February Photo-A-Day #4

Day 21: A fave picture of you - this is us going camping alone together for the first time as newlyweds, '98.

Day 22: where you work - well, it seemed like anything I was doing, I did from in bed, so there it is. (Pathetic, I know. It was a bad day.)

Day 23: shoes

Day 24: Inside my bathroom cabinet - well, sort of.

Day 25: Green! Spring is coming!

Day 26: Night

Day 27: Something I ate

Day 28: Money - my daughter's cute pig:)

Day 29: Something I'm listening to

ok, that's it for February! Wasn't that fun? I thought it was.;)

Want to try it for March? Here's the list at FatMumSlim.

I might keep going with it . . . just because it's one thing I actually can do everyday and I look forward to it. And I really need that right now.

(I'm still hurting a lot. No improvement in the nerve pain stuff. Carrying on . . .)

Theories

So, as I've described to people the pain I've been having and just generally talking and venting, it seems everyone has their own theory of what might be causing the problem. Some of them include:

- magnesium deficiency
- dehydration
- stress
- sinuses/ allergies
- radiation from cell phone
- proximity to power lines
- proximity to natural gas line
- eye strain from computer/phone screen

I know everyone is just trying to help and I do appreciate any ideas of things that might help. I really do. But . . . I must say, in some ways it gets exhausting. I can only try so many things and entertain a limited amount of ideas in my brain at one time. I do research and I try to figure things out, and I try to tease out side effects, and complications, and all sorts of cause and effects. Some of these come from my doctors themselves. And I can just only do so much.

Here are the different theories all the different Drs I've seen have come up with. They seem to rotate around some common themes but no one has real answers to give me. I understand the best Drs can do is educated guesses. But I respect and rely on their expertise (and I pay good money for it). It is tiresome and frustrating to not know what's going on. Especially going day after day after day in pain and not knowing if anything will help or if it will ever stop. But anyway. Here's the scoop so far:
{This is the complete chronological tale. Brace yourself.}

Aug 2011 - ear pain radiating down into lower jaw

Dentist: not tooth, probably not TMJ disorder (disorder of the temporomandibular joint, or jaw joint)

Dr: ear infection, swollen lymph node
(after antibiotics didn't help: possibly trigeminal neuralgia - TN)

ENT: not ear infection, maybe TMJ disorder or TN

And then it . . . sort of mostly went away.

Fast Forward to . . . . Jan 2012

Had a constant terrible one-sided headache for a couple wks. And saw:

Nurse practitioner: not migraines, but here's some migraine med samples (didn't help)

Then my ear started hurting as well as my head. And my cheek. And eye. All on one side.

ENT: not ear related. Ordered MRI.

Results of MRI: nurse said it's not a tumor, MRI normal, prescribed amitriptyline for nerve pain.
The ENT was retiring and told me to see another ENT for follow-up.

Picked up MRI results on my own to bring to new Dr: said there was a small meningioma or schwanoma (types of tumors), or neuritis (nerve inflammation). WHAT?!?

Nerve ENT (for follow-up and clarification of MRI): whatever showed on the MRI (tumor or neuritis) was on the wrong side. It would be causing me pain on the other side. (What the heck?!)
He said it could be TMJD, but that wouldn't explain the pain in my cheek and eye. So it could be trigeminal neuralgia.

He referred me to a neurologist.

Neurologist: probably not TMJ disorder since it doesn't get worse with chewing or exerting my jaw. Said it could be facial migraine, which is a migraine where the pain is felt primarily in the face.

Some of my own research shows that migraines can then trigger the trigeminal nerve pain. I'm still not sure though that I completely understand what the neurologist thought was going on. He prescribed Lyrica to take instead of the amiptriptyline. Has me keeping a detailed pain/headache log. Scheduled me for an EEG and did some bloodwork to rule out some other stuff.

So, here I am.
I bought myself a book about trigeminal neuralgia and facial pain. I'm about 1/3 of the way through so far and if I were to diagnose myself, I'd say it's most probably atypical trigeminal neuralgia (or TN type 2).

Funny thing is, they say the best way to diagnose it is by trial and error with medications and if the ones that work are the ones that work for TN, then that's probably it. But just because the meds don't work, doesn't necessarily mean it's not it. Uh-huh. So helpful.

Anyway. That's the story.

Any theories you'd like to add? What's your favorite? Or based on all my Dr's visits, what do you think is going on??

[Not, you know, that I'll necessarily take anything you say into account or anything. But it's fun to add it all to my growing list.;)]

And PS - I apologize for all the negativity and whining, moaning, and complaining. I'm not doing very well but, just so you know, I'm trying to get help as much as I can. Thanks for your patience and understanding. Really. It means a lot to me.

february photo-a-day #3

Day 14: heartDay 15: phoneDay 16: Something New - samples of new med to try

Day 17: Time - time to make myself get out of the house

Day 18: Drink - one of my pretty teapots

Day 19: Somethine I hate to do - scraping the windshield

Day 20: Handwriting: handwritten letters from the people I love are some of my most prized possessions

Hilarious

Here. Add this together:

Pain in my head, ear and face that gets worse when I even move around too much, much less actually exercise

+

Medication that makes me ridiculously sleepy and might increase my appetite (and may or may not help the pain).

+

A hefty dose of my pre-existing depression that wreaks a whole world of havoc on my energy, motivation, eating and sleeping (even without adding in the 2 factors above).

+

Struggling to lose extra weight anyhow

Ok now put em all together and what do you get?!?

= my Dr's final words to me as he breezed out of the office: "Just Don't Gain Weight!!"

Oh. Ha.
It's so funny it just makes me laugh. Except laughing makes my face hurt. So you can laugh for me.;)

and now, introducing the trigeminal nerve

Just as an introduction to what the various Dr's think is wrong with me, allow me to show you this wonderful friend of mine (ha), the Trigeminal Nerve.

Just a little anatomy lesson. For Fun (isn't this fun? oh yes. of course it is).

The Trigeminal nerve originates deep in the brain just above the brain stem. There's one for each side of the head. And then each one comes out here on the face:and splits into 3 main branches.

This is another illustration and an explanation of how migraines can trigger trigeminal nerve pain:

At any rate, most of the pain I'm feeling right now is along that 2nd middle nerve path and deep in my ear. It's pretty constant, but varies in intensity and severity. This time, I'm on 7 wks and counting of rather constant pain, most of the day of some variety, every single day. Sometimes it aches, sometimes it's a heavy dull almost numbness, sometimes it's burning, sometimes shooting. Also occasionally around and behind my eye. And the first time the pain appeared back in Aug (and lasted about 9 wks) it was my ear and down to the lower jaw.

And, in case anyone is just dying from the suspense, whatever the MRI showed in terms of neuritis or small tumor, it's on the wrong side. It would be causing pain on the other side of my face. So, whatever it is and whatever that means, it doesn't actually explain anything about the pain I'm actually experiencing. Of course it took 3 different Drs to tell me that finally. But whatever.

More on all my Dr visits another time . . .

(photos from Wikipedia and here. Also good information there, if you're curious)

what I need

ok. So perhaps I have been too public about all this nerve pain stuff. It is true I am not one to hide my feelings. I will not say I am ok when I am not (generally - although I will laugh compulsively even when I'm not very happy. Nervous habit). Truth be told, I've been struggling. Quite a bit. I am not one that deals very well with constant pain, apparently. I am not good at "bucking up" and "being strong" or whatever you want to call it. I guess maybe I'm a wimp. I can probably admit to that. At any rate, I saw the neurologist yesterday and I will write soon about what I do and do not know from that visit. But I'm going to write this post first.

I've had a few people ask to let them know if I need anything. The problem is, I feel like I need so much it goes beyond what anyone can do to help. And I have angry, judgmental, sarcastic voices in my head telling me that what I need doesn't matter anyway. There are even some that try to convince me that what I think I need, isn't what I really need. Sometimes I hate my brain.

[Well and I just wrote 2 more entire paragraphs that have now mysteriously disappeared. So. Maybe that's my clue that I shouldn't post what I had written. ugh. hm.]

So anyway. I guess what I really need is to accept the reality of what is. I need more strength and energy and motivation to do things even when I don't think I can. I need to know that I matter somehow, even if all I can do is get through the day spending most of the day in bed. I need caring and supportive people around me who won't tire of continually expressing their caring and support (haha - yes, that's you, my faithful friends). And more than anything, I guess I just need to know I, and my family, can get through this. Even if everyday hurts, even if it never goes away or gets better. That's what I've been struggling with the most. And what no one can help me with.

But thank you for your offers to help. It helps to know you care.

(and ps - yes, I am a believer in faith and prayer. But . . . it's still hard. That's all.)

And a final quote (relating mostly to emotional pain, but applicable to more, I think. And I have actually felt a bit of both lately, so it seems to apply):

"Many of us spend our whole lives running from feeling with the mistaken belief that you cannot bear the pain.

But you have already borne the pain.

What you have not done is feel all you are beyond the pain."

- Bartholemew

Walk in the snow (More trees in winter)

(and experimenting with some photo editing apps and blog posting from my phone. Hmm)

"Share Love Generously" - some love quotes and links for you today

Love easily confuses us because it is always in flux

between illusion and substance,

between memory and wish,

between contentment and need.

- unknown

To love is not a passive thing.

To love is active voice.

When I love, I do something, I function, I give.

- Bernard Iddings Bell

The art of love . . . is largely the art of persistence.

- Albert Ellis

Love never dies a natural death.

It dies because we don't know how to replenish its source.

It dies of blindness and errors and betrayels.

It dies of illness and wounds;

it dies of weariness, or witherings, of tarnishings.

- Anais Nin

Love and Hate are not opposites.

The opposite of Love is Indifference.

- A.S. Neill

For none of us can ever express the exact measure

of his needs, or his thoughts, or his sorrows;

and human speech is like a cracked kettle on which we tap crude rhythms for bears to dance to,

while we long to make music that will melt the stars.

- Gustave Flaubert

(go read here about an idea of changing Valentine's Day from a lover's holiday to a Day of Generosity.

And read here about loving imperfect, tattered and torn loves. I love both of those posts and had to share.)

(and I apologize profusely for not linking to the sites where I found these images. I snagged them off Pinterest, of course. They're not mine. My face has been burning and shooting pain today, so I just wanted to get this posted and be done. Sorry.)

February Photo-A-Day #2

Day 6: Dinner
Day 7: Button. Sometimes I could use this one.

Day 8: Sun. Me standing in the little sun coming in the window.

Day 9: Front Door

Day 10: self portrait

Day 11: Makes me happy. A pile of new library books to read.

Day 12: In my Closet. Binder full of letters from Zac in Spain 94-96. (This is looking up at the spine of the binder in my closet. Apparently, it can be confusing. But oh well.)

Day 13: Blue. "Blue skies are coming . . . but I know that it's hard." - Noah and the Whale

(go listen to it just because it's really good)

More later . . .

February Photo-A-Day - plus some more

Just some pics I've posted recently on facebook (yes I'm back again), twitter, and Instagram. I actually quite like them though, so yes, I need them on my blog too. ;)

I also decided to try to do this:

I started on the 2nd day but backtracked and took the pic for Day 1: your view today

out our front window

Day 2: Words

those are the words that kept going through my head (part of the MRI report)

Day 3: Hands

Elisabeth playing

Day 4: stranger

went a little symbolic on this one using this song lyric as the background for the photo: "You're a stranger now unto me" - Simon and Garfunkel

Day 5: 10:00

this is actually 9:00 but close enough: Going to church

And some more of my recent Instagram funzies:

(and a quick update: still having mostly the ear and eye pain. The neurotologist I saw on Fri (ENT specializing in nerves) referred me off to a neurologist without much help or clarification. Anyway, more on that another time. It makes me tired just thinking about it. sigh.)

the good news is . . .

Look! I have a brain!

Proof even, in case there was ever any doubt. ;)

(no comments on the funny shape of my head or anything, please. I just think it's sorta cool to have a picture of my brain. It's normal, I promise. Or so they tell me. Or at least I think that's what they said. Mostly. haha.)

Anyway.
The bad news is there is something going on in there that is causing me trigeminal nerve pain and I am not completely sure what it is. As far as I know right now, it could be some kind of small tumor, or it could just be neuritis, which is inflammation of the nerve.

I spent Mon and Tues in the most frustrating process of getting the MRI results that I could have ever even imagined. Ugh. And the Dr is now retired. ugh ugh ugh. I can't even think about it all right now, but I might write about the whole experience sometime soon. Just to vent.

I hope to have more definitive answers very soon.
Just thought I'd give the short version update.

So, I've mostly been a wreck this week. I'm finding it hard to concentrate on much of anything (even reading! ack), or do much of anything, or anything really. The combination of the constant pain, the many frustrations, this new medication he gave me to try causing excessive sleepiness, the worrying about what's really going on . . . well, it just hasn't been a good week at all.

And that's all.