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.