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.

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

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....

the worst anniversary ever {{warning: long post!}}

I am one who keeps track of things. It's in my nature. I have a planner (where I write more things down after the fact than I do beforehand), and a journal, and facebook, Instagram, and this blog. All of which serve me well in keeping track of dates, and things that happened, and my feelings, and, as it so happens now, my pain journey. It's part of who I am. So, it comes as no surprise that I know when my pain started. And the anniversary of that time is this week. Three years.

Actually, it's funny because I don't have the "actual date" the pain started, because it started as an ear ache/jaw pain that I thought might be an ear infection or a tooth problem. But I have the dates of my first Dr appts (Aug 3 I saw my dentist and Aug 9 I saw my reg Dr). And I made a note in my planner on one day that I had had the ear pain for about 4 weeks at that point, which backtracks to this week. So, yeah. Happy Anniversary to me. Worst anniversary date ever.

But in recognition of this, I thought I'd do a few little updates and blog posts that have been in my brain for a really long time.

First of all, how things stand now: Well. Hmm. Let's go back a bit. In November I had the 22 day migraine when my current neurologist refused to give me any help to abort it ("just keep taking what you're on" she said). That wasn't acceptable to me, since I'd already been to the urgent care and ER in desperation for the pain. Not offering me any help to get rid of this pain was not an option. I needed a new plan. And fast. This led me to rallying all my sources to find new Drs or ideas. In Dec I started seeing an integrative medicine Dr who I was told was good at helping migraines and getting to the root of problems. I saw a chiropractor (who honestly scared me so much with his technique, I almost cried, and he asked me if I was ok.... I wasn't really a fan of that - and although I scheduled a whole month of follow-ups, in the madness of Dec, I cancelled all of them and never went back). And I found a new neurologist.

The integrative medicine Dr did a bunch of blood work that led me to a few ideas to try. I started supplementing Vit D, because my levels were very low. I tried a progesterone supplement, just because he said a lot of women feel better with a little more, even though my levels were ok (this may have contributed to the breast discharge problem that I subsequently had, although I've been off of it ever since and still having that other problem. So whatever. Who knows, but I won't take the progesterone anymore just in case.) And my blood work showed IgG sensitivities to milk, wheat, eggs and gluten. I also tested high for an inflammation marker.  So, I went off of all of those foods. The hope was that by avoiding the things that my body was sensitive to, it might reduce inflammation in all of my body, which might be contributing to my pain, or depression, or energy levels, or something. Ok. So we tried it.

My new neurologist was a headache and sleep specialist and had also given me a low-tyramine migraine diet to try. So, that's when I went off of just about every tasty food on the planet (between the migraine diet and the IgG sensitivity foods I was avoiding). This was not a good time. I was lethargic, depressed, and basically slept all day and stopped eating. I didn't have the energy to find things that I could eat and I just didn't feel like bothering with any of it. Plus my pain was terrible. Pain can also be exacerbated by emotions too, so it's just a terrible cycle. It's impossible to tease out all the cause and effects, but I sure didn't feel any better.

In Jan, I also had an overnight sleep study done to rule out apnea, ordered by my new neurologist. I barely slept at all that night, but somehow they collected enough data to still consider it effective. And I got the report and it basically said I DO NOT HAVE SLEEP APNEA. There is a rating score they use to differentiate between normal breathing, mild apnea, moderate apnea, and severe. I was in the normal range. But, the neuro still thought that apnea might be a cause (huh?!?) and that I should try a CPAP machine. Well, the machines are costly and not easy to sleep with, so I held off on that.

He recommended that I try Botox for the chronic migraine. It would take up to 4 treatments, 3 months apart, to know the full effect of how effective Botox would be for me. Everyone has a different response to it. Some people it helps right away, either with intensity or frequency of migraines, some people have an accumulative effect where they get more benefit with each treatment, and some people it doesn't help at all, or even makes them worse. He said it wasn't very painful, most people were fine, and that I wouldn't need the numbing cream that a lot of Drs use for it. LIES. hahah. It was terrible!! Probably the worst medical procedure I can ever recall since the terrible nerve block experience. I sobbed. He asked me if I was ok, and I said no not really. But what else could he do? The injection sites stung and ached and throbbed for weeks. This isn't a typical response. I had more migraine pain in those areas, when previously I didn't have any pain at all there. And my eyebrows became paralyzed - for the entire 3 months that the injection was "working". Oh and the best part?! He had told me there were NO SIDE EFFECTS. Riiiiiiigght. Of course I knew from my own research about all the possible side effects beforehand, but I was ticked that he said there weren't any, and I had decided it was worth at least a try to see if it would help me. I wasn't happy about any of this, and had decided there was no way I could do it again. Just. couldn't. Not worth it.

Sometime in all of this, I was also dealing with breast pain and discharge and having to undergo mammograms, ultrasounds and a ductogram, all of which were not very pleasant.
And the neuro had sent me to a neurotologist (kind of an ENT neuro), and an ophthalmologist. The neurotologist said I most likely had Menieres disease, due to some strange sound distortions I had had occasionally and very rare vertigo episodes years before, and I had very mild hearing loss. But my ear pain, he said, was most likely a nerve issue that the neurologist should help me with. Great. The ophthalmologist said I had very dry eyes and that could cause eye pain. Hmmm. He said I should do drops every couple hrs. But I kind of don't think my dry eyes could be causing the exploding type of eye pain that I experience. I cancelled my follow up there.

So, anyway... the neuro had me try a medicine to rule out Hemicrania Continua, a headache disorder that causes one sided head pain. The med caused half of my soft palate and throat to swell, making me gag, an allergic reaction. I saw a different Dr on short notice who told me I should stop taking it, of course, and prescribed a short term steroid. The steroid seemed to actually help my pain a little, but you usually can't stay on steroids long term. Interesting though.

The neurologist had also tried me on a couple different prescription NSAIDS, a beta-blocker, nausea med, and ear medicine, none of which really helped. He also gave me anxiety meds and a muscle relaxer, which I could take when the pain was bad just to help me zone out and not freak out. Also to help me sleep. That was probably the most help he ever gave me. After a few months being gluten-and-everything-else-free, I went back to the integrative medicine Dr for follow up. My Vit D levels had improved, the inflammation marker was down, and the IgG sensitivities were down but still not normal. Since he wasn't on my insurance and I was paying $200 a visit, we determined that I couldn't afford to keep seeing him. So he recommended I keep off the foods for a couple more months and if I still didn't see any improvement in anything, then it probably wasn't worth staying off the foods (hallelujah). Oh, somewhere in there I also tried taking a thyroid supplement. My levels were on the low side of normal. But I never noticed a difference being on that either, so I stopped. Didn't notice a bit of difference in my pain levels going back to eating normal food, but I did unfortunately gain back the weight I had lost when I wasn't eating. No surprise there.

And then, my neuro kept pushing me to get the CPAP. I explained my concerns in getting it (the cost - $400 out of pocket after our deductible has been met, the possibility of a face mask aggravating my face pain, the fact that I DON'T ACTUALLY HAVE SLEEP APNEA), but he was still very insistent that trying this might help me. He was also very disappointed that I wasn't willing to give Botox another try. Then he tried to tell me that maybe all of my pain was actually stemming from my depression, so he referred me to both a psychiatrist and a neuropsychologist. Hm. I knew my depression had been pretty bad so I felt ok about taking the referrals, since I clearly needed more help than he could give me. But I really didn't like that he wanted to attribute all my pain to my depression. Seriously.
I was seeing a counselor when my pain started and asked him about this, as this is often a question that comes up with chronic pain, and he very clearly explained to me that when pain is associated with depression it most often manifests itself in more vague ways: a dull headache, backache, stomachaches, etc. It doesn't usually follow the pattern of a specific disorder, like Trigeminal Neuralgia. So he didn't think that was causing anything. They might be feeding off each other, as emotion plays a very significant role in the perception of pain, but that would be the extent of it. Many many people with chronic pain get this kind of thing from Drs, mostly when the Dr has run out of ideas and is feeling out of their element. They don't know what else to do, this makes them feel incompetent, and they then blame it on psychology. Most people with pain feel invalidated, accused, and discouraged in this situation. I am not an exception. This, along with his insistence on Botox and CPAP (notably, his areas of expertise), convinced me that I was done with this Dr. He had nothing else in his tricks of the trade to offer me. He didn't know what else to do.

I saw the psychiatrist, who tried me on another anticonvulsant I hadn't tried yet. I had a potentially life threatening reaction, which sent me to the ER. She wanted me to try some antipsychotics to help with my sleep, mostly. I didn't feel good about that. She agreed that getting off the migraine preventative med (also an anticonvulsant) made sense, since I'd been on it for over a year and never felt like it helped at all. The neuro kept telling me my pain would probably be worse without it and didn't recommend getting off. But I followed the psychiatrist's recommended tapering schedule and now I'm off, with no change in my pain, either better or worse. She also increased my antidepressant, but then I started having high blood pressure which can happen from this medication. I had my blood pressure taken in different places and situations (even knocked out in the ER) and it was always high. So, since it was no longer working much for me, it could be causing me high blood pressure (which can happen at any dose), and there's always the slight possibility that my pain could have been caused by it (who knows), we decided to start weaning off of that too. That is a very long slow tapering process, since it is known for having nasty side effects getting of it (one of the worst for antidepressants). The entire process would take a few months, and I'm still in the midst of that. But she told me to call her anytime I'm feeling desperate, or have questions or anything and she seemed like she really wanted to find something to help, and that was encouraging.

I also went and saw the psychologist. She works closely with the neurologist, he referring patients to her, and she likewise. I was nervous about what he might have told her about me, with my stubbornness in refusing the CPAP and Botox, and how he thought my pain was caused by my depression, so perhaps I was a little defensive from the start. I didn't feel comfortable with how my information might be passed back and forth between them and I wasn't sure how it would work, since I had already come to the conclusion that the neuro had basically given up on helping me (our last visit, he told me to come back when I wanted to try the CPAP. Ummm, ok...). And there is also an element of rapport and feeling like someone is on your side. Like someone is listening and genuinely cares about YOUR experience. Having seen a number of psychologists/psychiatrists/counselors before, either for myself or my children, I kind of know how this works and how important this aspect is. Sometimes you just need someone you "click with" for it to work (also important with Drs, incidentally).  But this lady.... she seemed kind, and she went through the stack of paperwork I had filled out and asked some relevant questions, but then she just went on and on about some pain she had (nothing at all like mine) and what had helped her, or her sister, or somebody, and have I tried essential oils, or acupuncture....?  And I was taken aback a bit. During the visit, I just explained that yes I've tried oils and no I haven't tried acupuncture, but that I've tried a whole dang lot of things, and I was exhausted. My Dr had just basically given up on me. I had seen 22 Drs and health providers of different sorts over the last 2 1/2 yrs (to which she said, why do you think you've seen so many Drs?? in a tone that felt accusatory to me, like I'm just Dr shopping to find one that tells me what I want to hear. I felt I had to defend myself against my choices - not really how I want to spend my time).  I've already heard about just about every treatment available, I have been through a lot of crap, and really, can someone just listen to me for once???? I paid $75 to see this woman, I was paying her (I thought) to listen to me, because if a psychologist won't listen to you, then tell me, who will?!?! But I didn't feel like she was listening. She didn't bother to ask me what treatments I had tried, before going on about her own things that helped her, and she hadn't even asked me about my pain enough to even understand it. How could she know what could help me if she hadn't even talked to me about what it was like? She recommended a book about managing chronic pain (which I now have from the library) and suggested I take an online inventory assessment-thing that would help me clarify my strengths and values, which she said is important to remember during pain. I did it, which I found fascinating but not particularly helpful or relevant to what I'm going through. I went back to her again, and we talked a little, but it was clear this wasn't a good fit. If nothing else, I need someone not so closely connected to the neurologist that was driving me crazy. We mutually agreed that I probably shouldn't continue coming back. So that was that.

So that's where I am. I've started getting these terrible insomnia episodes (where I sometimes never fall asleep at all, all night long) that don't make a lot of sense to me. I've never struggled like this before. I don't know if it has anything to do with the medications I'm getting off of, or just my general anxiety levels, or my pain, or what. My pain seems about the same as it's always been, although it's really hard to evaluate that objectively. I sometimes don't get out of bed much for days at a time. I don't have a Dr to see currently. I'm just kind of in a holding pattern until I get off the antidepressant and then evaluate how I feel. There was also a very slight possibility that it could be contributing to the breast problem. So I'm waiting to do anything else about that (since it is ongoing) until I'm off of this too. It all just really stinks. Sometimes I am doing ok, sometimes I am just not.

And for three years now, that's how it's been. Every single day. Happy Anniversary.

the unraveling

It's a dreary day here today but I have my window blinds up and light blocking curtains open, which is unusual for me.  And I have music playing (my ipod on shuffle, always an adventure) and I'm determined not to fall back asleep. I want to write, so here I am. I don't have anything in particular in mind to write, I've just had so much on my mind I've wanted to write, and I finally looked here yesterday and was shocked to see that the last date I posted was in January.

So many things have seemed to come to a head. Not that things ever go along in straight line progressions, lining up neatly along graphs, building along, to come to some perfect conclusion, or resolution. No. But some things seem to be stretched until the breaking point. Or explosions. Or build into toppling block towers.
I don't know.
But there seems to be a a misconception out there of the "right" way to be sick. There is some unspoken, mystified, noble way to get sick, remain sick, and then, if you're going to be "really sick" eventually heroically either overcome your sickness or stoically die from it. I think I am breaking an invisible code by speaking of this, but I feel it. I feel it in the memes I see floating around the internet and in little things I hear and from things that I hear from other people in support groups, that they hear from people. That the "right" way to be sick, is to not complain about our ailments. And if we're in pain, certainly no one should ever know it. It is far better to suffer through things for everyone else's sake and hide our pain.
That's what everyone will want to hear about at the funeral, right? How they put everyone else first. How they never complained about the pain. You never even knew. That's the noblest way to die. The best way to be sick. That's doing "right."
But that's not how it happens for everyone, is it. That's like the storybook version.
You won't hear the storybook version from me. And I'm not even dying, so you don't get the heroic ending here.
There won't be people standing up at my funeral saying how I never complained. hahahah!!!

No, here things fall apart. Here you will find the wells of patience running dry. You will find the 8 year old crying that she didn't get as many years of me healthy as the older kids did and how that isn't fair. You will find me locking my bedroom door and telling the kids they can't come in - because they are just too loud and every sound hurts. You will find Zac losing his patience with the kids because he worked all day long and came home to make dinner and then deal with the messy house and kids who need attention, and then trying to gather the kids for scripture study and family prayer, and then getting them all to bed all by himself, while I am locked in my bedroom the entire time curled in a ball, and he hasn't even had a chance to say hello to me yet. Then after the kids are in bed and the house is finally quiet, and I come out to say hello to him because I finally can, I find him asleep on the couch because he's exhausted, And we find days go by without being able to hardly talk because these are our days now and we are both becoming completely depleted.

Here you will find me driving myself to the emergency room because Zac is in the middle of cooking Easter dinner for the kids and he just can't face it because it's too hard. Here you find us facing things we've never faced. Together and alone. Voicing things we'd never thought we'd say. Like, I couldn't come be with you. And, I don't know if I can do this. And, I'm so sorry this is our life.

Things aren't always bad. Don't get me wrong. But like I said, something just reached a point and things just started unraveling. And my neurologist gave up on me. That's a long story in itself. I've found myself grasping at the unraveling strings, trying to hold everything (and myself) together. Sometimes I wonder what will be left.
It's a funny thing sometimes, watching yourself and your spouse as you go through something unexpected like this. Neither of you can anticipate how you will react. You never can. You think maybe you can, you think you can prepare spiritually, emotionally, whatever, for hard times that might come your way, and you think you know someone, and you think you can advise someone else on how they should be acting or what they should be doing in a situation, but unless you are in it, and unless you are them, you cannot know what you would do.  You just can't. And you just won't know what you do, and how you would act, until you are in it. Like in a plane crash, some people freak out, some people are calm in crisis. Some people naturally help others, some the survival instinct kicks in so strong they only think of themselves. They say many people can't even remember how to unlatch the seat buckle because it's different than a car seat buckle. That's how much muscle memory and panic sets in. So don't think you'll know what you'll do. You don't.

And sometimes, it's hard seeing yourself and someone you love as you go both go through this together.
You're both getting a crash course in survival. And you don't know what to do. And then things change, and you start over again.

On a final note: in our house you will also find 4 kids growing fast and becoming their own fascinating individuals and trying to learn to get along. A husband who is giving all he can to his wife and family, who worries about providing financially for all of their needs, and does his very best to keep on top of everything that his wife can't do. A wife who receives loving and thoughtful surprise packages from a group of high school friends who are unbelievably kind. And a beautiful world all around us to notice and take photos of. Life is good.

As I saw in a quote today: "The world is larger and more beautiful than my little struggle." - Ravi Zacharias

It is.

what happened in November

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

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

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

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

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

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

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

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

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

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

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

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

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

Quick Update

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

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

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

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

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

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

Happy New Year: Facebook Frustration and Back to Blogging

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

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

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

Paralyzed by Choice

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

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

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

I don't know.

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

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

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

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

I don't know.

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

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