Changing of the Blog

It seems like the blog has changed from Strabismus to a blow by blow on nerve pain. That's mostly because it wasn't until the past 3 wks or so I realize that the pain is a problem that has risen beyond simply strabismus surgery.  Surgery  no doubt stirred the problem.  But than it turned into a whole inflamed nerve. I wonder if the original pain was from surgery or from the trigeminal hurting this whole time. It sure would explain why the pain meds weren't very effective, and maybe why the left eye got in on it. Although I still can't believe that whole left eye thing.  That was RIDICULOUS!  Halstrom mentioned too it could be left overs from when I had shingles. Which is possible but I didn't have shingles on my face.  I obviously have nerve problems that's how I got the strabismus in the first place. It's the 4th cranial nerve.  So why not the 5th nerve, the trigeminal?  Also, my heart is almost always out of rhythm now, that's a nerve problem too I think.
I started my no sugar no grains thing again today, so hopefully that will reduce inflammation too. I'm not doing it for my face.  Just want to be healthy, if it helps my facial pain - great.  I hope to post less and less although I think of things that make me want to write.  Like tonight there was a program on tv and something got said that sent me right back to a topic I hate.  I wont' write about it though. Been there, done that.

I'm still so grateful. I still can't believe that second image is gone and my neck doesn't hurt anymore. 

Doc. Apt.

It's been a long day so I'll try to keep it brief.
I had a good visit with Halstrom today. The guy is good.  I had sent a letter priming him with what I wanted to talk about with him and sent my Mayo report with it. He had things highlighted and underlined and took at least a 1/2 hour even though he's busy.  I just wanted to talk to him when I was not under great deres.  For now I'll do what he recommended with supporting the nervous system with different supplements and hope for the best. He said Mayo was number one for Trigeminal neuralgia. That was after he said the one case he recalls was someone he interned with had to retire due to T.N. Lovely!
This week was quite with pain which is so nice.  But the last 3 days I feel it's switching back to the left side.  I've had these dagger in the skull pains right behind the left ear. I had about 5 of those in 20 sec or so intrevals in a 24 hr period, which you can deal with 20 sec. pain.  Then today it's quite strange like I have a zinging buzz in that spot and then my left ear went on mute today for about 30 minutes and I got dizzy for a half a minute.  Now my hearing feels just fine. But the buzzy feeling is there. Doesn't hurt though.  Ah! to be a freak of nature! All I hear now is a gin and tonic calling my name. :) just kidding gotta go run errands first.

Residuals

I got a sweet letter from one of my clients the other day.  Actually I have had almost each of the 5 family members in to see me.  Back in the 3 weeks of heaven  I wrote a note to any one I ever had a positive thought about and I must have written to this family.  They were gone for a long time to Chile and just returned and got the note I sent months ago, so she just read what I wrote.
I have no idea who I all sent cards to and what I all said. But every once in a while I get these comments or a note in the mail explaining how they loved what I wrote to them.  Frankly, I have no clue what I wrote but I know that I really meant every word in that moment.  So the 3 Weeks of heaven have this residual effect that bounces back like a boomerang once in a while.  It's a good thing.
Not too much pain the last day or so.  I discovered gin and tonics are a great pain reliever.  But can't always take that for pain especially while driving :)
I was driving a long distance Saturday and Sunday this weekend and I know my head is straight while driving. That is pretty cool to me.  Sometimes I wonder if I'm back to tilting and sometimes I do see double especially when laying down but when seeing accurately really matters my eyes work together and they are doing well.
I probably will write after Friday when I see Dr. Halstrom.

3 a.m.

It hit at about 3a.m. Funny how I know it's coming and yet it surprises me every time.  I did all my tricks in the night and woke in no pain. But now it's coming back.  I talk a good talk but when the storm hits it's hard to keep positive.  Pain and I will never be friends. Makes me quite grumpy. Pain is like a room mate. Like a bad room mate. Just have to remember that it won't last forever.
6/17/10
This attack was short lived. What a relief!  Only about 24 hours Maybe a bit longer.  Wasn't too bad.  I'm stll going to go see Dr. Halstrom. Can't hurt might help.
6/18 -it came back during the night.

Analogy

Tuesday June 15th
So I just drove home from a relatively good day at work.  I thought of this analogy connecting the weather to my eyes and health in general.
Before I start, I am on the edge of a pain attack.  I even called Dr. Halstrom's office today and will go talk to him a week from Friday.  I've done a lot of reading on the Trigeminal Nerve but I actually want to talk to a real doctor about it, I don't want to do this by myself.   However, I'm not quite ready to go to Mayo for it as I'm afraid it will be a bigger deal than it has to be. I want Halstrom to tell me when he thinks I should go.

The problem is with each attack the pain grows a little each time.  Like at first it was the surgical eye. then the left eye for 3 months.  Then back to the surgical eye. Now it's pretty much the surgical eye, the top muscle, than it's below the eye, then next time the pain hits, it runs from my 2nd branch of the nerve, across the cheek bone  to the top of the ear, the temporal muscle.  That lasted several pain episodes in a row. Then it went to to the jaw the next time, keep in mind this is IN ADDITION to all the other spots all at once.  Now today I got concerned when I felt it strong behind my ear.  One time a few weeks ago just for a short time like a half hour it went to one of my teeth. Than stabbed me for 30 sec. in my eye muscle.  So how far is this going to go?  I don't know, no one really would know.  But I'm not as worried just want to be preemptive.  If I wait til I'm in severe pain I'm not going to be thinking as clearly as the pain clouds my thinking.  So I called Dr. Halstrom as he has been the local Dr. that has helped me with my other severe pain issues.
So back to the analogy.  It poured rain on and off today.  As I walked out of work the sun just came out and lights up all the rain drops and it looks so beautiful.  Keep in mind I am listening to  this old album as I drive home, by one of my favorite musicians, and I've never heard this album and it's fantastic, acoustic blah blah blah. But it's all adding to this beautiful drive home.  There are these massive cumulus clouds which you know are powerful and can be dangerous but now are just beautiful.
Well, I compare it to my health, my eyes right now.  For the most part my eyes are amazing and the view is so great!  Like a perfect day, or the way the sky looks right after the storm clouds clear.  Some days are extra great like when I pulled in the driveway to look behind me to see there was the giant rainbow.  (very cool!)
Then some days are rainy with lots of lightning and thunder.  Or worse yet severe cold!  But you know the sunny days arnt' going to happen every day and the rainy days are going to come too but then they too don't last forever.  You have no control over the weather.  Just like I have no control over what my body decides to do or not to do.  I just have to accept it and find the rainbow in it all.
So maybe the pain will hit again, I'm going to work with it and just wait til the sun comes out again.
How's that for an analogy?  I'm going to have a gin martini tonight and see if any more analogy's come to me :)

Two choices

I gave myself the 'day ' off.  It feels great!  I decided to chuck all my normal schedule today and skip my volunteer work today to enjoy the peace and quiet.
I am always WITH people.  Jim is gone working all day, and our post grad. student will be gone all day today too.  So I thought I'd enjoy having the day to myself. I have about 10 min. to write what I was thinking on my way home from Dr. Brent's where he did acupuncture on my eye. I thanked Dr. Brent for humoring me.  I thanked him for being humble enough to trust me and tolerate my theories. Like when I tell him I think I need to be adjusted here or here.  He listens to me. But then he confessed today that 97% of the time he runs the show and says to other patients, " Listen! I'm the Doctor here!"  Kinda strange how he likes to remind me I am not normal.  That never sits right with me.  I think all the other people are not normal. :)  How can people not be intune with their own body?  Why wouldn't you do research on your own health.  Why wouldn't you do your homework before you let someone take a knife after you while you are SLEEPING!  Hello?
 This confession led me to one small realization.  The Doctors I have had good results with and got answers with are the ones that are willing to work WITH me, not ON me.  The ones that are humble and real enough to look at the whole picture not just THEIR experience and their take on problems.  I have this Podiatrist that wants to do a basic foot surgery on  me, but  my gut says no! get a different Doctor. He is one of the 'best' in the area.  Something is just not right when I meet with him.  It starts with making me wait 45min to an hour in the waiting room.  That tells me he views his time as more important than others.  Then he sits there with his arms crossed.  Now that I think about it anyone else and I'd see right away his body language says , "My mind is closed for business"  I hate to tell him I'm not going to let him do surgery on me.  His wife is an angel and a good client of mine.  Oh well.  My foot really smarts at night so I know I will have to do this sooner than later.
But here's where the strabismus ties in.  Ever since yesterday when Reg. said what she said.  I've been thinking.... today I am back to stinkin grateful.  I want to stay in grateful mode.  It's better here.  I have two choices, this is what Reggie pointed out.  On one hand I can dwell on the fact that, yes, my only experience with eye surgery is that I eventually go bad and have to do it again.  OR I can look at it and focus on the other hand.  This surgery has been different from the get go. I had a little miracle.  Little to others, and they may shrug like, 'oh, good for you'. But for me it was a HUGE miracle.  A dream I never even had the courage to even dream of.   I pinch myself once in a while when I am holding my head straight or even tilted to the right and I see straight!  Never imagined.
Can I just say that the biggest surprise of this surgery is the RANGE of emotion?  I really wish I was a guy and didn't have this much emotion!  In the past 7-8 months I have experienced the greatest anger I have ever felt towards any  human ever!  And the greatest joy I have ever personally felt.  The greatest inner contentment followed by serious doubt.  Doubt in that I wonder, is this real?  Am I going to wake up tomorrow and find it was a cruel joke?  Maybe.  But it's a choice.  I need to stick with the side that says, 'Greta, you did get a miracle.  It really happened.  Enjoy it. Don't worry about the future cuz no one really knows what the future will hold.  There's now way of knowing.
Yeah, I'm going with that - "I got a miracle"  Now I just need to embrace it.  I'm almost too scared to get my hopes up this far.  My experience has always been seeing the other shoe drop.  I'm crossing my fingers hoping that this time the shoe won't drop.  This is it.  It worked!  Yeah!

Ha!  Jason Mraz is on and the song is, " the remedy"  the chorus " I won't worry my life away"  Too Funny. Reggie always says things happen for a reason.  Plus yesterday when we were talking, " Let it be" by the Beatles was on and she pointed it out!  TOO FUNNY!

Not out of the woods yet

There's not much to say but that we're not out of the woods yet.  It's too bad because I had NO pain at all for about 12 days.I really thought I was done.  Now I can feel I'm on the edge of an attack.  I woke yesterday with my eye muscle sore to the touch. Then today it is escalating to the whole quadrant, and it's only 8 a.m.  It's a bit of a worry because I don't understand why, just have to roll with it and ibup. up. Also, my eye seems quite dry when in pain. The problem is that what I've read this is sounding like a nerve problem. I don't need nerve issues.  How it can be quiet then out of the blue flare up.  At least I know it can also quit hurting at anytime.  We'll see.  I haven't had acupuncture for a couple weeks. So I'll go do that. Just don't have time to go til Wednesday.

6:00p.m. I had strong pain radiating to different spots on my right side of my face and head (4 to5 on pain scale ) til 1:30 when I finally laid down for a half hour.  I had taken 3 ibup. at 10:00 - no relief.  I feel better if I rest and stop using the eye.  I felt better after my 20 min nap. Then with a mild eye ache walked into this outdoor party at 2:30 just as I said hello to someone I had these repeated stabs in my rt eye sup. obliq.  It was actually stabs.  Quite startling.  I couldn't look up at the guy I was talking to when it happened it's like the eye wouldn't look up.  Then just as quickly as it came - all the pain left.  How bizarre, how bizarre.  So now I am not in pain.

Last Post?

I have no pain.  I'm very happy.  It feels like I can breathe again.  I am tilting a little more than I'd like, and I have seen double more the past month or so.  But I'm not in pain.  I know my eyes are better than they have been in years.  This is the little window I was looking for.  I don't need my eyes to be perfect.  I was just hoping for my neck to find some relief - that has been accomplished.  And now, no pain for a whole week, no jabs nothing.  I hope this to be my last post on pain issues, maybe last post for the entire blog. I have this great feeling of peace.  And I am very grateful.  I feel blessed and that I am a better person for this whole experience.  I often think of my little team at Mayo and wonder what they are up to and if they know how often they cross my mind and how I  feel indebted to each one of them for different reasons.  There are still some very good, generous, caring people in the world, plus they're smart and dedicated. I thank God for this often.