head where you can experience it all firsthand and then leave without ever experiencing it again! Lucky you! Come in, come in! I won't bite! ahahahah.
Enter at Your Own Risk!
All Effects Are Magical and Temporary or your money back - Guaranteed!
(Now please sign this consent form that you will hold none of us liable for any and all lingering effects and or terror that may be a result of this experience. Thank you. You may now continue.)
Please enter one at a time, watch your step, that's it, leave your personal belongings at the door thank you. Yes, you are now finally entering the Kristen's Little House of Horrors.
This is a bare cold semi-lit warehouse room like a scene out of The Walking Dead. A single chair, much like a dentist's chair is in the middle of the room, with a metal tray next to it filled with odd contraptions and needles and sharp pain inflicting devices. The legs, arms, and headrest of the chair have straps. There is a single light bulb hanging on a string down above the chair.
Please, sit down. Make yourself comfortable. Or as comfortable as you can.
You sit.
Your arms are tied down. Your legs are tied down. Your forehead is strapped to the headrest.
This is merely for your own safety and for the safety of those around you.
ok. I now need your verbal consent that you are ready to proceed. yes? would you like to muffle your screams, yes or no? no? ok then.
- We will first tape this electrical impulse wire straight across your cheek which will direct a steady ache deep in your cheek bone. There.
- Now, we are going to inject another one deep into your ear to cause a terrible constant ear ache.
- Just a second while we set up the needle darts to periodically shoot into your ear drum. There... we... go.
- And then, hmm... this one's tricky... this is a metal clamp with sharp teeth that will randomly clamp the outside of your ear.
Alright.
- Now, we're going to take this tiny needle and slide it up in between the skin and the bone right here on the side of your nose. Yes, feel free to moan, groan, or scream if you feel the need. That's no problem at all. Go right ahead.
- And we will insert another needle up here along your eyebrow.
- And put one right going right across lower eyelid.
- And then here we're going to put another randomly clamping metal clamp on your upper eyelid. Ah, perfect.
- And these eyedrops will make it feel like your eyeball is going to explode. Very good.
- Now that we have those in place, we will now have these hypodermic needles randomly timed to be stabbed in your face, right there across your cheek, in the roof of your mouth, in your upper lip, in your lower jaw, in your temple and in your jaw joint.
- ok, and now open your mouth please and say ahhh? no just kidding no need to say ahhh... we will now be performing root canals on each and every tooth on half of your mouth .... without anesthetic. Yes I'll just slide this in to keep your mouth open. Please stop screaming now, thank you. Remember there won't be any lasting effects from this, it is purely magical and just for fun. Isn't this fun?!?!?
Yessssssss...... drills please................. there, that isn't so bad, is it?!?!?!? is it??????
ok, just one more thing.
- Here is some unflavored pop rocks candy I'm just going to place on your tongue right here.... to let sizzle and pop a little bit. There.
- And then oh I forgot, one more electrical current on your cheek to make a little buzzing now and then.
- oh and we'll occasionally hit you on the side of the head with a hammer too just for fun - watch out for that
Most of these are completely randomized (except for the constant aching currents). You may feel all of them, several all at once, or none, in completely random patterns, lasting for several minutes or seconds, over and over again, or not at all while you are here. Good luck to you.
And now that you are all hooked up and feeling the pain of trigeminal neuralgia, the real fun begins:
You can now choose between several specialized torture chambers to complete and personalize your horror experience or we can randomly choose for you between the following options OR you can cycle through them all for the optimal House of Horror PAIN Experience:
1. The Helping-Grumpy-Kids-With-Homework Torture Chamber
2. The Fighting-Whining-Children Torture Chamber
3. The Going-Over-Finances Torture Chamber
4. The Going-Shopping Torture Chamber
5. The Driving-with-Kids Torture Chamber (optional Driving-in-Traffic add-on)
6. The Trying-To-Think-About-Anything Torture Chamber
ok, you'd like to cycle through each of the torture chambers? Excellent choice, that will give you the optimal House of Horror Pain Experience. Your torture chair is equipped with automatic wheels that will take you through each of the chambers and then bring you back to the entrance where an assistant will disconnect you from the device and magically erase all of the painful effects and you can then collect your personal belongings and go about your day.
Thank you for visiting Kristen's House of Horror's! We hope you enjoyed your visit! Be grateful that you can leave this experience behind and hopefully never ever come back again. And we hope you have also gained some insight and understanding.
Happy Halloween!
Tuesday, October 8, 2013
Teal for Trigeminal Neuralgia Awareness
Yay for TN awareness day! My sweet daughter really wanted to support me by wearing teal and my husband willingly wore the button I bought for him.:) I tied ribbons on our trees and wore my TN super hero shirt, even though I didn't really leave the house.
Also, through the miracle of the internet and one of the support group pages on facebook, I was able to connect with another trigeminal neuralgia sufferer who lives just one city over from me! I'm not alone! Hallelujah!! She decided to have an honorary dinner of soft foods for TN day (since chewing often causes pain for those with TN) and she invited me over to join her and her family. So nice! It was so great to meet her and talk to her for awhile. She is trying a new experimental physical therapy treatment here developed for TMJ disorder and is having some success so I'm excited to see how that turns out for her. Her TN is complicated by also having lifelong narcolepsy so she can't take the typical medications that I've been trying. It was very interesting comparing symptoms and what we've been through. So many similarities and differences. Everything is so individual. Trigeminal Neuralgia is a beast that likes to take your little brain and just storm through and hack away at it - but everyone gets it hacked at differently. Ugh.
And we all describe our pain and live through our pain the best we can and try to do the best we can and we can't really compare ourselves one to another. It's hard not to. I really struggle with that. I know my pain is not as bad as some and then I still can't figure out why I can't handle it as well as some other people seem to be able to. But then I really don't know how bad their pain is. Perhaps we are just talking about it differently. Perhaps our medications are just affecting us differently. Perhaps my other conditions are affecting me in a way I am not giving myself credit for. Perhaps I should be more patient with myself. Perhaps. I really don't know. I can only do what I can, I guess. And try not to compare in any way. I'm just doing the best I can. Oh, Please don't judge me... and I will try my hardest not to judge myself.
Monday, October 7, 2013
Happy International Trigeminal Neuralgia Awareness Day!~
Today marks the first ever International Trigeminal Neuralgia Awareness Day and so of course I have to bring this to your awareness! This has come to pass through the hard work of a group I have come to admire on facebook, a small group who has called themselves the TN awareness fighters who themselves suffer from the condition. They have spent countless hours over the last months in this past year organizing and emailing, writing letters, making calls and whatever else they can to bring this awareness day into reality. They have sent a petition to the World Health Organization with over 10,000 signatures asking that Trigeminal Neuralgia be added to the list of new considered Health Topics which means it will be considered for funding and research with the WHO organization. For the awareness day, we now have an awareness color and ribbon and will have buildings and towers and fountains lit up in Teal for awareness. And they've designed photos to use for facebook backgrounds, t-shirts on zazzle.com, posters, mugs, buttons, (with profits being donated to the Facial Pain Research Organization). It's amazing!
But let me just share two stories I heard just the other night to illustrate why I think awareness is really important. One was about a person, a grown son of a TN sufferer went to the Dr and saw a nurse practitioner and was telling her about his mother with trigeminal neuralgia and the upcoming awareness day. The NP told him she had never heard of that. Never heard of it. So he explained the symptoms to her. She said she thought that sounded like something someone had made up to get on disability. Made up?! Ok.Then, the same night another TN sufferer vented that she was working at her job as an ER nurse and told them about the awareness day coming up on Monday. These nurses proceeded to make fun of the TN awareness day and the people who come in with the pain of Trigeminal Neuralgia into the emergency room seeking relief. They were making fun of people in excruciating pain. They were laughing about it. They obviously had not idea what it was really like. They didn't get it. How can people like that even work in a profession where they claim to help heal people?! It's mind boggling.
This is why we need more awareness. We need more nurses of all kinds to know what it is and to take it seriously. We need Drs who know how to treat it. We need better treatments that actually work. We need research. We need people to be aware and to be compassionate. Please just be compassionate. And someday, please, we need a cure.
I can't live everyday of my life in pain.
No one should have to live like this.
And I talk to people and I read these stories and I know my suffering is considered a milder case of this condition, on the milder side at least, which just seems almost laughable considering what I go through at times. It's hard to even comprehend. This pain is no joke.
Wear some teal and tell someone why.
Tell someone you know about Trigeminal Neuralgia.
Change your facebook profile to a TN photo.
Share a TN photo or infographic.
Look up Trigeminal Neuralgia (classic and atypical) and become more educated.
Be extra compassionate towards someone today.
(bring me cookies? - kidding.)
You never know what effect you might have.
Thank you.
(and thank you to all of you who have already done any of the above to show your support to me and others who are suffering from this. I can't even really express how much it means to me. Really, thank you so much.)
Check out these links for more info or google search. I regret that I can't link to all the really moving personal stories that have been published in relation to the awareness day. It's amazing:
www.tnawarenessday.com
www.tnnme.com
http://www.cnn.com/2013/10/07/health/trigeminal-neuralgia-awareness-irpt/index.html
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