6 months post op

Well, hello. I intended on writing more in depth about my experience with my MVD surgery. I even started a post in August. But, here we are. I am 6 months post op next week. I guess I will just give an update on where things stand now, although I feel like it's such an incomplete picture because the recovery has been such a journey. But I guess it's better than nothing? Right?

So, here we go. I'll list each thing separately and just give kind of a status report of how that aspect is right now, maybe as compared to what it was before.

Trigeminal Neuralgia
1. Type 2 TN (constant aching) - I no longer have constant aching pain in my face. Sometimes I get a similar kind of pain but it doesn't last very long. For this pain I was only given a 50% chance of a 50% reduction in pain so this is pretty amazing!!

2. Type 1 TN (jabs and stabs) - I still get jabs and stabs of a similar nature to what I had before. Probably every day. Perhaps a little less severe. For this type of pain I was given an 80% chance of complete relief. I was told at my 4 month follow up that I could just be in the 10% that get some relief but not total relief. Only time will tell. My neurosurgeon said we need to wait the full 12-18 months recovery time to know. It could continue to improve, or this might be all I get. Right now, it's still pretty wonderful to be in that 10% (the other 10% don't get any relief at all from surgery).

Geniculate Neuralgia
3. This is the deep ear pain I was having, that also kind of encompassed both types of pain - deep aching as well as stabs of pain deep in my ear. And the pain has followed a similar recovery pattern. I still get some occasional jabs and stabs but I don't get the kind of constant aching that I was having before.

4. Migraine - this is the miracle part. This surgery was not expected to have any affect at all on my migraines. My migraines were usually on the opposite side of my head from the TN side we operating on, and he said that physically speaking, they are not related. But my migraines are significantly improved!! At least so far in my recovery (and not including the obvious surgery side effect of terrible head pain for the first few months), I have gone from 20+ migraine days a month down to about 4. I'm not positive on the number now because I don't even keep track. I still have them, and they hit me and I think, oh yeah I remember this awfulness. But then, the next day it is usually gone and/or I can take medication and it usually takes care of it! Like normal people migraines! It's amazing!!

5. Eye pain - it was never really clear whether my eye pain was related to the migraines or the TN, but it has improved a lot. I still get some of it, but not as severe or for as long.

Surgery Side Effects
6. facial Numbness (from messing with the trigeminal nerve to move the compressions) - on my face I have partial loss of sensation across my cheek, eyebrow and nostril and in my mouth, my front teeth on the left as well as the left side of the roof of my mouth. I usually don't notice it much. After the surgery and for the first couple months I had no sensation or taste on the entire left side of my mouth, including my top lip, and that was very annoying. But I was very much relieved when most of that sensation (and taste!!!) returned. It is possible this could continue to improve as well for the 12-18 month recovery time period. Just have to wait and see.

7. Head numbness (from cutting the nerves in my scalp to access the surgical site) - So, at first my entire head was numb. All of it. Both sides (I don't even know why). Then over the first few months of recovery, the sensation on the right side returned (with a progression from weird tingly and hypersensitivity gradually back to normal), then the top of my head, then the back of my head, and finally the top part of the my left side. I am left with numbness mostly just in a section of my head behind my ear (by the incision) and the top half of my ear (weird).  My surgeon says it is likely that this numbness is permanent. Only time will tell, but it's probably not going to come back. Not a big deal, really. I usually only notice it when I get my haircut or someone else is touching my head, or anytime I pull a hat down over my ears I am reminded that I can't feel most of my ear.

8. Surgical site/incision pain - This is actually probably the most painful thing I still deal with and that's probably because it's the most persistent. I still have a lot of aching and tightness. Feels sort of like someone is grabbing a section of hair right at the incision line and is yanking it really hard, pretty much constantly. I do still also get some stabs of pain extending from the top of the incision line up my head and also burning heat sensations. Those are getting better, less frequent. Oh and when I raise my eyebrows I can feel it pulling my scalp at the incision. Anyway, I forgot to ask about the incision pain at my follow up, but I assume that this usually keeps getting better over time. We shall see!!

9. And as a note of interest - my hair has filled in the incision line pretty much completely. I can't even move my hair over to see it, it's all grown in. This is both positive and negative. It's just weird to have a major scar like that and something that I can feel all the time (because it aches and pulls) but no one else can see it. I no longer have my visible battle scar! The only way anyone would know (unless I told them) would be an xray or other scan of my head, because I have acrylic bone cement filling in the hole they drilled out. I'm not positive but I think it's about the size of a half dollar. Anyway, I was surprised my hair grew back right over the scar line. My hair also grew back over the spots that were bald for awhile from the metal halo stabilizing frame that they screw your head into for the surgery. So that's good.;)

10. Other side effects that were more short lasting - I lost my voice for about 2 weeks post op ( from working on the vagus nerve, I believe). I was dizzy and off balance for probably a couple months. I think I started driving again at about 10 weeks post op. I can't even remember what else.

11. Other side TN - I don't mention this very often, because it just feels too complicated to mention, but I have also started to develop some TN and GN on my other side as well. It's been a couple years since that started. But right now it is still less severe than even what I am left with from my surgical side so I am nowhere close to being ready to decide to do surgery on that side, although if it were to worsen that is an option I have discussed with my surgeon.

12. The only activity restrictions I have now are: no jumping on trampolines and no roller coasters and rides until the 1 Year mark. And I should be careful to protect my head with other things where hitting my head is a possibility. So I'll probably skip out on things where falling and hitting my head are possibilities for a while yet, especially if not wearing a helmet (roller skating, sledding, stuff like that). There's the bone cement that could possibly be dislodged, as well as the padding between the nerves that could be shifted out of position, as well as just needing to let the brain and cranial nerves heal from the trauma of surgery. I don't think I want to risk any of that.

So! That's where I'm at. Given all of this, maybe you can see why it's kind of complicated to answer if "my pain is better" - haha.  But I am doing better, all things considered. I feel like I am a human again and not just a zombie. I am sleeping at night. I can exercise. I am off all of my medications (except my migraine abortive that I can take as needed). I would have to write another whole blog post to talk about the emotional aspect of this surgery and recovery so I guess I will leave it at that for now. A MILLION THANKS TO EVERYONE THAT HAS SUPPORTED ME!!!!  Really. I just don't have the words to thank everyone that contributed financially, sent me comfort and support, listened to me vent and complain (mostly on fb), and perhaps more than anything, just not giving up on me. Sometimes, all you can do is sit and wait through the storm. Sometimes the storm never even ends in this life. Thanks for braving this storm with me.

A little Q & A about my brain surgery

For good or bad, I am operating under the assumption that most readers of this blog are following me on some other kind of social media and already have some idea of what's going on with us, but just in case, here's a little summary.

In May, I went for a consultation with Dr Linskey at UC Irvine Medical Center in CA. He said that he could see vascular contact with my trigeminal nerve and that I was a candidate for MVD surgery, despite being told otherwise by 2 neurosurgeons and various other Drs here in UT. Two weeks later, we made the decision to move forward with surgery and scheduled for July 21. I had a lumbar puncture to rule out MS, which was clear. And this past week I had blood work, chest xray and EKG.

We have had an online fundraiser to help with the costs and we have been overwhelmed with gratitude for the generosity of so many friends and family. It's been amazing. We have to arrive in CA for pre op appts 2 days before surgery. Then the neurosurgeon requires that we stay in the area, not more than 20-30 min away from the hospital, for 14-15 days post op in case of complications and to have follow up visits. This means we will be in CA for about 2 1/2 weeks total. Then we will probably need to travel again to CA for follow ups at 3 months, 6 months, a year and possibly every year thereafter (I'm not positive on that.) So, there are a lot of costs. We are thankful to have insurance though, which means we will only have to meet the $7000 out of pocket maximum. For a surgery that runs close to $150,000 in total cost, this is a huge blessing.

Anyway, I've had a lot of people ask me questions and I imagine a lot of questions are being thought but unasked, so I thought I'd address most of the ones I can think of in a blog post. Hopefully this covers most everything.

1. What is an MVD? What will they do?

MVD stands for microvascular decompression. The neuralgia is being caused by blood vessels compressing, rubbing, or pressing on the cranial nerves (in my case he will look at 4 cranial nerves, #5, 7, 9 and 10). The surgery will remove a small section of skull behind my ear, they go in and look at the nerves near where they are exiting the brain stem and remove any blood vessels away from the nerves. They pad the arteries from the nerves with teflon padding. The veins are cut away and cauterized. They then replace the piece of skull with "bone cement" and stitch everything back up.

2. Why do you need an MVD? Aren't there less invasive surgeries or treatments for trigeminal neuralgia?

TN is a progressive disease. The longer the blood vessels rub against the nerves, the more damage is done over time. Because of this, experts in TN say that MVD's are most effective if done in the first 7 years since onset of symptoms. I'm already 4 years in. I have tried over 30 medications, and also done other procedures which haven't helped. There are less invasive surgeries but they work by damaging the nerve to prevent it from sending pain signals. They do not remove the cause of the pain, the blood vessels. And so the nerve heals itself over time and symptoms are likely to recur. Plus I had other neurosurgeons tell me I wasn't a candidate for any of those surgeries anyway. Then after you damage the nerve in these surgeries, if you then decide to try an MVD later, it is less likely to be successful due to all the additional damage done to the nerve. If there are compressions on the nerve, an MVD is the only procedure that removes the cause of the pain.


3. Will you be pain free after this surgery? Will you be fixed, all better?

This is the clincher. Even though MVD removes the vessels from compressing the nerve, it is still not always successful. It is very individual. Sometimes the nerve just doesn't heal well from all of the damage from the compression. Sometimes there are complications which make things even worse after the surgery. Sometimes the veins that were cut (if there were any) grow back and the pain returns. Sometimes the teflon shifts and the artery comes in contact with the nerve again. I don't even know all what might happen. It just doesn't always work. There are also 2 types of pain with TN: the episodic shocks of pain, and the constant aching pain. Not everyone has both types, but I do. The surgeon says there is an 80% chance of resolving the episodic shocks. But only a 50% chance of a 50% reduction in the constant pain. And then, in my case, I also have the chronic migraines, and he doesn't think they are related to the TN and surgery is not likely to have any effect on them. So. Even best case scenario with these chances of success, I will not be pain free. Almost guaranteed. And worse case scenario is just too scary to think about right now.... But that is the reality we are faced with. 

4. So why are you even doing this risky, complicated brain surgery with an open craniotomy and the chance of complications, and a definite long recovery if you don't even know if it will work?

The million dollar question. The simplest answer I come back to again and again when I ask myself this question is this:
I don't know what else to do.
I have to try.
I don't know what else to do.
Because I can't keep going with no help.
I have to try.
Because I'll never know unless I do.

Also I remind myself that TN is a progressive disorder and will only get worse over time. I have a 7 yr window where the likliehood of success of this procedure is the best, so if I'm ever going to do it, now seems like a better time than just waiting. It just seems to be a step that I need to do, even if it only results in a reduction in some of my pain. Who knows how that might be for me? There is no way to know. It may not be any better for me, in terms of functionality or outlook, but it might help.... 

Also I feel like I should add that we have fasted and prayed a lot about this decision and, although I have not yet received the positive confirmation in the way *I would have liked*, my strongest impression is that this is a necessary step. I don't know for sure that this will be successful for me, but I just know it's something I need to do. So we move forward, step by step, taking one piece at a time, in the way that feels right. It's all we can do. 

5. What is the recovery like?

Full recovery takes 12-18 months. I will have activity restrictions until I get cleared at 1 year. They don't want you to risk hitting your head or anything like that. Other than that, it depends on how the recovery goes, but it is definitely a long painful road of recovery. Dizziness, headaches, and nausea are very common for weeks. Most people say it takes at least a couple months before they are able to do very much. If there are complications, then of course recovery is even more . . . complicated. Numbness in the face and scalp is common. Sometimes there is some paralysis as the nerve heals. Recovery and possible complications are scary. Mostly because it's just so unknown. It's kind of like childbirth, you can hear all the stories, the good, the bad, the dreamy ones, the nightmare ones, but when it comes down to it, you really have no idea - AT ALL - what it will be like for you. You just have to do it. I am equally freaked out by the really easy recoveries I hear some people have, as I am the scary stories I hear about the really hard parts. Because guess what?! None of them is me. I would rather know everything I can and be prepared for the worst. But that's just me.

6. Why do you have to go to CA for this? Aren't there surgeons who do it in UT?

There are surgeons who perform this in UT, but from my own experience and from what I've heard, most will only do it on patients who only have the stabbing shock type of pain and who have clear compressions visible on MRI (Drs here said I didn't have compressions, even though Dr L said he could see them) - at any rate, I was not deemed a candidate for surgery. Also, although Dr L was very adamant in reminding us that he is not the only surgeon qualified to do this, he did give us some qualifications we should look for in a surgeon to do this. A few that stand out to me are that they should be members of the Trigeminal Neuralgia Association (there aren't any in UT), they should have been trained directly under Dr Janetta who pioneered the procedure (none in UT), and they should perform at least 5 MVD's a year, which is hard to find (he does about 50). He even said himself that he doesn't know any surgeons who meet this criteria in UT. So, if I would have to travel anyway to find a highly qualified neurosurgeon, I figure I might as well travel to one that I know is one of the top experts in the field of TN, and who has performed this surgery on other people I know personally. 

7.  So how do you feel about all this? Are you excited, nervous, freaked out?

Here's the thing. When the words Trigeminal Neuralgia were first brought up to me in Aug of 2011, I started researching whatever I could find. I quickly bought the book Striking Back, which is published by the National Facial Pain Association and is kind of considered the TN bible. I read about all the common medication treatments and available surgeries and treatments. I think I have always known that if MVD were a possibility for me, I would do it. But I had 2 neurosurgeons and 3 neurologists tell me I wasn't a candidate for any surgery. I gave up on it. It was over a year ago that I started hearing about Dr Linskey, other people's good experiences with him. I knew he was on the board of the Trigeminal Neuralgia Association and that he helped some patients who weren't helped by anyone else. And at one time, over a year ago, I actually had someone offer to help pay for the costs to get me to CA to see him. So I thought about it a lot then. We had different insurance then that didn't cover any out of state Drs, so it wasn't really a possibility. Then I had a year of breast issues that culminated in surgery this year (still having some pain from that surgery), which took precedence over looking into this further. But then we were able to change insurances April 1 this year. The person who had offered help was no longer in a position to do so, but it was his offer that had started the process of thinking through what I might do, if given the opportunity.
So, here I am.
I am scared, nervous and unsure if I am doing the right thing. It's hard for me to talk about. There are so many components. Getting through the surgery itself (lots of risks), possible post op complications, dealing with a normal recovery, wondering if it will work, and how soon I will know if it worked, worrying about leaving my kids in the care of someone else for nearly 3 weeks, worrying about how much they might be worrying about me and this surgery, all of the logistics: making sure the kids have ways to get where they need to be, needs taken care of, travel and lodging for me and Zac, Zac working while we are staying there, financial concerns, longer term post op worries, worrying about letting people down (even though I know I shouldn't, it's still there), people who have contributed to our fundraiser to help make this even possible, wanting this to be a successful, miraculous story, wanting or wishing to be "inspirational" - whatever that means - I feel a lot of pressure in it all, but just feeling too much like I am a failure in all of it, not knowing if I am strong enough to handle any of this, and do I have enough faith or any at all. So much of it I can't sort out in my head, and I don't have the answers or know even where to start. I don't even know if all of that begins to scratch the surface. But that is some of what goes through my head when someone asks how I feel.

Well, this post has probably gone on far too long anyway. But I hope this answers some of the questions some of you might have. Feel free to ask anything else you'd like and I will try my best to answer. Words of encouragement, love and support as well as prayers and good thoughts are always always welcome. Thank you again for reading and being there for me through all of this.
And a HUGE thank you to everyone that has helped out with financial contributions. Every little bit helps in relieving some of the burden and we are so grateful. Thank you.

Some pictures and illustrations: 

This is what the incision will look like:

Which will heal to be barely visible once the hair grows back: 

This shows where the nerve (Orange) exits the brain stem and the artery nearby (red). That's where they will be operating: 

Another illustration of where in my head they will be operating and the pathway of the nerve as it supplies sensation to the face (that's where my facial pain is. Kind of everywhere those branches of nerve goes): 

And finally here's my "Team Kristen" TN support picture that you can use in all your social media to show your support:  :) 

We have a fundraiser!

Just on the off chance that someone might be reading this who isn't on my social media, I wanted to share this here too. We have set up a YouCaring online fundraising account to help defer some of the cost of going to CA to see a top expert TN neurosurgeon. Ill continue to post updates there if you are interested in the details. Any amount of help we can get can alleviate some of the burden this whole thing places on our family. It's a step in the direction we feel like we should at least pursue right now. Thank you so much for all your love, support and understanding. Some of you have been reading this blog since 2007! It's been a crazy ride thus far! Thanks for being my traveling companions.:) And feel free to share this fundraiser thing far and wide. Please! Thank you!  

http://www.youcaring.com/medical-fundraiser/help-kristen-case-conquer-trigeminal-neuralgia-/338918#.VTkRTakG8sU.mailto

NPM: Poem #7

Well, I'm feeling a bit discouraged by the lack of feedback on the last poems I've posted, so I probably won't continue this little project. I'm not in a good enough head space to post my silly poems and not get any response, as dumb as that might be. Which I probably should have already known and anticipated before I even started, which would have reminded me that this wasn't a good idea for me right now to do this. But yeah, I guess I didn't. 

But anyway here's one more, at least. Semi recent. Written from bed on a bad day. 

Time 

ticking by 

and here I am 

still here

still here 

Days 

going by 

and here I am 

still here 

still here 

I haven't moved 

barely breathed 

still here

still this 

It never leaves 

Here I am 

breathe in 

breathe out 

breathe in 

It's all I do

My life 

passing by 

I watch it go 

and here I am

still here 

still here 

still here 

National Poetry Month: poem #6

This is one of my all time favorites. It comes to mind often. I guess I have struggles in keeping perspective... ;) 

Walking Backwards 

by Kristen 

retracing every step
slowly, slowly
I know I left it here
somewhere
where did I have it
last?
going back in time
remembering
trying to remember
just where it is
I left it.
Stumbling slowly
slowly
walking backwards
searching in every place, every corner
trying to find, discover
where it is that
I lost
perspective.

National Poetry Month: Poem #5 Easter

On Easter Sunday, I thought I'd share this poem with you. It's inspired by the bible story of The Prodigal Son, which is a story of returning Home, turning away from sin and being welcomed again with open arms. And that, to me, is the story of Easter. That because of Jesus Christ and what He did for us, we can return home again. We can be forgiven for any wrong we have done. We can be healed. We are always loved and always welcomed to our Father's arms. This is what I believe. Happy Easter. 

prodigal
by Kristen 

when you come, I will
put on the bandages
and I will bring you soup
in bed and I won't ask
you where you've been and
how you've become so
worn and wounded
Just come home and I will
help you heal
Come to me and I will love
you

National Poetry Month: Poems #2, #3, #4

How about some more poems for National Poetry Month? I think I'm going to shoot for 30 poems this month - we'll see! 

 I've been miserable with a combination of a possible cold and allergies this past week so these 3 seem apropos. I guess my allergies were a recurring theme in my poetry.;) 

(Also I can't decide if I want to divulge when I wrote stuff. I don't know if I want people to speculate too much about what I was writing about, so I'm thinking maybe I'll just keep the dates to myself. Leave you guessing. Maybe it will be obvious which ones are more recent, as I hope maybe I've matured a little bit since middle school. But maybe not. Hahaha). 

Hope you enjoy these! 

Self-Esteem During Allergy Season 

By Kristen 

it's more than make-up
and hairstyle and shoes
it's more than confidence
and clothes
It's hard to feel good
about what I possess
inside
when it's all dripping
out of my nose.

DRIP (Lamentation of a Sneezer)

By Kristen 

Don't you sometimes
want to let your
nose just drip
and drip
without even trying to sniffle it
or catch it
with a well-worn, well-used
tissue,
crumpled, torn and disgusting
Don't you sometimes
want to let it
drip
when no one else it around
(after all,
who's to know?)
when your nose is red
and raw
and sore
and it feels like it's going to
explode
at any minute
oh, how much better it would
be to let it drip
than to go through the
agony
of wiping it.

sneezy

by Kristen 

Just call me sneezy
and I’ll share my life with you
I sneeze and wheeze and sniffle and cough
the whole entire day through
Just give me a bunch of tissues
and I’ll give you a thought to think
I promise you I’ll use them up
before you have time to wink
“Bless you!” “Bless you!” “Gesundheit!”
good grief
all the blessings in the world
won’t bring me my relief
So I sneeze and wheeze and sniffle and cough
the entire day through
while you bless me to your hearts content
and feel glad this isn’t you
So give me boxes of tissues for Christmas
I’ll be very happy
watch my nostrils quiver and queasy
have a nice day
just call me sneezy.

Poetry Month

So I became aware that April is National Poetry Month! Whee what fun. And I've just sort of decided that I would post some of my poetry for you all in celebration. Yay for you! I don't claim to be a wonderful poet but, I guess you couild say I was known in the High School Literary Magazine as a prolific poet. In other words, whatever I may lack in quality, I make up for in quantity. At least I used to. Now I write less frequently. But anyway. To start off, here is one of my more recent ones. I have been struggling a lot lately, feeling stuck in a rather dark spot. I don't really feel like expounding much more than that.
But here it is (kind comments very much appreciated!! please let me know someone is reading this):

Waiting through the dark
by Kristen

I guess I cannot be rushed
I can't be forced
I cannot.
Although all I see is darkness
all I feel is pressure
all I am is small
and closed
and cold.
When the time is right
I will feel it
I will begin to push my
way upward
through dark, still, damp
soil
I will feel myself begin to reach
towards warmth
and light
and freedom,
where I will be bright
and lovely
and good.
I will be.
I feel it.
But I cannot be rushed.
I cannot be forced.
In my time . . .
I trust it,
I will be more than I am right now.
More than just a seed
here in the darkness,
waiting.
I will grow.
I will become.
I will wait here in darkness,
For spring.

Your Story, My Story

"But behind all your stories 

is always your mother's story,

 because hers is where yours began.” 

- Mitch Albom

It's an interesting thing having your kids grow up. It's been mostly a good thing for me. I don't really pine for the days when my kids were little. Oh, they were so squishy adorable and I loved it. But it was also very very hard. I am mostly just very happy that my children are all potty trained and sleep through the night and can talk to me in complete sentences (most of the time). And they can take their baths and showers by themselves and most of them do it without prodding! They can get their own food when they need to, and can get their homework done mostly unassisted. Honestly, I can't imagine dealing with the constant pain I have now with my kids any younger than they were when this started. Although it threw me for a major loop and put some major kinks in the plans I had for this stage of my life (and continues to do so), I am nothing short of grateful that Elisabeth was starting kindergarten when my pain started and that I wasn't responsible for anyone's care full time.

But this is an interesting thing, letting your kids gain their independence and not only that, but suddenly they have their own online lives and presence. They are beginning to own their own story and all of our roles in the story shift ever so slightly, sometimes not so slightly. No longer is it my prerogative to share (and overshare) all the cute and adorable things they do, nor the embarrassing, frustrating, and hair pulling things that they do. This is hard for me. I've had this blog for many years - 7? 8? I'm not sure. And while I've become quite the blog slacker, I still find myself being pulled back in to make sense of things in my life. Or then there's facebook too. And instagram. Yes. Some people seem to be a little bit better with allowing their children more privacy and power in deciding what of their lives should be shared, and what shouldn't. This is an ever evolving process for me.

I was driving home with Abigail one day and we were talking about this. We had just spent a couple long hours waiting through the long lines at the DMV only to get to the counter and discover that I had needed to bring documentation of our new address to complete the application and I didn't have it. Ugh!! My fault that all of this time had been wasted. And, here's the tricky part, this was the 3rd time we had been at the DMV waiting in lines to take the test for her to get her driver's learning permit. 

So, she says, don't tell anyone I didn't get my permit - again. 

But you see, I tell her, this is also my story. It's my frustration that I didn't bring the necessary forms. It's also my time wasted in waiting for no good reason. Compounded by the fact that this wasn't the first time we had been there to try to do this.

So, what is her story to tell and what is mine? Can I tell mine without also telling hers? 

And it doesn't stop there, of course. Like this quote says, our stories always come back to our mothers'.  Because when did our story ever begin and hers end? 

Her pregnancy was my prenatal life. Her story of my birth is my birth story. Everything I do, affects her too. Everything she does, is part of the story of my life. Because she is my mother.

And I am her mother, my daughter's (and my other children, of course).  Her story is my story. Her successes are part of my success. Her tears become mine. We are forever entwined, our stories overlapping. Even when she is truly her own and I am just a background figure, it will remain thus.

This is an interesting time of stepping back and letting her determine her own story to tell or not to tell. Sometimes I am amazed that I am here, at this point in my own story. Where we are shifting our roles, and figuring out this intricate relationship between what is mine and what is hers. And what our story will become.

40 and Fabulous

Well yes, everybody, today is my 40th birthday! Happy Birthday to me! I have to admit I've been struggling a little bit with this turning 40 business. I know, yes I know, that age is just a number, and we're only as old as we feel, and who cares about birthdays anyway and blah blah blah.  But . . . it's just weird. How did I get this old? And do I really feel this old? (actually, in some ways, yes.) And do I really look this old?!? (again, unfortunately, probably yes.) Ugh.

Truth is, sometimes I really feel like crap. Sometimes I think, only 40? Seriously?!? I have gained weight over the past year that I am really not happy about. And I hurt. Dangit, I just hurt. All the time. And I've decided to grow out my hair color, due to cost and upkeep and all the chemicals and neurotoxins in hair dye. It's an interesting experiment to see how it goes. And I have quite a bit of gray! It's rather shocking and hard to get used to. And it's easy to start to feel a bit down about it all (a bit down?!? That's hilarious). And how am I spending my birthday so far? Calling and waiting for calls back from Drs, for another freaky issue I'm having that is causing me a lot of anxiety. So. To combat all this worry and woe of now being 40, I've decided to buoy myself up by remembering all the things that make me fabulous! HAHA. 40 of them in fact. Because, why not? I need to remind myself that I am, in fact, pretty great at this age.

So, may I present to you, 40 fabulous things about me, or things I've done, or about my life at this point in general.  Most of you probably know these already, but I just need to make a list. Because I like lists. So here you go:

1. I'm lefthanded. That's one of my best qualities.;)
2. I have given birth to 4 beautiful babies, the biggest one being 9lbs 5 oz, and naturally at that! (3 of the 4 were natural, the big boy being the first!)
3. And I breastfed each of them for over a year.
4. I've run in a handful of 5Ks
5. I've been on a hot air balloon ride.
6. I've gone whale watching.
7. I've been white water rafting.
8. And rappelling down a cliff.
9. I served an 18 month mission in Germany for my church.
10. I graduated from BYU with a degree in Therapeutic Recreation.
11. My record for number of books read in a year (since I've been keeping track) is 108 in 2010. I read a lot.
12. I've been blogging since 2007.
13. I'm an avid journal writer, currently finishing up journal #58.
14. I write poetry. I've been working for years on a project to compile all of my poems I've ever written onto a private blog. It's a big project.
15. I play violin. For a few years I played in a community symphony.
16. I like to take a lot of photographs.
17. I like to keep track of things. I consider myself a memory keeper, record keeper.
18. I completed a sprint distance triathlon.
19. I like little tiny things.
20. I've been married to my best friend for 17 years now.
21. I'm not terribly crafty but I've started experimenting with quilling, which is fun.
22. I have kept just about every letter ever written to me.
23. I save stuff. (see #17)
24. It's hard to come up with 40 awesome things about myself.
25. Maybe I'll stop here.
26. ummm . . .  I once went to a concert all by myself and felt brave.
27. I eat lemon cake every year for my birthday. Except for last year when I was gluten and dairy free and could only find a gluten free cake mix that was flavored like sweetened cardboard.
28. I have been to a lot of States. I filled out that map thing on Facebook but I'm not going to go back to look at it.;)
29. I've hiked to the top of Mt Timpanogos.
30. I've hiked in both the Rocky Mountains and Shenandoah mountains.
31. I like canoeing  - and paddle boating.
32. I like zip lines quite a lot.
33. I've been to Yellowstone National Park, Arches National Park, Bryce Canyon, and Zion National Park in UT.
34. I've been to Acadia National Park in Maine.
35. I've been to Mt Rushmore National Memorial.
36. And many National or State parks and forests in VA, CA, IN, UT, and possibly other places too. I should start keeping track, I can't remember them all by name.
37. Oh and I've been to Niagara Falls.
38. I grew up in Northern VA which means I've been to the Smithsonian museums in DC, and the art museums, and Botanical Gardens, and many civil war sites, and presidential birthplaces, etc.
39. Oh and the National Aquarium at Baltimore is one of my favorite places on earth.
40. I've also been spelunking, or caving.

So, you know. Life has been good.
It's good to take some time to remember that. I know I've probably forgotten a lot of things, possibly even bigger and better things than what I have listed here. But, you know, it's hard to think of everything (or sometimes anything) when you're staring at a screen trying to come up with stuff. So this is what came out.

(oh and remember the 100 things about me post I wrote back in 2008? You can click on that for more useless facts and never ending lists about me.) :)

So, in 40 years I've done some stuff. Not huge stuff. Nothing earth shattering or world changing. But let it be known that I am here. I matter and my story matters. What I know, what I feel, the places I've been, the things I've done, they matter. The people who I have affected or that have affected me, all matter.
That reminder to myself is my birthday present to me this year.

ps - as a birthday gift to me, would you leave a comment and let me know that you're reading this? I would love that so much.:) Thanks!!

2014 Year in Review

This time of year is turning into a hard one for me. Reflecting on the past year and planning for a new year both feel burdensome and hard. It is in my nature to keep track of things though, most of you know this about me by now. So it is a yearly tradition to go through my past year's planner where I have most everything written down and then I jot into my journal a list of most of the bigger events of the past year. We've done our share in the past of end of year newsletters and I've done my photo collages for each month of the year here on my blog. I'm not going to do that now. But since I've hardly blogged at all this year, I thought I might share with you the list of eventful happenings. Good, bad, and everything in between. No censoring. No judgment. No trying to glean meaning or lessons, or anything BIG from it. Just here it is. This is all the stuff from the year. 

(just a reminder for new or old readers: I don't use the kids' real names on the blog. Abigail is the 15 year old, Isaac is the 13 yr old, Samuel is the 10 yr old, and Elisabeth is the 8 yr old). :)

January -
- funeral for a good friend of ours from college
- I was continuing to eat gluten free, dairy free, and low tyramine food restrictions
- Had an overnight sleep study
- Had a continuing problem of breast pain and abnormal discharge. Had a couple mammograms and a ductogram (ouch) which didn't show anything to explain my symptoms. It's a continuing issue that apparently has no cause and no treatment. Ugh.
- Saw a Neurotologist (ENT nerve Dr) who diagnosed me with probable Menieres disease
- Did a round of Botox for chronic migraine. Awful awful experience that exacerbated all my existing pain and added even more areas of pain to it.
- Abigail got to work in a recording studio and recorded one of her songs, much to her delight!!
- I had strange throat pain that didn't seem to fit anything. ENT thought it might be nerve related.

- Samuel had some testing done that showed that he might be sensitive to gluten and dairy so he went off of it too. We also had him tested for Celiac's disease, just to be sure, but that was negative, thankfully. 

- Abigail performed one of her original songs for the first time in her school talent show. 

February -
- I started receiving care packages from a group of friends from high school. Random, thoughtful, caring, completely surprise packages that continued to arrive for months and were probably the highlight of my year.
- Zac took Isaac on a winter campout
- Samuel had surgery for his 4th (or 5th?) time getting ear tubes put in and his adenoids taken out
- Elisabeth had her routine cardiology appt for her heart defect. Everything was looking about the same, just continuing on but not causing concern. She'll go back in another 5 years, if I'm remembering correctly. Such a blur.
- She also earned Student of the Month award for her class.
- And she continued taking gymnastics Level 2.

March
- Elisabeth fell off the fence onto a garden  stake and tore her upper inner leg, needing a bunch of internal and external stitches. Worst child injury yet to our little clan, I think. It's left a nasty scar, for sure.
- Abigail performed in her school performance of High School Musical Jr. She was one of the nerds.
- and Elisabeth sang a solo in her school talent show
- Zac ran the 50 mile Antelope Island race
- Samuel turned 10
- We started eating all foods again, so gratefully.

April -
- my neurologist gave up on me, basically telling me to come back when I decided to do the CPAP machine for sleep apnea (which my sleep study actually confirmed that I DON'T HAVE) or do more Botox, which I just can't bring myself to do. Bye Bye Neuro.
- I ended up in the ER for an allergic reaction to an anticonvulsant that the psychiatrist had prescribed to me.
- Elisabeth turned 8 and Isaac turned 13.
- We had a roller skating birthday party for Elisabeth and I skated hard and crashed and got banged up pretty good, but it was pretty funny.
- Isaac ran spring track
- I read and edited a manuscript for a book a fellow migraine sufferer was writing about his experiences
- Abigail had her last violin recital before her teacher moved. And continued playing viola in middle school advanced orchestra. Isaac continued playing bass in intermediate orchestra.

May -
- Elisabeth was baptized a member of our church
- Samuel was awarded Student of the Month for his class
- I ended up in the ER again for unbearable eye pain. They gave me an IV pain cocktail that knocked me out pretty good for about 12 hrs. 
- Abigail turned 15.

June -
- Abigail started voice lessons from one of our neighbors for the summer, which she dearly loved.
- We had a great visit from our friends the Yoders from Michigan. (They were our neighbors at BYU when I was pregnant with Abigail.)
- Samuel and Elisabeth both played spring soccer
- Abigail went on her Pioneer Trek experience
- Zac took Samuel and Elisabeth camping up on a nearby mountain
- I had increased one of my meds and it started increasing my blood pressure in a worrying way. So I had to start coming off the medication (for that and other reasons).

July -
- Zac ran up and down Mt Timpanogos. Yes. He ran up and down the entire mountain.
- Abigail ran in the Freedom Festival 5K
- Weaning down off of all my medications started causing me terrible terrible insomnia where some nights I didn't sleep at all. (At least I think it was from the meds. It did improve after a month or two.)
- we used our summer pool pass
- Abigail went to cross country camp
- Isaac went to scout camp
- Zac took Isaac and Abigail hiking and camping up Mt Timpanogos
- Abigail got to perform her songs in a backyard outdoor concert
- We got our little dog, Harley, a 7 month old chihuahua schnauzer mix.
- and we saw a house we really liked in a neighborhood 2 miles from us and we sort of spontaneously decided, hey what the heck, let's try selling our house and move!
- we took a little daytrip to Ofir, UT out in the Oquirrh Mountains on one of the days when we had to be out of the house for showings.

August
- Abigail went to church girls camp
- We listed and sold and bought our new home in a week's time!!
- our good friends the Hoffman's came out for a visit. (We became friends during the year we lived in Leesburg VA when I was pregnant with Isaac, then we both moved.) So happy to still be friends!
- Took the family to Lagoon amusement park for a day.
- Abigail got to perform the song she wrote on Pioneer trek for 100's of people at our Stake Trek fireside.
- I went to see Wicked, the broadway musical, with my mom and Abigail
- I got my first ever speeding ticket.

September -
- I was officially weaned off of all of my daily meds and I have been ever since. All I have to take right now is Imitrix (a migraine abortive that only works for me sometimes), 2 different anxiety medications, a muscle relaxer, and prescription strength Naproxen. Oh and an anti nausea med. These don't really do anything for the pain very much usually, but I can knock myself out for a few hours when I get desperate for relief.
- Issac ran cross country for middle school
- Abigail ran high school cross country and made the varsity team
- Samuel and Elisabeth played fall soccer
- found out my niece-ster Chelsea is having a baby girl in February!
- we had a family outing to Bridal Veil Falls
- we moved into our new home on Sept 11!!
- I was able to exercise every day for a week. It was short lasting, oh so frustratingly and disappointingly short lasting, but it was a good week.

October -
- Abigail got to perform in another backyard outdoor concert.
- Zac and Abigail volunteered as crew for a couple runners in the Pony Express 100 race.
- had a physical check up. Blood pressure was back down to normal, thankfully. Other things were just depressing.

- Samuel had skin prick allergy testing and has started allergy immunotherapy drops (rather than shots). 

November -
- Free tickets to Utah Symphony
- Abigail got to go on a trip with her cross country trip to AZ, where she got a personal record.
- IEP meetings for Samuel and Elisabeth. We are now 4 for 4 with kids in speech therapy. 
- Abigail started getting weekly performing coaching sessions from a local musician who mentors bands at BYU.
- We got Harley spayed, poor pup.
- and my mom came for a visit. Oh this past year she also sold her house that was only an hour from us (where she and her husband would spend part of their time) and now lives full time 4 hrs away.

December -
- Elisabeth played a baby spider in her school class production of  the play Charlotte's Web
- Samuel and Elisabeth had school choir concerts.
- Isaac and Abigail had school orchestra performances (middle school advanced and high school chamber orchestra)
- we went to a beautiful Live Nativity display/performance
- Zac's grandpa passed away and Zac and I flew to IN for a whirlwind 2 day trip to attend the funeral.
- Harley turned a year old.
- Abigail made it up on the record board for her high school cross country times: 3rd fastest Sophomore Girl on record, and 5th fastest for all Girls!
- Abigail got her wisdom teeth out.
- and we all got sick for Christmas

And as of today, with 3 more days left of this year, I have had a total of 224 migraine days this year, up from 195 in 2013. 
And I've read 37 books, down from 73 the previous year. 

(Those 2 stats just might be related.)

And that was 2014. 

Here we are! Standing at the brink of another new year. 

Thanks for reading, friends. Wishing you all a happy 2015! 

May I live this day

This is another post that I have meant to write for a couple years. With this week being Thanksgiving, I thought it would be an appropriate time to actually share it. This poem is printed at the end of a book I love called "You Don't Look Sick: Living well with Invisible Chronic Illness" by Joy Selak and Steven Overman. I'd recommend it to anyone living with any kind of chronic illness or pain (and I have a copy if anyone would like to borrow it). I copied this poem into my journal (before I bought my own copy of the book) because it really struck me. I am not one to recite memorized prayers, as the title suggests that this is, but I think it would do me well to reread this every morning. It reminds me that I am blessed. Even to wake up every morning and look out at the sunrise. Sometimes just looking out the window has to be enough.
I am blessed.
And I am thankful.
Happy Thanksgiving to all my friends near and far. Thanks for reading...

Matins

by John 0'Donohue

I.

Somewhere, out at the edges, the night

Is turning and the waves of darkness

Begin to brighten the shore of dawn.

The heavy dark falls back to earth

And the free air goes wild with light,

The heart fills with fresh, bright breath

And thoughts stir to give birth to colour.

II.

I arise today.

In the name of Silence

Womb of the World

In the name of Stillness

Home of Belonging,

In the name of the Solitude

Of the Soul and the Earth

I arise today.

Blessed by all things,

Wings of breath,

Delight of eyes,

Wonder of whisper,

Intimacy of touch,

Eternity of soul,

Urgency of thought,

Miracle of health,

Embrace of God.

May I live this day

Compassionate of heart,

Gentle in word,

Gracious in awareness,

Courageous in thought,

Generous in love.

Which is worse?

I had a friend ask me the other day which is worse for me: the migraines or the trigeminal neuralgia? And I have to say, the simplest answer is: I don't know.
But sometimes I think it's important to know that answer. Because I could find Drs that specialize in migraines but may not know a whole lot about trigeminal neuralgia. There are "headache specialist" neuros. I have yet to find a "trigeminal neuralgia specialty" Dr.
But there are neurosurgeons who specialize in the surgical treatment of TN. They usually only operate on typical TN patients with a very specific pain pattern, though, that I don't really have (I have some aspects of it, but I also have other more constant pain which isn't consistent with typical, or classic, TN). So, it is possible that somewhere along the way I could find someone to treat the TN but it may still leave with the migraines. So then what? Would that take care of the worst problem? Especially since the most common surgical treatment for TN rings to the tune of about $80,000. This is a big question.

But I don't know. And then to add to the confusion, I have some pain, the eye pain particularly, that I don't even know for sure which category it falls into. Some people with TN have similar eye pain. Some people with migraine have similar eye pain. And the exploding eye pain, especially when it continues more than a day or 2, is probably the worst to deal with. That's what sent me to the ER last time. But the relentless, day after day after day, throbbing migraine pain gets to me too. I guess I'd say that the TN pain isn't as bad, most of the time. But it's the sharp, stabbing, electrical jolts of TN facial pain that stop me in my tracks, make it so I can't chew or talk at times (thankfully not often), and will bring me to tears. At it's worst, it is completely unbearable. But that is usually shorter lasting. So it's awful. But it ends sooner. Which is worse?

Sometimes, a migraine that is manageable for a day or 2 becomes unmanageable on day 4 or 5, or 10 or 15. The severity of the pain hasn't actually changed, but my ability to cope with it lessens over time. I can only take so much of constant pain. So, yes, the 22 day migraine was worse in some ways than my TN pain. The reality, of course, is that both things happen at once and build and feed on each other. It's the combination that's the killer.

So, if I had to choose to get rid of only one, which would it be? The deadend choices. I don't know. The truth is that they are both debilitating. And are they related? Would getting rid of one help alleviate the other somehow? I wish that Drs knew. They don't.

It's interesting because looking back, I think that I have always suffered from episodic migraines. Maybe a few bad ones a year, I don't know for sure. But I remember in college I had a friend whose mom had chronic migraines. He showed me once the pain diaries she had to fill out, over years, at the instruction of her Drs. And I remember thinking how truly awful that must be. I couldn't imagine having to endure that. Ha. And here I am. But I remember back then getting really bad headaches. I had a really bad episode on my mission that lasted probably a week or more. And I remember getting a few really bad ones as a child, and lying in a dark room waiting for it to subside. And early in our marriage I remember times with bad ones. Like after Zac made homemade cooked salsa. It was tasty but it knocked me out with a headache for the rest of the day (onions are a known migraine trigger). I think now that I have always suffered from some migraines.

Anyway. This pain did not start as a typical migraine though, or anything like the migraines I had experienced in the past. The first incident was terrible searing eye pain in my left eye, that I thought was some sort of terrible headache. But it was so bad, it kept me up all night and nothing helped and I almost woke up my mom to take me to the ER (I was on a trip with my mom and sisters in VA). It was scary to me.
Then a few months later was when the jaw and ear pain started, also on the left side. I thought there must be something going on with either my teeth, radiating into my ear, or my ear itself. It didn't turn out to be either of those. That lasted a couple months and then seemed to go away. Then a couple months later it came back as left eye pain, and into my cheek, plus my ear and jaw. This is when it never went away.  And then sometime after that is when I started getting head pain on the right side of my head, the same spot every time, so I began identifying those as migraines.
And my Drs kept trying to treat my pain as migraine, so I was trying a bunch of meds but I can't remember if I was expecting to help all of my pain, or just the actual migraine one. I don't even know. I can't remember. I don't know if treating them as separate would have helped or not.

So, this is just more babbling. I've got the left eye pain, and the right side migraine going on right now. Plus facial pain. I hate it.
I think I need to find a Dr, just because I start to feel desperate for relief again sometimes - and I guess thinking through this like this helps me clarify what kind of Dr I might even need to look for. Sort of.

And then there was this, that I saw on another blog and thought it was fitting.:)

(maybe I should apologize for all the posts about my pain?  It's sort of consuming. And as I've been on sort of a roll with getting some posts out finally, I am finding that I have a lot of posts that have gotten backlogged in my brain. Trying to clear out some brain space. So you're getting some brain dumping. Enjoy!) ;)

Pushing the Rock

I started writing this post last year sometime and it's been sitting in my blog post drafts, unfinished, for many many months. I just decided to finish it. It is still relevant to me. I hope I remembered the points I had in mind when I first started it. I'll never know I guess. But here it is.
________________________________________________________________________________

Yesterday Zac and I attended the funeral of a long time friend of ours who had suffered from a painful disease for many years. I want to write more about him in another post.  But something struck me that was said in the services. It was that if all of our trials and tribulations were taken from us, the purposes and plan of Heavenly Father would be frustrated. He has plans for us that we may not understand.

And so on the way home Zac and I talked about this. How those of us who have been given particularly hard burdens to bear, illnesses that can't be cured, chronic pain, things that just can't be understood sometimes, sometimes our purpose in life isn't what we may think it is. It isn't always the same as it is for other people. This can be hard to come to terms with. Our purpose may be for others to learn compassion and service. Or who knows. The point is just that we don't always know Heavenly Father's purposes. And that if He took away all suffering and pain and trials, some of our purposes and His plan would be frustrated. I believe that is true. You may not agree with me.  And that's ok.  It's just something I'm pondering right now.

And then as I was laying in bed later on in the day, I remembered a story that was frequently told and retold when I was a missionary. I asked Zac if he had heard it and he said yes many times. So many of you are perhaps familiar with this story as well. That's ok. I'm going to tell it anyway. (And I know some of you may find this overly simplistic or trite or simply ridiculous but that's ok too. Metaphors have their limitations. But sometimes they help to see certain things more clearly. At least sometimes.)

It goes something like this: There is a man and he is asked by God to go out and push this very large rock. That's his job. That's what he's been told to do. It's a big boulder type rock, almost as big as he is. But God has told him to push it, so he does. He goes out every day and pushes with all his might. He groans and sweats and it's hot and tiring, but he keeps at it. And it doesn't budge. Day after day, he pushes and pushes and pushes and it just doesn't move at all. Finally after awhile of pushing this rock every day with no success, he becomes a little frustrated that he's been asked to do this task that he is clearly not able to do. Why did you ask me to do something when you knew that I would fail? He asks. Why can't I move the rock? Why isn't it moving? I've been working so hard for so long, I've done everything you've asked me to do, and I just can't do it. I give up. This is too hard. I don't know why you asked me to do this.
To which God replies, patiently and in love, I never asked you to move the rock. I told you to push it. It was never my intention that the rock move.
The man is stunned.
God continues, stop and look at yourself. Look at your arms and back, how strong you have become from pushing. Your legs. You have become what I wanted you to be by pushing every day against this rock. That is what I wanted. That is what I asked you to do.

And I think this is sort of what was meant by what was said in our friend's funeral service. We don't know why we've been asked to do some things. What we think might be our purpose here on earth, may not be what it really is. And we may not be able to see how we are accomplishing our purpose, or God's purpose for us.
I may think that I am supposed to be a "good mom", and serve others, and do any number of things that I "thought" I would do - besides being bed bound in pain for months at a time, but what I was asked to do is push the rock.
I may think that I'm failing, and I'm not doing what I thought I was being asked to do with this life, but what I was really told to do is push the rock.
Maybe someone else was asked to move it. Maybe everyone else's rock is slip-sliding down the road and you think that's "progress" and they're getting somewhere and becoming someone, while you are stuck behind a boulder that refuses to budge. You may not feel like you're able to live a "real life", like everyone else seems to be doing. We don't know. We only know how to do our part. And that's to push.

Another lesson, of course, is not to judge. If you think you see someone else who is pushing mightily and sweating and groaning and all you can think is, "huh? It wasn't that hard to get my rock to move! You just need to ______ (fill in the blank)." Then take a step back and realize your purpose may not be the same as theirs, even when the task looks identical. 

So, that's what I thought about in the days after the funeral. Sometimes I still curse it all, and don't understand, and this kind of perspective doesn't help me at all. But sometimes it does.

And that's all.

Doctor, Doctor

Well it seems like it might be time again to consider finding another new Dr. I wanted to take a break and get off all of my medications, so I did. But the pain is so bad sometimes. Not worse than it was when I was on the medications, haha. But enough where I start to think, please can't there be something out there that might help. Please. And so I think about it. But then I also think about the fact that I have seen 22 Drs of various kinds over the last 3 years and not one of them has been able to help me. It starts to feel kind of hopeless. And I have the words of a neuropsychiatrist that I saw once (upon referral from my neurologist) ringing in my head as she asked me, in a not nice tone, "why do you think you've seen so many Doctors?!" Ummm . . . because no one has helped me!!!! But I think about that. Why so many. I don't want to appear to be drug seeking. And I'm not just Dr shopping, trying to find one who will tell me what I want to hear. I want help. And with chronic pain, I do think it's important to "shop" to find a Dr you can deal with long term, sometimes even a monthly basis. I think I deserve to find a Dr who listens respectively, wants to find things to help me, able to think outside the box, if necessary, and has a responsible and courteous office staff. Unfortunately, those things appear to be difficult to find all in one place. I know I don't know owe anyone, really, an explanation of why I've seen so many Drs (some of it is simply seeing different specialists and getting the run around via referral to see who might be able to help me). But I feel like going through it. So here you go. And I'm not including Drs I've seen for emergencies or illness. These are only ones that I was trying to get to help me.


1. My reg Dr because I thought it was an ear infection. He was actually the first to mention Trigeminal Neuralgia. But I didn't want to believe it.
 2. My dentist because I thought I was having tooth pain. Nothing wrong with my teeth.
3. ENT - because surely there must be something wrong with my ear?!? Nope, he referred me to an ENT nerve specialist
4. ENT nerve specialist - he thought I was having TMJ issues. Put me on a TMJ regimen, which didn't help. Referred me to neurologist. Also thought maybe I should see a dentist. Right.
5. Another Primary Care dr for migraine
6. First Neurologist. The most condescending Dr I think I've ever spoken with. Also had a thick foreign accent I struggled with. I saw him for several months before deciding to try a different neuro medical assistant within the same practice.
7. Neuro Physician's Assistant - he was pretty good. But then I tried to get a medical waiver for jury duty (I was in bed all the time, I knew I couldn't sit for long hours or concentrate when in pain). They gave me a hard time about faxing the form (basically, they told me they would fax it, then after I had driven 30 min to their office to take care of it, they said oh sorry we have a policy that won't do that for patients. Uh huh.), which was kind of the last straw. Office staff was rude and often didn't call back for DAYS after calling for medical advice. Not very helpful when you're having a reaction to a medication or something. I just didn't want to deal with the staff anymore.
8. NeuroSurgeon #1 - Just to see if there were any surgical options for me. He said I didn't have TN and he couldn't help me. Basically shooed me out of his office.
9. New Neurologist #2 - tried a few new meds, nothing was helping. They had a very brusque medical assistant who would take all the calls, talk to the Dr, then call back, whenever I called for questions about meds, needing urgent pain care or anything. She was not nice, at all. I avoided calling the office to avoid talking to her. Finally, when I had the 22 day migraine and really needed something to break the pain, I called back and forth with her several times over several days. They basically told me to just keep taking the meds I was on and they'd see me at my regular appt in 2 months. No help. Whatsoever. I had been desperate enough to go to the urgent care, and the ER, and the Dr who was primarily treating me for the condition just tells me to keep taking the meds I was on ( that obviously weren't helping) and come back in 2 months???? I felt like I absolutely needed something to help sooner than that and if she wouldn't help me, I would go elsewhere.
10. Back before neuro #2, I went to the first pain management clinic. All they would offer me was a nerve block. But they didn't actually have a Dr there who could do the kind of block I needed, so they would need to have this other traveling Dr do it, because he had more experience with it. But it wasn't a very common procedure. Ugh.
11. So then there was the Pain management Dr who actually administered the nerve block into the center of my head. Which was a complete nightmare and didn't work anyway. They told me they didn't know what else to do. Ok thanks.
12. Seeing neuro #2 she referred me to pain management clinic #2 that she thought would be better. They only wanted to do another nerve block, which I was fairly certain I could never ever go through again. That was the end of that.
13. After the 22 day migraine and I'd fired neuro #2, I saw an integrative medicine Dr. Very nice Dr. Tried a bunch of stuff that didn't help. He wasn't covered by my insurance and was costing me $200 a visit. Uhhh, just couldn't keep that up without results.
14. NeuroSurgeon #2 - just to see if another Dr would offer me any surgical options, because I KNOW there are neurosurgeons who do things for people with my type of pain. Nope.
15. Neurologist #3.
16. Neurotologist - referred by neuro #3. He suggested I continue care with neuro.
17. Opthamologist - referred by neuro #3
18. Psychiatrist - referred by neuro #3
19. Neuropsychologist - referred by neuro #3
20. another general practitioner to treat an allergic reaction to a med prescribed by neuro #3
21. a different ENT - to look at throat pain that I wasn't sure was related to my other pain but she couldn't do anything. Just more nerve pain.
22. And somewhere in there I also saw a chiropractor who jerked my neck so hard it scared me and I started to cry. Didn't go back.

And then neuro #3 tested me for sleep apnea with an overnight sleep study which was very expensive. And the test results were very clear that I DO NOT have apnea. They have a scale: no apnea, mild, moderate, and severe. My results were in the NO APNEA range. But this Dr basically insisted that I still have apnea and should try a CPAP machine, even though my portion (after meeting our deductible) would still be over $400. Umm, excuse me?! And we tried botox which was a much much worse experience than I anticipated and didn't help. But he wanted me to continue, because it takes up to 4 treatments to know how well it will work for you, if at all. But, umm... all it did was cause me more pain for a month! I just couldn't do it. And my last visit with him, he basically said to come back again when I decided to get the CPAP, or do botox again. So that was when I fired neuro #3.

And that's when I decided to get off my meds and take a break from Drs for a little bit.
And that's how I've seen 22 drs in 3 years.
Fun, huh??

And now I'm scared to try again. So scared. Can you blame me?

Solace: a pain visualization

There are times when I am in a lot of pain that I am just lying in bed, wishing to disappear. Sometimes distraction helps. It has to be something that gets me out of my head, because my head is where it hurts. So sometimes soothing music helps. If it's not too bad, doing things like coloring or reading can help. I can't always do those. Sometimes I sleep. Sometimes I take medication to make me sleep. And sometimes I just lie there.

Oftentimes the thoughts that overcome me in these times are dark, lonely, and hopeless. It is so hard to get out of it. It becomes a mental battle just to drive some things out of my head. Sometimes having something else to focus on can help just a little. At some point in the last few years, I devised this little visualization exercise to give me something else to focus on sometimes. I don't always think of it. Sometimes it doesn't help. But it's one of the things I use to try to comfort myself, so I thought I'd share, just in case anyone else in a similar situation can find it helpful. Or maybe just writing it all out will be helpful to me. I don't know.

Here is the scenario: I am lying on a kind of bed, but it is low to the ground, kidney bean shaped, more like a nest or a pod than a bed. Maybe a cocoon. It is bluish white and made of soft fabric. It almost glows. And it is the perfect temperature. Sometimes I cover myself in a soft blanket, just enough. I'm in an empty room except for this nest. Lights are dim. Standing around the edge of the nest are beings that I think of as my protectors. They aren't really people. Just beings. They are dressed in white, but I never see their faces. All I know is that they are there to look over me while I rest and heal. They won't let anyone or anything come close to me that will hurt me in any way. They only look out for my best interest. I am safe, protected, warm. Beyond my protectors is a throng of people and they are all people that love me and care about me. This may seem presumptuous or cheesy, but in moments of severe pain, I need to remind myself that these people are there. They are there to surround me with love, nothing else. I look in their faces and I see people I know. My friends and family. My husband and children. There are also people I don't know, or don't recognize. Some of them are my ancestors that only wish me well. Some are people I have influenced that care about me but I don't know personally. They are all there. I look into each of their faces. I am known, understood, and loved beyond what I can understand.

They stand in silence and send me their thoughts of love and caring. Sometimes the protectors allow people to come stand at the edges of my pod and they hold my hand or touch my arm. Just to remind me they are there. There isn't anything they can do to help me. Nothing is needed. They just stay. Sometimes there is a ripple of negative energy in the throng of people standing by and there is something disruptive or contentious that happens. Conflict with any of these people. Anger. Blame. Frustration. Towards me or anyone else. The protectors know that now is not the time for me to deal with any of this and so they gently but firmly remove any of these people from my surroundings. Everything is done calmly and quietly. There is only peace. That is all that is allowed.
I cannot come to harm. I need only be still and wait. I soak in the love of those around me. They want me to be well. They understand that this is all I can do. They are there for me, just to be there. They want to be there.

And this is where I stay. In stillness and quiet. Calm. Peace. Cared for. Surrounded by love and caring. Sincerity. Safety. I sink softly into this feeling.

And sometimes this helps lift my brain out of the pain just a little. Sometimes.

Food Woes

Remember earlier this year when I did a food elimination diet and took out gluten, dairy and just about every food on the planet (exaggeration)? I'm not sure if I wrote all about it. Sorry this is going to be long.

It started after the 22 day migraine in November. I saw an integrative medicine Dr who ordered a whole bunch of blood work including IgG food sensitivities. This is actually a bit controversial. Some people think these tests aren't accurate or meaningful, but other people, well, do. Just an explanation of IgG. So there are basically 2 types of food allergies or sensitivities. IgE sensitivities are true allergy, causing a histamine response when the food is consumed (to one extent or another): rash, anaphylactic response, itchy mouth/throat, etc are responses to true food allergies. IgG on the other hand is a delayed response sensitivity. Here's where it gets tricky. It can be the cause of a host of ailments (depending on who you talk to), from eczema, gut problems, to behavior issues, inflammation in the body, etc. From what you read, some people seem to think IgG sensitivities can cause just about anything. And thus, by removing IgG sensitivity foods, you can heal and cure just about anything. Well, you do your own research and come to your own conclusions. This was our experience.

In November I tested high for Milk, Wheat, Egg and Gluten. My C-Reactive Protein was also abnormally high (this is an inflammation marker. They typically use it as a gauge for risk of a "cardiovascular event." There is some controversy about that as well. But at any rate, it shows how much inflammation in the body.)  So, my integrative med Dr recommended I go off of these food I am supposedly sensitive to and see if I noticed a change in any of my major symptoms: migraine, Trigeminal Neuralgia, fatigue, depression. Because food sensitivities could be causing inflammation and inflammation could be causing problems. Seemed logical.

During this time, my neurologist recommended I try a Low Tyramine Migraine Diet. Foods high in tyramine can be migraine triggers. This included all the other stuff I listed in my post in Jan - MSG, nitrates, fermented foods, citrus, nuts, pickles, olives, hydrolyzed yeast, cheese etc.
So I figured it'd be worth a try and went off of all of that. Just a note here: MSG is in just about everything processed in any way. Even things that say MSG free typically have a MSG derived ingredient, it's just more sneakily labeled. This was the most challenging - aside from the gluten and dairy.

So, I was going to do a 2 month trial of going off all these foods then have my blood work retested. What happened was I kind of stopped eating. This wasn't healthy, but I was so overwhelmed by trying to find things I could eat. I may have been unusually overwhelmed because I was in constant pain, and so fatigued I would rarely get out of bed. The thought of trying to find food seemed to be too much. There was probably some depression thrown in there too. It was just so discouraging. I had limited my diet to a few staples - oatmeal for breakfast (but did you know not even all oatmeal is gluten free?!), chips and salsa, Izze fruit drinks, popcorn, some gluten free breads and snacks, some fruits and vegetables. But if it wasn't readily available to eat, I basically did not have the motivation, energy, or capability to make it. I hurt too much and I just felt like crap. And eating the same foods all the time got really old, really fast. The result was basically no change in my pain symptoms or energy, and significant increase in depression. I had lost some weight, but only because I wasn't eating much at all. I laid in bed most of the time crying and sleeping. It was not good.

Coincidentally, Samuel also had IgG food testing done at around this same time. He went off dairy and gluten as well to see if we could get his nose and sinus issues cleared up. There was a possibility it could also help with his ADHD and behavior issues. So we were in it together. He had a hard time too, especially being around food and treats at school. It's just not something you want to put a kid through if you really don't have to.

Part of the problem with all of this is how subjective the results can be. Was his nose any better for those 2 months, or did it just coincide with not having a cold? Was my pain even slightly better and I just didn't notice? Was anything worth this?

I had my restesting done in February. My IgG antibodies were down, which was to be expected since the foods weren't in my system, but my C Reactive Protein was also down a lot. This could have several reasons though. It could be because I had eliminated the offending foods possibly causing inflammation. It could be because I had been supplementing Vit D, which had also been low, and plays a role in C Reactive Protein. It could have simply been because I lost a few pounds, period. That can also play a role. Or, maybe I had some kind of low grade infection causing inflammation the first time. Who knows. But my Dr agreed that if I hadn't seen any improvement of symptoms, it probably wasn't worth it to stay off of all those foods. He suggested giving it another month, then reintroducing the foods, which I did. Pain didn't increase when I reintroduced the foods either, so that was that I thought.

We reintroduced Samuel too, but Zac and I disagree on whether we noticed any significant difference or not. Another problematic issue was that it was then March and his seasonal allergies were starting up again, so it complicated what we were seeing and dealing with, as far as his nasal symptoms. Ugh.

But that's where we left it. We all started happily eating food again. I had felt so incredibly deprived that I probably took my food freedom a little too far and very quickly gained back the weight I had lost. Eating "normally" and not moving much at all is not a good combo for anyone in that regard, I suppose.
Fast forward 7 months to now, almost a year later. I went to see my primary Dr for a physical check up. Over the summer my blood pressure had started to get pretty high, but my Drs thought it could be from an increase in one of my meds. So I had gotten off it (slowly) and I wanted to check to make sure it was better. Gratefully it was! But my cholesterol was also borderline high. My C Reactive Protein was also back up high again. Darnit.  He recommends a pretty strict vegan (no animal products) diet to help with cholesterol and C Reactive Protein. Umm. Well.... I'm not sure I'm willing to commit to that, actually. But it's possible milk, gluten and eggs could have made a difference.

Then, Samuel had skin prick allergy testing, and along with just about every growing thing, he also tested positive for Soy, Corn, and Milk. Now, as Zac likes to point out, it's very possible to test false positive for food allergies on a skin prick test. Or just not have any allergy symptoms to that food. So just because you test positive doesn't necessarily mean you  *need* to avoid it. When he was tested at about the same age, he tested positive for almost every food. But there are only a couple that actually cause him symptoms. Even those, he eats occasionally and just deals with the symptoms, itchy throat mainly. So. Samuel's Dr recommends going off of all the IgE allergic foods from the skin prick test, as well as eliminate his IgG sensitivity foods (which would add gluten/wheat to the list), see if any symptoms improve, then add them back in gradually, one at a time to see if any symptoms return.

And here we are again. Do I eliminate milk, gluten and eggs again with the thought that it might lower my CRP again (assuming that's what made the difference the first time)? Or just try to lose weight, lower my cholesterol (with somewhat more lax means than strict vegan), start back up on my Vit D vitamins, and hope that makes a difference? Does any of it even matter?

I know things can be happening in the body that don't cause symptoms but are still damaging. That's what niggles my brain in all of this. But it's so hard when you don't see or feel any difference at all when making significant and difficult changes. I don't know if I can maintain it when I don't see any differences in pain or anything. And I know people are able to make drastic changes in diet when it is necessary. People do it all the time. I know it can be done. But most of the time, for weight loss, it seems like moderate changes are more sustainable. I think you have to be able to know that what you are doing it absolutely necessary and it makes a difference and you can live with that.

And do we make Samuel go off all those things again and see what happens? I think we need to at least try it and see. But I am dreading it. Just dreading the entire process. Maybe I need to change my attitude. We are doing allergy drops for him too. He just hasn't had a clear nose probably his entire life and I can't help but think it affects his speech. He's had speech and behavior issues since he was a year old. He deserves to be healthy and happy. We need to figure out what that means for him.
It must also be said that Zac is the primary cook in our family, since I have been bed bound for so long before, and it is difficult to ask him to change our entire diet drastically for something he does not 100% agree with and believe in. I don't know if I have it in me to fight for it. I'm not the one who has to completely adjust the shopping and meal planning and cooking. So we have to be on the same page, 100%. We're not there yet.

So, I'd love to hear your thoughts, advice, sympathy, anything at all.
We haven't decided to start anything yet. I'm just letting it all get absorbed. All this information. And trying not to become paralyzed by it all....
Thanks for reading, friends....