Saturday, February 7, 2015

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.

Tuesday, January 6, 2015

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!!

Monday, December 29, 2014

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.

- 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.

- 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! 

Monday, November 24, 2014

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...

by John 0'Donohue


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.


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.

Sunday, November 9, 2014

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!) ;)

Tuesday, November 4, 2014

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.

Monday, November 3, 2014

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?

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