The Conclusion

I just drove the three hours home from my one year check up. I love being by myself and mulling over 'things'.  The summation: It's all good.
I will eventually go to visit the pain department and hopefully get some help with this chronic pain.
I should go back in 6 mo. to a year.  I'll probably go in a year as I really don't for"see" having any problems.  My eye function is remarkable if you ask me. I'm sure if you slapped my view of the world on someone else they'd be mortified.  But I am completely pleased.  The pain is also remarkable, but that's for another blog.

So to sum up this blog.
I need to end it.  It has served it's purpose of logging the journey I took this year.  I will love to reread the days when I was just discovering what a miracle single vision is. Single vision and NO TILT!  I was surprised at feelings that came up regarding the previous years since my last surgeries - so I had to work through all of that.
Dr. H  mentioned to his students how complex this case was or severe the head tilt.  That always baffles me, I don't feel complex or severe.  But I am coming to grips that my BODY is complex and "a typical" as the Dr. stated.
I guess I already knew that.

I will, no doubt, check the blog for messages or stats. But I'm really not going to blog anymore on this subject.  There is over 140 entries!  I feel a bit like "Forrest Gump" When he says, "And that's all I have to say about that"


I also got a hilarious facial after my appointment. But that's a different subject you can read about it at gweisman.blogspot.com.

5/17/11 - received a cortisone shot for 'trochleaitis'. Shot wasn't bad at all. The dr. bait and switched me but I don't care.  Lets just hope it works. Diagnosed by a neurologist today with Trochleitis triggering migraines. I made a youtube video about it as when I searched you tube there was not ONE person on the WORLD WIDE web who had spoken about this that was not a Dr.



August 1,2,2011. Went to pain clinic. I had a migraine almost every day in July but Tuesday August 2nd ended an 8 day migraine. And it only stopped due to imitrex. I also had to run to eye doctor while at Mayo because my rt eye has developed halo's.  Like 4 rings around all street lights, and head lights at night.  Dr. said it was just because my eye was very dry and I had an old scratch on it.  I'm a bit concerned as it's not getting better. but theres no alarm. nothing to do about it. Just the way this body goes.  Idiopathic, co morbidity. 

Oculocardiac reflex

I should not be blogging right now! I have 8 million things that need to be done TONIGHT.  But knowing me...
I checked the dumb blogs audience and search words that people use when they come across the blog.  Someone searched "bad pain after strabismus surgery"  it got me thinking...
I never searched the WWW to see if anyone else had trigeminal pain after this surgery. So I typed in "strabismus trigeminal nerve"  I again got pointed to this book co written by David Coates from TX. ( I recognize his name as I remember papers written by him and my dr. jointly- so I figure they're buddies - so his book caught my attention a few times this past year ) anyway, chpt. 6 is on Oculocardiac reflex.
I think I may be on to something here.  It would explain why my heart during surgery was bradycardia then shot up to tachycardia.  It also affects the trigeminal nerve which led to the vagus nerve which leads to the whole parasympathetic part of your whole heart beating thing.  I think the nerve got hurt during this. No fault of anyone. The article said things can be done perfectly but it (the reflex - not trigeminal nerve damage) still can happen.  It kinda makes sense.  I learned alot.  I'm kind of excited.  So far it's the most logical thing I heard or in my case, read, yet.  Cool huh?  Now I dont' have to worry about future surgeries and my heart going all brady again as it was an eye pressure thing.
http://books.google.com/books?id=4oqo-LMSV_kC&pg=PA81&lpg=PA81&dq=strabismus+trigeminal+nerve+pain&source=bl&ots=5AGbyceDpg&sig=ow8oGP8KJiRmcw0qBjb5Z1NL7dQ&hl=en&ei=tDffTNHHOIGnnwfcoLXdDw&sa=X&oi=book_result&ct=result&resnum=7&ved=0CEUQ6AEwBg#v=onepage&q=strabismus%20trigeminal%20nerve%20pain&f=false

8/25/11 - editing this post much later :  wanted to post that after this I later developed a rare heart arythmmia called idiopathic fascicular ventricular tachycardia.  I think I had been showing signs of it all along.  So the reflex scene in my strabismus surgery was no surprise looking back.  I now to this day have bouts of tachy vs. brady every day.  It's just the way I am.  Idiopathic, comorbity Me.

No pain just vein Early signs of Loeys Dietz iv

It's not a stick, it's my arm

I think I had NO pain at all in my eye today. First time in a month I think.  However, my vessels in my arm were so scary today.  I did call Dr. G again -this morning, no re call yet. Maybe tomorrow.  I even took a photo of it.  Looks like 3 peas in my arm vein.

Dr. G. called back late this afternoon (Thurs.)  All she knew was this is not classic connective tissue disorder. It would be something else.  She said I could talk to someone in vascular medicine. But I should not worry about it.  Easier said than done.

11.29.2020. Almost 10 years to the week. I got a diagnosis. Of what was going on here in this picture.  This moment, never left me. I never could forget this . It was so startling to see this happen in my arm. When earlier it also happened in my forhead. I remember telling my doctor,”  what if this bursts in my forehead? “ he said, “well. It would just be a bruise.” I said “but just on the other side of the bone it would be a stroke”

I finally had had it, after a series of frustrating events this spring and summer. I finally insisted , I have to have a genetics test. I wanted Mayo. But the short of the long , with one little blood draw... I have Loeys Dietz type four. You can not believe the relief . I’m not crazy ! My family... finally had an answer ! Why we have had so many severe near fatal bleeding issues. My aortic dissection! My grandmothers Neely bleeding to death , my aunts not clotting after open heart. Anyway the relief turned to reality  One  week later and I had my first full body arterial scan. They found a small inner carotid artery aneurysm. It’s small. I’m waiting for another doctor appt now. But I have my answer. This really was and is and always has been happening. My atrial septal defect ... the constant finger, toes and other vessel ruptures. Even the weakness making strabismus in my long list of problems. Loeys Dietz type four. Explains it all. My blood work answered the mystery. 

3/12/21... this we learned after three mris and Mras. Is manifestation of fibrous muscular dysplasia . They found it on the inside of me too. Over a decade to figure it out. But this moment in time..l never forgot. I knew you couldn’t make this stuff up. Now I have my answers 

A Great Dream

I awoke at 5:30 this morning with a huge smile.  HUGE.  For some reason, I was having this very intense dream that  Jim, Dr. H some other Dr. (who I've never seen in real life), a nine yr old boy (who I've never seen in real life) and my self went to see Dr. Egghead.
There he was sitting across from us and I was sitting all slid down in my chair wondering 'WHAT AM I DOING HERE?"  what do you want me to say?  I have nothing to say to him.
Egghead was being nice and sweet to the 9 yr old boy and then he made a sarcastic remark to Jim about his jeans. In my dream, Jim had these awful ripped up jeans on!  And I was so embarrassed by that.  But anyway...
So there we were, There was an uncomfortable pause,  Dr. H finally spoke up because I wasn't!  He was quite stern and started in on Egghead.  Then all of the sudden I grew a back bone and started in and Dr. H sat back and let me speak my mind. I was controlled, mind you.  Asking questions, rhetorical questions.  The part I remember clearly was when I emphatically stated, "I don't care how stinking good you think you are at your job, you can always learn more! Always!  You are never done learning!"  then I grabbed his pudgy little chin and kinda shook it and said, "I'm just so glad I had Holmes to clean up after your mess!!"  
And that's when I woke up.  Smiling.  This was a nice change from all the dreams I had waking up crying and mad.  Now I woke up smiling and happy.  It only took me a year. :)

A breather

As I drove to work I stopped at the bank and as I sat waiting for the teller to process my deposit I realized I feel GREAT!  NO pain. I had like a whole 24 hours with out distracting pain.  I had one little 30 sec. stab. but that doesn't' count cuz it was 30 seconds! I couldn't wait to get to work and start in on my little faces in wait.
I realize that I am quite invincible when I don't have pain.  I am excited and I have a lot to bring to the table.  That's why I can't live with this nerve pain anymore.  It's sucking the life out of my life.  I love it when I have these windows. It tells me why the pain is so frustrating, it's because life with no pain is so great! I just wish it would last.  This last two weeks was rough, pain wise.  I did have about 3 hours of eye pain today but it wasn't bad enough to even take ibuprofen plus I was busy and didn't have time to take something.   It's been gone now for several hours and I just feel great.  It was a nice relief today not to have it.  A breath of fresh air. I'm just going to enjoy it because you never know what the next minute will bring.

One week left of the blog

So we're about a week left of the blog.  I've grown accustomed to blogging  it'll be tough to break the habit.  I'll have to find a new pass time of where to store my little thoughts.  That being said.  I was in almost no pain today.

The trouble is, when I am in pain, it is very real and limiting at times. But when I'm not in that intense pain, it's not too bad. And I can live with it. I feel the eye muscle almost all the time. but it's just uncomfortable not painful.  Well, probably 20-30 min out of the hour I feel it.  Today was a great day,  Very little eye pain/discomfort although I did have one good jolt to the rt. sup. obliq. while I was talking to Jim, interrupted my thought and just had to wait the 30 sec. til it passes.  Then, it's past.
It was hard enough to build up the courage last week, when I felt the intense eye/face pain and my blood vessels were going crazy, to call the Dr.'s.  Dr. G called back but I just don't want to call and bug these dr.'s any more than I really have to. I wish they could see me when these things are actually happening.  When they're not happening, I don't know really what to say.

Group therapy ;)

So I am typing this at the hospital in Hastings. My grandfather, who has severe parkinsons fell yesterday out in his yard and broke his hip and I am sitting here in the dark with my little phone watching him try to sleep. Long story short, I got to talk with my aunts and uncles and compare notes. My uncle Jerry has had multiple eye muscle surgeries and gone through his own nightmare with nerve pain, following a serious accident 15 years ago. So I learned things from him. Then my aunt Nancy and I talked a little about knees dislocating. Of course my other aunt Gail was here and my grandma, and I can see my future in them. They have survived somehow, by the grace of God. It gives me hope. I'll be okay too. What's nice is they all can still laugh about it. Truthfully, it feels good to see people who look like me and know what it's like to be atypical. I don't feel like a freak when I am with them. I have more understanding.

Knee

My knee partially dislocated today.  This is the first time for me.  It was very scary. I was just getting into my car when the back of my knee gave out.  I had to sit for a minute to figure out what to do. Then opened the car door and set my leg out and moved it back into place.  This is a sad day in the view of someone with a connective tissue 'issue'.  I don't have the heart to tell Jim. I don't know what's happening lately. But something definitely is happening.

Vein Issues

I wish I was talking about my 'vain' job.  But I'm not.  My blood vessels are acting up again.  My left pinkie has been rupturing 3 times in the past 24 hrs. 2 times at work, the finger goes numb until the blood moves out of the finger. Then tonight during a mtg. my left arm started feeling funny around my wrist.  I looked down to just watch the veins start bulging.  It even wiggled a little as it grew. I nudged Jim and showed him. After 10 min. it went away.
Guess what? As I type this, my pinkie ruptured again.  I give up.  Freak of nature in full swing.
My eyes weren't too painful today. So that's good.

6:35p.m. - I called the genetics dept. at Mayo this morning as she once told me to call her if I have any other blood vessels rupture.  She called back but of course I missed it as I was at work. UGH.
Dr. H never called back, I don't know if his secretary forgot to give him the message or he's super busy or I finally drove him nuts and he can't bear to talk to me. :) I'm hoping for one of the first two options.  Just wanted to get into see someone about eye/face pain.

strong left side pain today.  Then it switched back to it's usual right side. Probably a 6 today. In jaw and infra-orbital nerve area.
10:33p.m. I had to take a tramadol and benedryl.  Pain is quite acute in my right eye.  but it's more a general area like the entire orbital area.  all around the eye it feels as if I got punched really hard.  It doesn't radiate too far just to the top of the ear like it always does.
Hope not to stay awake itchin to high heaven.  Oh well.  Tramadol feels good , besides the intense itching part. Like a big ol' glass of wine.
Sunday: Rt eye pain was bad today. I had to go lay down in the library at the Kingdom Hall today.  I took two ex. st. tylenol - no affect on it.  The eye was not wanting to function.  just want to close it. feels good to just shut it and lay down.  I don't sleep, just need to stop using it.
Tues.  8 p.m.  This morning was bad on rt side - I just realize I can't keep doing this.  I have too much to do, I can't wait til January like I wanted to, to go have Mayo look into it.  Very frustrated.  On a happy note.  I loaded up with pain relievers and did lashes and they went the best yet.  Duck to water!  Today, check with me tomorrow, might be a brick to water. :)
Wed. Nov. 3rd - today was happily uneventful in the pain department.  I took a dilaudid last night before bed as my eye was a low 3 on pain scale.  I was hoping to knock it out. But it kept waking me up with pain and itching inspite of the benedryl.  I had my normal eye feelings today but wouldn't say it was pain. Who knows?

Nicest compliment....

So today at work I had an older client in.  She comes in for a facial every 4 to 6 months, hard working farm wife, maybe 70 yrs old.  I don't remember exactly what we were talking about when she was telling me that she always notices peoples eyes.  Well of course this got my attention.  Shortly before this, she was sitting on my table and I was sitting on my little stool, she was higher than I was and that is my weakest eye position. So I raised my stool to be higher to talk to her.
When she made this comment on how she notices eyes. I couldn't help but ask, "what do you notice about my eyes" fearing she would say, well your right eye is elevated.  Instead she said, " you have tender eyes'  Wasn't that sweet?  It sounded like she said tenderize.  Ha ha.  Then she added you could tell I was kind by my eyes.
Well, I just about started crying but that would just validate her comment and we can't have that!  But I was glad she didn't point out my asymmetry.

Yesterday I concluded my eyes work just fine for doing this detailed eye lash work. I am so pleased. Then  today, I learned I have a healthy fear of performing eye lash extensions.  UGH.  What did I get myself into?  This girl I did today, her eyes kept twitching and twitching then she couldn't keep her eyes shut.  And there were like 3 hairs growing out of each follicle. Making it nearly impossible to isolate one single lash.  The worse part, it is very easy to get the tiniest bit of this super glue on the bottom lashes, GLUING THEM TOGETHER!  Top to bottom.  Okay this is not dangerous - not good, but no danger.  The danger comes when you go to separate the top from the bottom.  The things I had to do to separate this few lashes.  I'm not proud of.  This happen to two of my "test" people. Their fine.  I know from my own eye procedures what the dr.s do to say, cut stitches and that's how close I was to their open eyes trying to free there lids from each other.  I don't know what I got myself into. I"m going to call the trainer, I need a pep talk.

My amazing new eye functions

Okay, I have no time to write, I have way too much to do but am just ecstatic at my eyes today.  I did eye lash extensions for about 5 hours today.  I gotta say,  I nailed it!  My eyes were just amazing!  They were doing really hard things, the best part is, THEY DID IT!  Tiny little lashes, then looking through a diopter.  I tried reading glasses, nope didn't like those,  tried my Opti visor - it was okay, made me dizzy a bit,  but the plain old diopter, that's my favorite.  That's the way to go.
It's just so delicate a job. And I did it.  I'm about 75% better at it then when I started.  I'm so excited.  I really hated doing lashes at first. Now I can see it's kind of addictive.  I can't wait til I'm good at this.  I'm just so happy  with my eyes today.  I guess I appreciated how good I was doing when the younger girls I was teaching were doing things much worse than I.  Like poking the client in the nose.  Ha Ha. It's not fair to them though I'm used to working through a diopter.  That's a battle in itself I guess.
I'm just so pleased with the function of my eyes today.  Grinning from ear to ear.

Tramadol

I took one 50 mg tramadol before bed as my back and eye hurt last night.  Should have taken a benedryl right away with it.  I itched so bad it was reeeeeediculous! I finally took a benedryl at 1:15 a.m.  so I could itch less.
How can you itch like that way inside your ear?  Just thinking about it reactivates the itch.  Like there are a million fire ants in your bed.  But, no pain.  Again, back to the theory, life is a trade off.

Figuring out a pattern

I have been feeling so great. And then wham o.  I love the part where I am always surprised when it comes back.
Baseball bat to the head.  I woke up with this mild pain, 1.5 hours later it's full blown to the point I want to log it.  I called the chiro. but he's not in and wont' be til later when I'm working of course. And i have to teach that idiotic eye lash extension stuff to two co workers today. It takes all I have when I feel good. That should be fun.  And it's Friday so no chiro til Monday maybe.
Last Wed. nite right before bed the vein thing happened again while I was talking to my ma on the phone.  I'm getting used to it so I told my mom, if I drop the phone and you hear nothing just call 911.
I just love this body I've been given.  Wonder if I can return it. -  J/k. I'll go drug up and see if that will knock it out.  It's going to be one of 'those' days.  I have a full book today and ready to be my best, then, bat to the head. But then, it could magically go away, it does that too at times.
11:15p.m. -  pain was intermittent today not bad until the OTC pain meds wear off then just have to reload.  I did have a martini tonight and that does get rid of the nerve pain for a good 1.5 hrs.  Very very tired tonight, can't help but nurse the tilt.
Sunday Oct. 24th. - much of the day yesterday my sup. Obliq ached to really hurt.  During the night it was quite bad. I took 3 ibup. about 3:45a.m.  I think it helped take the edge off of it. I'm quite frustrated.  It was pretty intense. I always feel like I have this pain monkey on my back. I have to look back and see exactly when I've had these.  Trying to figure out a pattern.

One year

"a few of my favorite things"

Today is my one year anniversary of my last eye surgery. It also marks one year since our little Elijah was born.  I know this post says I wrote it at 8 a.m. and I did. But I am editing it at 9:25 p.m. after spending a bit of the evening at Elijah's house with him and his parents and some other friends.  The photo you'll see Elijah on my lap and my favorite 3 year old by my side with his loyal dog.
I was a little emotional today and actually kept my thoughts to myself about my eye surgery anniversary.  I was around a variety of people but just told them it was my one year anniversary. I didn't tell them how I feel about it.
Last night I had trouble sleeping at first because I was thinking so much of all the ways this surgery has benefited me.  It wasn't til I spoke to my Nancy, who is now in hospice that I actually cried  little out of shear joy. And she is the only one I really explained how wonderful this whole year has been.  I feel blessed to have had this unexpected joy and success.
 I know a lot of people with Strabismus are afraid of surgery. I understand. I was terrified. But I'm glad I overcame my fear and had one more surgery. I just want to say don't give up.  Don't loose hope that maybe some one can fix your eyes, even if someone tells you theres no hope.  There's always hope as long as your alive.  I lost my hope for 10 years without even realizing it.  I can't believe I lived like that for so long. It's just been a great year.  Well, at least the most interesting year of my life. That's for sure. Today is a good day.  All around.

This blog's audience

Interestingly, I usually get on average about 13 hits a day on this blog from all over the globe.  Today. 87.
Brazil had 18
Canada 18
South Africa 17
USA -28
Australia
S.Korea
Lebanon
Uk
ETC

Why so many all of the sudden?  I worry my post labeled "Evil Plan" is getting the wrong kind of attention! HA - it's not real evil people. Just talking about eyes here. Just a figure of speech!  Lighten up. :)  Bhaahahaa

New things I'm learning

Well, today I did a rather scary thing after 4, or technically, 5 eye surgeries for strabismus, and 3 adjustable suturing's.  I went and got training on doing something for my job, called 'eye lash extensions'. It's very tedious work, VERY!  Frankly, I have no interest in longer lashes for myself, but the rest of the world doesn't feel this way.  It's all the rage in vanity land.  I was worried about if I could 'eye' up these little lashes and then be able to slide them on to someone real lashes.  Only after you drug it through black super glue and have isolated one lash at a time.  Then you coat the isolated lash with the super glue and then attach the false lash.
Plus you really do well to where an opti visor.  Which is so attractive, I might add.  I'll post a photo. It's pretty funny.  I was worried about depth perception because I already have some trouble with tweezing at work. I always think the hair is closer to me. It is a little tricky but I think it went pretty good. With minimal swearing :)
My rt eye does ache right now but that could be from my nerve issue,  I got a few good stabs even before we started so I don't know if the aches I feel are from looking down thru a diopter or just my normal pains.
Anyway, it was fun to try something new.

My evil plan

So I go back for my one year check up Nov. 17th. I panicked about this most of September as  my eyes were really bad! Tilting and double vision.  Turns out it was not that big of a deal as I was treating my back with muscle relaxers. And crazy thing, it was relaxing all my muscles, including my 11 eye muscles. ( Yes, I said 11)
  However, for some unknown reason I do dread going to the eye dr. even though he has been nothing but perfectly nice and tolerant of me, my emails, my stupid humor and silly gifts.  I just hate going to the eye dr. I'd rather go to the dentist or worse, the Gyno!  I hate the camera that takes my photos.  I feel like a freak a zoid in my Mosby's medical dictionary. Only your eyes don't get blocked out to protect your identity.  I keep telling myself it's not a big deal. And I do feel better about it now that I know that muscle relaxers were to blame.
The local eye dr. who referred me to Mayo comes into my place of work.  Lately She's been each week for 3 weeks.  She is so nice to everyone and so congenial to me and always asks questions, very specific questions about my eyes and my facial pain.  I'm trying to convince her to come with me to Mayo. I know there is about 33% of her that really would love to go and meet Holmes.  I know her enough to know this. ( esp. after she told me Ginny no longer works there.  I'm bummed Ginny and Sarah won't be there.)  If she comes, she and Holmes can get in a Juicy conversation and they'll forget I'm there and I can slip out. They won't even notice. That's my plan anyway. :)

10/16/10 - Saturday evening -  I was laying down for a bit this afternoon and thinking. -  Thinking I am grateful today.  No eye/ face pain to day.  Life is much nicer with no face pains. Now if I could just get my back to cooperate.  Hmmmmm....

Oh! Muscle Relaxers!

Sometimes, I am , an idiot.
So my back is doing better.  It was sort of sore last night, so I thought hmm, I should take my muscle relaxer before bed.  Then I realized I hadn't taken it for a few days.  The short of the long...
I had taken about 26 muscle relaxers since I threw my back out earlier in Sept. The last few days I have been in eye pain but my tilt is better.  I think the muscle relaxers were the problem.  I was feeling so tired and tilting and seeing more double.  I was scared.  Now the last few days I'm coming around.  DAH!  It's because I haven't take that darn muscle relaxer.  Sometimes I'd like to kick myself.
Anyway, GREAT RELIEF! I was so scared it was relaxing back to broken.  No, it was just relaxing due to muscle RELAXERS!  Greta! Really? Took you a whole month to figure this one out?   tisk tisk tisk.

Oct. 15th  - after a long day at work...now what do I do for my back pain? I was on the muscle relaxers because they worked.  back to gin therapy.  That's not good for ya either. but at least the head tilt only lasts like 2 hours.

Things I can do..

I can lay on the couch and watch tv with both eyes open.  This is good people.  I've always wanted to do this.  I figured out I just have to lay on my back and turn my head to the right.  I love it.
And yes, the pain is gone right now. Wooo Whooo

Dah! Acupuncture!

Today is a level 7 on the pain scale. Just feels like a bat to the upper cheek bone moving over to the top of the ear.  Didn't pay much attention to it,  thought it would go away. But no.  The Excedrin should work soon.
After yesterday's conversation with Jim, he thinks I just need to stop eating all Gluten, and that will fix it.  Ugh. - it's frustrating.
5:45p.m. - pain is better with meds, then comes back when meds wear off. No biggy. Ironically, I don't feel like I'm tilting all that much!  My eye is very dry today.  I give up.  I have two words - eye ectomy
10/11/10 IT's a lovely sunny, Monday. this pain is pretty bad today.  was during the night too. tylenol didn't touch it.  I've already taken 3 ibuprofen 3 hours ago - no relief.  It's like a very focused migraine  - focused right now in my rt temple.  I feel like the vein is swollen but it doesn't appear to be.  my eye is a desert and I just need to close it.  I had to go in for one client this morning and apparently you can see the pain on my face inspite of my words. As my co workers picked up on it asap. UGH.
I was going to go in my volunteer work to distract myself but who are we kidding.  I'll tell you if $$ wasn't the issue I would go to Mayo and see if someone could figure it out. My luck they'd be like other dr.'s and shrug and say they don't know either.
6p.m. I'm such an idiot!  I laid down for one hour and slept.  When I woke, it dawned on me! Dah, go to Dr. Brent for acupuncture.  So I did and I had the afternoon off from pain.  I have little twinges of pain. but better.
Why didn't I think of that sooner!

My beautiful head tilt...

At work today I kind of figured out why I've been off cloud 9 for the past 6-8 weeks.
I just feel like the fun is gone from my eye surgery.  I miss those days I was floating on this cloud of joy.  It wasn't realistic to stay up there. I knew I wouldn't.  That's part of the reason I started this blog/Log.  So I could go back and read those days when I was acutely aware of the gift I had been given.

My head has been so tilted since my last major pain attack Sept. 6th. I feel like maybe 75% of the time. Which if "Pollyanna" were here she'd say, "Well at least it's not 100%"  then I'd punch her! Ha!  I thought I was just tired, I had a cold, etc.  Now I wonder is this a phase or a development. This makes me quite concerned. I seem to be always trying to correct my tilting. However, my neck doesn't' hurt too bad, once in a while it does, then again, I take a lot of pain meds.

  Today, I was doing a facial on a person,  mind you it's very relaxing work. I was staring off while I massaged her arms.  Well, I realize at one small point I am really tilting!  So I straighten up.  I literally at times can count, One one thousand Two, before my eyes adjust. So they'll go double than comeback to single. But you can watch it in Slow Mo. This happens a lot in the morning when I am tired.
I was with my whole family a couple weeks ago for 3 days, after one day I thought to ask my mom, "am I tilting?" She said " she saw it but didn't want to tell me."  Lovely, and my mom doesn't mind telling me a bit when she hates my hair or I need to put some lipstick on.  But this? She doesn't want to tell me.

Anyway, I've been feeling this for a while.  I just finally found a way to put it into words.

4 hours later...
I ended up telling Jim about this going on.  Didn't go well.  Memo to self.  Keep it to yourself, oh, and your blog.

It doesn't matter...

I awoke about 12:40 a.m. just wide awake and my mind for some reason just started in again on Egghead.  Just like back in November or December when I first awoke at about this same time of night all the sudden very much aware and very livid at my former eye Dr. Why? So,  I had to get up.  Read my bible.  I'm on 1 Chronicles 1-4.  Try and read that.  That will put anyone to sleep.  It's all lineage.

I suppose it's because the thought crossed my mind when I saw my local eye dr. is on the books to get her hair done right before she goes to this big conference for eye Dr.'s.  Then I remembered, oh yeah, that's right.  Holmes may speak to egghead this month.  That's all it takes.  I have still racing questions.  But I have to keep telling myself. It doesn't matter.  It's over, it's the past.  I can't let my brain get carried away with all of these questions!  They are pointless! What's done is done Greta, move on.

Which I had been doing. Totally forgot, or so I thought. ( hey that rhymes!)  But I am still intrigued as to how the mention of Egbert triggers this involuntary emotional response.  I hate it!  It was so long ago.  How do I even know I remember it correctly? Doesn't' matter. See, these are the questions that start.  Then one leads to the next and to the next.  I just have to keep repeating to myself it doesn't matter, It doesn't' matter, it doesn't matter....

Doing Better

Today was pretty great. The weather was so beautiful with all the fall colors.  I got to go in my volunteer work. I got one new cleaning job and delivered another bid and had a second meeting with a potential client.  So that was good.   I went to the Chiropractor and he helped my eye.  5 different needles in the exact spots I have trouble with.  He even asked to bring in his fellow Dr. to show him what he did - kinda strange. It's experiences like these that contribute to the 'freak of nature' line of thinking.   But he said it's not every day someone will let him put needles that close to their eye.
My heart was fine today.  I feel rested.  I didn't feel like I was tilting but a photo was taken and, yep, still tilting.  Oh well, my neck doesn't hurt like it used to.

"I have a dream!"

Mr. Martin Luther isn't the only one who has a dream.
I'm having real trouble with my eye and head tilt this week.  Problem is I can't describe what is exactly going on. You know what? Sometimes, I don't have a clue what is going on.
I've been sick with a basic cold this week.  Plus my back is still hurting from dislocating this dumb joint in my pelvis.   I did that a good while ago.
I'm so very tired but then today as I sat at the Kingdom Hall eye was struggling and my heart was so goofy.  The rhythm was all over the place.  I asked my friend for her watch and timed it. It was 60 bpm then I felt it change it jumped to 82 p.b.m. I felt almost sick and that I needed to sleep. Yet I felt out of breath.  So I took the car, leaving Jimbo to find his own way home.  I slept for 45 min.  And felt better.  Then off to clean a business.

Since I had that scary episode with my veins popping out of my head all week, I've had renewed interest in what in the h e double hockey sticks is wrong with me.

"Beaker" 

I really wanted to go get help back when I had that killer headache where I really thought I was going to stroke. But I couldn't. Two times that week I really thought I may die. A person should go to the hospital when they really think they're going to die.  Not me.  I know how it goes.  They do all these tests and nothing shows up typical so they send you home with a huge bill and no more answers than when you went in.  Once they kept me for 3 nights and just let me go.  You shoulda heard what I told the Cardiologist I had at the time.  Ha!  I affectionately refer to him to this day as "beaker" He looked just like "beaker" from the  Muppets.  I laugh as I write this remembering how I grilled him about his knowledge of anti inflammatories and how they work.  You had to be there, but I was in a bad, bad mood being locked in for 3 days as they ran every crazy test on me.    Ha ha ha.  I was livid.  But just because you're called a "Doctor" doesn't mean that all Dr.'s are genius'.  This guy was an idiot.  I mean he had to know he sounded like an idiot.  I had distant friends visiting that day when "beaker" came in to discharge me.  They could vouch for what a geek he was. Unfortunately, that was one of the main experiences that make me never want to go to the hospital again.  Earlier this was the same Dr. who told me my aorta was rupturing when all it was, was a scar from the bypass machine.  BIG MISTAKE!

My dream is that I could walk into Mayo. Some department could look over everything, understand exactly what's happening and know exactly what the deali-o is and tell me how to live my life and when to be truly concerned.  I wish there was a place I could go or someone I could call that would know what is going on and not over react and scare me with talk of aortic rupture, lupus, lymphoma, etc.  (These are things I've heard before).  And how is it that you can go to med school for umpteen years and not know  one thing about connective tissue?  Huh??? If I had a nickle for every cock eyed look when I said Marfans, or Ehlers Danlos. I'd have many nickles!
Anyway, I have a dream.   :)

It's back

Just logging here.
Rt. side eye pain came back tonight during a meeting.(thurs nite) First started in the jaw then mostly planted in my sup. obliq. like stabbing little jabs like there is a stick pin in my sup. obliq.  For about 20 min on and off intensely. I had trouble looking up while talking to people.  It aches all around the eye in the normal trail. Infra orbital nerve, then it branches up to the Trochlea but most of the strong pain is from the top of the ear ( I don't know how to spell superior auericularus)  to the infra orbital nerve ( where it comes out anyway)  I have to look back to see when the last time I had an episode.
I think it was the week after the Brandi Carlile concert Aug 29th to Sept. 6th.
I gotta say, everytime it goes away I totally believe "there, I am done forever with that"  then, it always totally surprises me when it returns.  I don' think I'll every get used to it.  I don't think you should get used to it. It's wrong :)
Oct. 2nd ( sat. night). The right eye is smarting. I don't think I could explain how it feels.  It kind of stings, aches, basically, it feels like I just had surgery. It hurts deep in the inside corner and across the top.
Oct 6th - not too bad, this one,  Just an on going ache in that eye area.  Only the sharp attack that one night at the meeting.

Tilting

I think I tilted all day.  I've been quite tired as we drove the 12 hours back from Missouri yesterday, got back at 11 p.m then cleaned two houses this morning then ran up to the hospital to be with Nancy. As I drove and as i type today I am so aware of the tilt. I try to correct it but it's just more comfy to tilt.  I don't see double when I correct it.  I just feel the eye struggle to keep things single.  So do I need to tilt?  I don't know, but it's easier.

Oct 2nd.  I have been very tilted since I posted this originally. It's like I'm wearing a 5 lb earring.  Very tired though with a head cold.  Last night I was so tired my eye did go 'shopping'  I was so tired I couldn't care less.

Laughter vs. Tears

So many "things" are happening right now that it's almost funny.
Really, I have to stop saying how much worse can it get.  Because it seems to just keep on coming!
My back if slowly mending,which is good as I am set to drive to MO for a long weekend to wish my brother fare well as he sets off to be a missionary.  We are doing family photos, blah blah blah.
But then today we are cleaning at a BIG house and the owner brought us lunch, which is sweet, we never get lunch.  I hurt my tooth.  What next?
Oh then  my cell rings and it's my friend saying the woman I've been overseeing with Pancreatic/lung cancer was just hospitalized with pneumonia.
I called the dentist, he thought I could wait til I get back from our trip.  I went to visit Nancy fearing that this could be the final spin for her and she starts crying as I leave.  Which tells me, please don't leave, I may never see you again.  That broke my heart.
Why does everything happen at once?  It's almost humorous.
But not.
This is why I am so stinkin glad my eye surgery was a success.  I try to focus on my great success with my eyes. It makes things a little less painful. Able to laugh at the rest.... well not laugh, but grin and bare it.

Come on Comet!

It just gets better and better.
 I displaced my sacroiliac joint again. Funny how the final straw was when I set my little Elijah down on the floor.(he's the baby born on my surgery day)  Boom! It completely snapped.  And I have a crazy week of driving to education in the cities, and then to Missouri. Plus I'm supposed to clean two houses in addition to my normal spa work.  Oh and I invited 20 people over for dinner tonight before this happened.  Oh, Joy!   No bending for me or breathing for that matter.
  This is when I really start praying for a comet to come sailing towards the earth with my name on it.
9/20/10 - so last night I left a msg on Integracare's voicemail that I need to come in.  They called at 7 a.m.  I of course was still laying in bed and I can't really jump out of bed.  So Jim brought me the phone, I made an appointment for 8 and got out of bed. I was immediately struck with this unbelievable headache.  I had it just before I went to bed and made Jim get me a garbage can as I was feeling like I was about to be sick. A vein popped out on my forehead only in a different spot - right between my eyes. I fell asleep and awoke a couple times with this headache. LONG story short - I used the garbage can this morning.  I have never had a head ache like that before.  Throbbing in the back of my head.  It wasn't a migraine but it scared me terrible.  I thought their must be something in my brain swelling and pushing on the stomach area of my brain.
Jim took me to the chiro this morning and will go again tomorrow.  If that head ache would have continued I would have gone to the hospital. I took two tylenol when I got home and laid down the head ache eased.  So I didn't  go to the hospital.  What would they do anyway? I just was feeling quite desperate.

2 months left of this blog...

I decided today that after my one year check up I'll be ending this blog. 

It's no longer about my strabismus surgery.

My feet are now back on the ground, firmly planted.

I had a great year full of surprises some huge absolutely fantastic surprises, like my head is not tilted anymore! I now can see single almost 100% of the time, I get to see 3D movies now.  Just unbelievable joy!

Some surprises involved unbelievable anger and some serious frustration and a good measure of pain.

I met some great people and found a place where I'm not treated like a total freak of nature.

That being said...

The results of my blood work showed no real inflammation. The sed. rate was 2 ( scale is 0-20 I'm told)

Which means we don't know why my blood vessels are acting the way they are.  I've been having a few others in my feet and fingers. Today I looked down and see a bruise on my foot.  I give up.

Halstrom said, "if the vein in your head pops, it will just leave a nasty bruise"  I understand.  But why does this bring me no comfort?  Oh, could it be we are just one layer of bone away from my BRAIN???? Maybe that's it.

My aunt is convinced, and so is her GP, that we have Ehlers Danlos.  I know little about that. I had been focused on Marfans. I may have to switch gears.  Really, I don't care what I have I just want to know what is going on.  I don't need a name I need to understand what on earth is going on am I a risk for blindness or even a stroke?

It is good to have this blog I guess for days like this when I'm mad at the body I've been given and I can go read about the days I felt on cloud 10 and my feet were no where near touching earth.

2/4/2013 - UPDATE

I ran across this post today and thought I should update here.

After going through Mayo Clinics Genetics department and meeting with the Marfans professor there ( excellent, excellent people btw!!! went above and beyond for me) 

I have what is closest to Ehlers Danlos 3.  But I don't have the right heart problems or eye problems. My mitral valve is fine - yet I've had two separate heart problems both needing surgery- one structural the other electrical. 

I also have been diagnosised with Trochleitis with Trochlear migraine.  And in addition have developed Raynauds disease.  Last year was dreadful. This year its more mild.  

If you're searching the web...

If you happen across this dumb blog because you searched the web and found it.  Please read the following.
A word of advice...
I have recently come to the conclusion that one would not do well to put to much weight into each personal experience.  Each personal experience is just that PERSONAL!  Your experience is yours!  Mine is mine.  This blog, as I have stated is open to anyone to read, but it mainly serves me and my need to express myself and log the progression of 'things'.
  I learned this as I was doing research on Trigeminal Neuralgia.  It only took me about 3 different accounts of strangers experiences with TN.  I have concluded I will not read any more personal experiences.  It's not encouraging.  I choose to hope for the best.  I will read authentic official medical sites of experts on the subject. Not individuals.Maybe that's cold but I have to draw the line, for the sake of my mental health. What I have left of it. :)
  If you type in Scholar.google.com you will get only research articles that are much more reliable.
So if you're reading this, you should know.  I call myself the freak of Nature, so what does that tell you? That I'm a typical case?  No, I dont' think so.  You will have your own unique experience.  Hope for the best.  What's the harm in that?

What's up Doc.

So I went to Dr. Halstrom today -   took a few days to get in. But my blood vessel started bulging again this morning so I'm glad I went in.  He drew blood to check my "sed" level, to see if there is any inflammation. So we'll hear back this weekend or Monday.
 The guy is good and has been very helpful to me. He still suspects Ehlers Danlos, I may have to look into it.  Plus he doesn't over react. He said if the vessel bursts it should just be a bruise as it is an exterior vessel.  So, hurry up and wait.

Sun, Sept 12th
I've been having a rough go of it.  Yesterday during work the vessels flared again more of a headache in my left temple that only lasted 20 min. I have head aches all my life - who really cares. But I don't usually think,' Oh, I hope they figure out not to leave me in the ST. CLoud hospital."  I felt like leaving the room and calling Jim to tell him to transfer me to Mayo.  But the headache went away and I forgot all about it, til, I went to bed at 11 pm.  I was just about asleep when," OH NO!"  The vessel started inflating again.  It's not so much pain as it is pressure, I tried to roll over and get pressure off of that spot but after an hour and a half I got up because I was sure it was going to blow.  And it's not just my forehead, Actually it's now in the temple and above my ear.  Like the TN without the pain, just pressure.  But you can feel it grow and spread.  I was sure it was going to rupture, but it didn't.  I did get up for a half hour. Couldn't find asprin so took 3 ibuprofen, seemed to help, at least I didn't "feel' the pressure anymore.
IF I WERE A HORSE...

latest development

I had a great day today. Peaceful.  I was home alone. Studied a lot, cleaned alot. Did a lot of laundry - so I got kind of caught up on things. Molly, my client/ cranial sacral therpist came to my house on a holiday to work on me.

I did have one really concerning thing happen, About 1p.m I showered and was getting ready for Molly to come, I was putting powder on my face with a big brush.  Out of no where I had this fat blood vessel pop out on the side of my forehead like when my fingers or toes blow a blood vessel. I've never had this.  It didn't hurt at first. Developed into a fat blood vessel that ran down my left side of my forehead then turned to a green line that went under my left eye.  See, I am worried about it but I can't "go to the Doctor" about it, they will over react.  It is probably nothing but looks definitely something.  I had a mild ache around that area til 5 pm when I took two ibuprofen.  Swollen factor lasted a couple hours.
My mom says I should call Dr. Halstrom tomorrow.  He'll want to see me.  I need to discuss getting a pain killer that I'm not mildly allergic too, anyway.  UGH!  This body of mine is expensive to live in.

not cool - this is the freak of nature at full function

Wednesday 9/8/10 - No pain today. No vein popping.  I did a lot today, cleaned a house, volunteer work , and worked at the shop a bit.  I still need to talk to Dr. Halstrom so I made an appointment for Friday - it's the soonest I can get in.  I'll post after I speak to Dr. Halstrom.

Now, I'm just getting plain mad.  It's one week today since 'the the first "strike" of sharp pain at the fair.
It won't leave my jaw.  There's nothing to do about it.  I don't know of any med that works for this pain.  Well, with out terrible side effects.
There is a panicky desperate feeling that comes with this.  If I was at the eye Dr. right now, I'd say, "okay, I'll go visit the pain clinic now"
9/5/10 - No pain today yet.  The pain lasted through til about 2:30 p.m. yesterday.  It ended like the fireworks at the State Fair.  It went for my jaw then up to the eye muscle I had surgery on. Strangely I felt it right where I imagine my sup. obliq is attached to the eye.  Makes NO SENSE!!!!  That scared me.  I was "this close" to a panic attack. But kept it together as there were too many people around as I was sitting in a auditorium with 1500 other people and I probably knew about 700 of them - not kidding. It's like when you get hit and you expect another hit to come, you're whole body flinches and you grit your teeth waiting for the next blow.  That's not Fun I tell ya! Then it went away - magically.
Again, I did take 2 ibup. in the a.m then 4 at noon. But it really didn't seem to have an effect.
I love the part where when the pain is gone, it's like nothing ever happened.  I made it all up.

jaw

Another stabbing incident today this time my rt. jaw. None of these pains drop me like a hot potato but I'm feeling it a lot lately.  I'm afraid for some reason. Afraid of the pain getting worse.  Been having nagging rt side nerve pain. It's all around my eye rt now, and my jaw and my neck hurts- pretty sure the cranial nerves don't go down the neck!  What up?  I'm a little worried. I don't like it anymore.  I'm growing tired of it actually. Especially when I am in the middle of a great day,like when I was at the state fair going to my Brandi Carlile concert and it likes to hit me, like "oh no, don't forget! You have have something that could ruin any big event" or like today I was in this great explanation of "the anti aging cure" with two new employees and then - it stabs me out of the blue with no warning. I got a massage last night and the woman working around my head and face and neck and I was just thinking, "i'm scared, I'm scared, I'm scared"  Nothing happened last night but I was still scared.  I felt it ache while she was working on it. But no stabs.
 I don't feel like I can tell anyone, it's been so long since surgery, I should be all better, they won't understand and they'll just be worried. ( and if you are one of my friends and read this, I appreciate it but,  Please don't bring it up to me when you see me.  I don't wish to discuss it.  I may be having a great day and don't want to think of it when I don't have to - thanks)

10p.m. - I'm done, I'm taking a dilaudid, 5 left now.

9/3/10- well, the dilaudid didn't go as I hoped.  Made me itch like tramadol - tramadol is worse actually, but my beloved dilaudid worried me.  A) didn't magically take a way the pain. B) I was awake a lot itching but then my breathing was surpressed and I can't pee.  Lovely!  But the worst was as I lay there it jumped to the left eye.  See the fear is, if dilaudid won't kill the pain, what will? I know this answer, just wish it was a different answer.  I'm not in bad pain now, rest does help the most for some reason.  I haven't gotten enough sleep lately. Come on Comet! - alright, enough whining on to my typical Friday. 9 hours or work.
7p.m.  I called Dr. Halstrom's office and left a message.  As to what do I do if over the weekend this gets even worse? Cuz going to the ER is not an option, and they would just go and do crazy tests to say they don't know. I just need the pain relief that's all.  They called back when I was working and said "oh you can come in and see him"  UGH!  I already saw him about this and he knows.  They just needed to talk to him. Plus I have no time to come in.  I worked all day.  I did have a one hour break and ran to the chiro. My guy wasnt in so I went to someone else.  Just got adjusted. She didn't know how to do the TN acupuncture Brent does around the orbital bone.
I did have a couple hours with no pain but now it's back, And what's with the Jaw???  That really smarts!  It's back on the right at least.  I hate it on the left because it has no reason to flare up.  I need to sleep good tonight.  I have a big seminar tomorrow.

1 yr questions

I'm starting to think of questions for Oct.'s one yr appointment. Usually,  I just jot them down on paper and bring it to the apt. But I usually loose the dumb piece of paper. So I think I'll enter the questions here on this post and the day before my apt. I'll write them down and put them in my purse.  Pretty smart huh?

1. My eye is slightly hypertropic - is it possible to go from diplopia to amplyopia?  If it is, how do you know when your not seeing out your one eye? or do you just know?

2. Why did I have to have so many surgeries? I keep coming back to this one.
3. Do you think the sup. obliq. would stretch out and relax and I'd need another surgery?
4. Can I get a complimentary blepheroplasty if I have to have another?  Ha Ha Ha
5. How often do I have to get my eyes checked for normal health checkups, and where should I go for that?
6. Infra orbital nerve question - To hard to write.
7. pain issues - fear of not having good pain relief, feel allergic to Tramadol, dilaudid, codeine

State Fair

Well we had a great time going to see Brandi Carlile. I had one stabbing incident that lasted about a minute. When I am not in pain I forget I ever had it and then all of the sudden I get a reminder that this exists and could ruin the one day I was looking forward to for over 3 months. The pain was Pretty strong but very brief , I had to just focus and breathe through it. Then it was gone.  I had a bad headache most all the day before in the same spot. A Little aching today - quite tired! Over all I'd say the pain is getting less or I'm getting more used to it.  I'm going with less.

Saturday, August 28,  today awoke with a bad eye head ache.  Can't shake it.  it's the normal trail that runs under the eye to the top of the ear.  Can't wear sunglasses today makes it worse.
Drugs here I come...

My head says No! My heart says GO!

My brother and his wife are killing me!

Just joking.  But they keep talking to me on the phone and Skype late at night and I'm not getting to sleep.  We're having too much fun talking. Last night I didn't get to sleep til 1:30 a.m. then had to get up early as I have company and had to go clean a house by myself. See, they're leaving soon to go be missionaries so we feel like we have to talk a lot before we can't talk at all. Plus life is pretty crazy for them right now so there's a lot to talk about.

Problem is, is that when I'm tired like this "me eye" hurts.  ( I write this with my Popeye voice) 

Now I have a decision to make,  do I drive down this weekend to M.O. for their massive going away party or do I stay with my plans to go the state fair with my 3 friends and see one of my favorites, Brandi Carlile? Every year we go to a concert at the fair. Last year we went to Jackson Browne at the State Fair and that's when my whole eye blog really began as I remember Mayo trying to get me on the schedule but I said no the first time because I had this concert I was going to.

My head says no, my heart says go.  We all know what the bible says, "The heart is treacherous who can know it?' jere 10:23?

My head says I'll be too exhausted and my whole body is going to pay for this if I go. Plus it will cost me more $$ if I go.And I'll have to miss Nancy's big  oncology appointment Monday.  But my heart says, they're leaving and I don't want to regret not going.  Plus when I typed out a message telling them what my dilemma was,  Jason was like, "yes! Come!"  UGH.  It's not that easy.  But I feel like I'm loosing my twin forever, the only person in the whole world who really gets me.  

It doesn't help I am surrounded by cerebral people.  I don't want regrets people!  What is the right thing to do? I want to do both.  Maybe I'll have to get skype on my phone so I can see them all that day at their party.

(Oh, and on a side note unrelated. this morning I had this strange hot burning chest pain for about 45 sec. in a small spot when I rolled over in bed.  I wanted to write it down so that I could come back and pin point this day if I needed too. my aunt has a similar pain years back and that's when the cords around her mitral valve 'broke')

darn photos

What a great day we had yesterday, long but great.  My two good friends and I headed out early for the Minneapolis Farmers market (mlpsfarmersmarket.com) My goal for the day was to eat as much roasted sweet corn as possible.

 Why am I posting this on my blog?  Well, this photo is fine, I'm actually tilting to the Right!  Which is good.
Now the next photo, is not the best. But at the time of taking it, I consciously thought, " Look, Kari is tilting and for once I am not"  Then I looked through the photos later and Nope!  I'm tilting.  UGH.  I hate that. But oh well.

Desire for Normalcy

Just a note here for tracking purposes.  I've been feeling an episode coming on now for a few days.  This morning I laid in bed, awake but my eyes closed, as I often do because they are so dry I don't enjoy opening them. But I almost always(since surgery) awake to discomfort in my eyes that usually goes away as soon as I get out of bed. but today the pain was like a hot knife in my sup. obliq.  Not a steak knife more like a broad butter knife :0
Now it's noon and i Have to run to work but I have the 'headache' under my eye and to the top of my ear.  And my occipital bone still hurts on the left but in all fairness it did stop for a few days. When I'm tired I tilt- no biggy. just tracking. It's been a while now since I have not had a headache.  Mostly it's been the left occipital thing. I don't think I will ever not feel my eyes, all I can hope for is not to be distracted by the feeling. Today, it's a bit distracting.
8/23/10 FMI - Never did get a huge episode.  Maybe it's starting to fizzle?  Although, tonight I am very tired again and have pain when tired.

"Keep your eye Simple"

 “The lamp of the body is the eye. If, then, your eye is simple, your whole body will be bright;"

(Matthew 6:22)

This was the theme scripture yesterday at the Kingdom Hall.  Of course the scripture is figurative and talking about keeping a simple life and how much happier your life will be.  The speaker compared this to the literal eye and how if things are not in focus you get headaches from eyestrain etc. etc.  But I thought this scripture summed up how I feel about my eyes.  Now they are "simple" or focused and my whole outlook feels "bright".

There is a lot of scriptures about Jesus healing the blind.  On one occasion he healed a man blind from birth, and told him to tell no one.  Well the man was so grateful he didn't care and told everyone even though it meant he'd be removed from the synagogue. He couldn't deny what miracle had happened and was so grateful to have his vision back he wanted to tell everyone about Jesus.  That's how I feel esp eariler. I'm so grateful I can't keep quite.

Seeing Double

It's so much fun to see a double rainbow. It makes me smile.  I'm seeing double, in a good way.

Time to heal

It's been a good long weekend. We went to our convention in Rochester.  My eye behaved. My left side head ache was better but the actual spot where the occipital bone meets the neck smarts like you know what.
I can't believe how long it took me to recover from this surgery. Not just physical pain but I think I learned more about myself mentally this time than physically.  I know that sounds strange but It took me this what 8 or 9 months to untangle from the past 10 years of eye trauma.  Which I didn't even know what trauma til this year.
At the time of the writing of this post I am more than extremely tired and have a week ahead of me unlike most.  But The past month or so I've been thinking how I've come to peace with Egbert and the past - I'm not as worried about the future of my eyes and if they'll need surgery. I just so clearly remember the day after surgery telling Holmes, " Yea, we're going to try to do this in a week because I have things to do, like take care of my friend with pancreatic cancer,"  HA!  9 mo. later!  I'm still 'healing' And still taking care of my friend, who by the way is entering what I call the tail spill.  Let's just see how well the pain stays away with the amount of fatique I think we're about to experience seeing Nancy through to the end.
For now though I see the light at the end of the eye tunnel. And the light is not a train.  Maybe I'll still have my pain episodes but whatever, I can deal with that.

As rough as yesterday was...

Today is much better.  My 6 day headache has been broken! Yippy Skippy.  It's still sore but we're headed the right direction.
My nerve pain on the right side that was so bad yesterday is, at the moment, gone.  Even last night when I went to bed I took two ibuprofen wondering if I should take another dilaudid, as I was in pain, but I chose not to.  That was the point of the ONE dilaudid I took earlier.  My hope was to hit the pain hard and break the cycle.  I think it's working.  We'll see though.  IT likes to hit with out a lot of warning.
But whew! Glad that passed.

8/4/10 - Shouldn't speak so soon.  The left Occiptal headache is back.  Man! I only got one day off.  Besides the pain I just wonder, "is my head tilting again?"  This is my old head tilt head ache.  I don't need this back. This is like old times.  The kicker is also how much time and money I throw at the pain and still it lingers. I'm a little frustrated.  But it's still better than nerve pain.

Come on Comet!

So I went to see Jeremy today he helped the pain on the left side of my head but as he was working about 45 min into my massage, he had my head turned to the right for a long time and then all of the sudden the nerve pain started on the right. It took about one minute for it to fully develop.  This one was bad. Worst one since April.Probably an 7.5 on the pain scale. I felt sick to my stomach, felt like crying,  almost immediately.  Jeremy could tell the pain shifted. Pretty interesting with out me telling him cuz I didn't want to hurt his feelings like he caused it. This was a bat to the head.

I got a pedicure after my massage. The head ache wained a bit then surged.  I went to the chiropractor after that and had him work on it. That helped while the needles were in but pain was very bad on the drive home.  So I went home and took a dilaudid.  Pain subsided mostly for a a couple hours but this warm fuzzy pain is still there.  

I don't really understand, I'm not sure if it's TN or just freak of nature stuff. Thank Goodness for Dilaudid. I don't itch from it either.

Day 5

This morning marks the beginning of yet another day with this headache.  I don't think it's my TN.  I think it's my occipital plate ( This is what I call it anyway)  I need to go see if the chiro can get it back in again tomorrow.  I'm also going to get a massage tomorrow.
This is the kind of head aches I used to have all the time before eye surgery. So I'm paranoid if I'm tilting again.  But someone took my photo yesterday and it didn't jump out at me that my head was tilted. So that's good.

1:30 a.m.

I don't care what you say.  Fatigue caused by my crazy schedule preceded by lack of sleep equals eye pain.
My rt eye was smarting pretty good.  I went to the chiro. today and I had too many other things wrong with me that he didn't do acupuncture on my eye, we opted for fixing my rt leg today instead along with my jaw. Anyway,   I took a tramadol before bed.  THAT WAS A MISTAKE!  Pain is stronger waking me up but now I also itch to high heaven and my breathing is real shallow. I took the dumb pill thinking I'd sleep like a rock and awake for the busy day I again have tomorrow. UGH.
Interesting though now that I think about it. I have been tilting a lot due to my fatigue, so around my left occipital I had pain the last few days then my jaw partially dislocated. Chiro adjusted both of these.  Both irritate the TN.  Every once in a while I create the perfect storm but don't realize it til moments like these.
Eyes!  Can't live with em, cant' live without em.
A few more minutes and the benedryl should kick in and hopefully the itching will subside enough so I can sleep.  Hope I'm not too groggy in the a.m. as I have to be up and at em early and do it all over again.  How am I going to juggle all of this if my friend comes to live with us while she is dying?Guess my eyes gonna hurt more. Oh well.

Tracking the pattern

I went for a short 20 min. bike ride last night.  The wind triggered the pain last night.  But when I stopped biking the pain went away about an hour later.  Now this morning it is back pretty strong under the eye starting mostly with the infraorbital nerve then across the cheek bone to my ear. The eye feels weak and like it just wants to close today. I just took 3 ibup. so should ease up.  You just can't prevent all things that will trigger the pain. That being said, I can live with this level of pain. It's not too bad and at least I can take ibuprofen for it.  The rest of me has been feeling great, I am 4 wks off of all sugar and grains and am surprised to see the decrease in the need for ibuprofen.  Grateful.  I always worry about how much pain meds I take and how my liver processes it.  Over all things are going great just wanted to track these 'episodes'.
8:30 p.m. - pain switched to the other side with a bit of a vengeance. Probably a strong 4 to 5 for pain. 3 more Ibuprofen and no action so I may take a Tramadol before bed.  Hurts to move my left eye too far.  I put my finger back in like last January. Seems to help. I better try to get in to Dr. Brent tomorrow. I haven't had acupuncture for a long time. 

It's back.  It just came on with no reason.  Starts with this headache that runs from the bottom of my eye to infront of the top of my rt. ear.  At least it's on the side that makes more sense.  I hate it on the left as that's just ridiculous!  I'm not complaining here just logging. So later I can see if there is a pattern.  I did have a good long stretch with out pain.  It was lovely.  Felt like a normal person again.
7/15/10 - The pain isn't too bad, with 3 ibuprofen at a time it pretty much disappears til the med wears off. I did have a few very brief stabs in the sup. obliq. that's as crazy as it's gotten so far.  Just the head ache is lasting. I think this is day 3.  I'll go to the chiro. tonight. Maybe that will help.  Pressure infront of the ear makes it worse, sunglasses and crazy hairstylist with their thumbs as they wash your hair.  It used to feel great, now I dread it a little more. Interesting how my eyes dry out tremendously when the pain flares up.

"Oh Happy Day"

We had a slow start today but a great finish.

At the moment I'm writing this There are great thunderstorms all around us. The sky is golden yellow highlighting all the cumulus clouds. The sky is just glowing! and that's in the front yard. In the back yard is the most giant double rainbow I have ever seen.  It is just amazing!   I was just going to get on and blog about my second 3 D movie I went to this afternoon. It was good.  I think that's going to be my new 'hobby' going to see any 3D movie I can get my eyes on.
For most of the movie I was concerned that things were not coming out at me as they had when I saw Alice in Wonderland.  I did a lot of little eye experiments, you know, tilting my head this way and that, Closing one eye than the other, taking my glasses on and off.  I don't know that I learned much about my eyes except for at the end of the movie the credits proved I really could see 3D.  There was no mistaking it.  I always say I don't care about the story, I just want to see the 3D. But in this case the story was really cute.  I would recommend anyone grabbing the nearest 6 yr old and taking them to see Despicable Me.  What a cute story, and funny.  Oh, and no Pain.  


7/11/10 - Just thougt of something. Just to clarify, the double rainbow was real.  It wasn't cuz of strabismus.  HA HA

Ha Ha Ha

I got a laugh today at my boss' expense! We had our monthly one on one mtg with the boss today.  Tanya shows me my sales records and how I exceed my goals all the time.  So I showed her why I think that is.  I showed her going  back to eye surgery is when you can track this jump in my business. I went on a one minute explanation of how great my eyes are and how I walk around all the time so grateful for this gift.  I explained, I was really happy before surgery, I over came debilitating depression then the summer before surgery I lost all my weight I gained during that long period.  So I was happy as a lark, didn't need anything more, then I got this eye surgery.  So I really think that my sales have sored to new heights because I am so grateful and it rubs off on my clients.  Then she bursts into talking about some book, blah blah blah, and I asked her, I was confused, 'How did me talking about my eyes make you think about this book?'  And somehow she was thinking about her own eyes and how bad they are getting.  They are "fuzzy" and she's trying to not say in her head, her eyes 'are bad'.  She's trying to stay positive.  Anyway, Chalk one up for the grasshopper!  For once I have great eyes! Tanya and I both turn 37 this weekend.  I got 4 grey hairs, she gets glasses for her birthday.! Poor Tanya. HA!

I also got my hair colored today and my co worker was rinsing my hair and giving me a FIRM head massage.  I was scared when she dug right into where my nerve pain originates right by my ear.  It hurt but so far it didn't flare up.  I still feel it, but didn't want to tell her as what is done is done.  I actually didn't think of it till her thumb hit that spot.  Oh well, it'll be fine.

And then today...

After I wrote the last blog, I went into work to find a client on the books who hasn't been there for a while as she lives far away in Minnetonka. When she arrived she told me why she needed to come this day.  It was because she was anxious about her upcoming eye surgery and she just needed to see me as she knew I could relate.  That was possibly the sweetest thing she could have told me after what I just blogged earlier today.  See I'm not the only one that enjoys having someone to relate too. Hopefully some day she'll read this and add to this post in the comments section. She had her own eye miracles a few years back when a the Phillips Eye Institute helped heras she was legally blind and now you'd never know.

Can't sleep

I'm not the brightest bulb in the pack.  I washed my face before bed and noticed a milia  and not thinking I just took one of my needles ( esty's have these ya know) and stuck it into this milia, then tried another one. Got it out! Yeah! But I triggered the nerve.  So I'm laying there realizing I have to get up and distract myself from the pain.  Hopefully it will go away but if I lay there I just focus on it.  The moon was coming up and it's beautiful, and I don't see it in double so it gets me to  thinking about my little miracle eye surgery and came to a small conclusion that was kind of interesting to me.
The past few months I've had this frustration.  I think I may now  know what it is.  See I'm a bit tired of this blog, yet  I keep coming back to it and don't know why.  Well, laying there I was thinking how frustrating it is not to have anyone understand what it's like to have this big change.  This last eye surgery really caught me off guard. I am so amazed all the time and no one understands this good feeling.  Why do I need someone to understand?  I wish I was just a tad bit less grateful and  could actually take this for granted and forget about it.  Some people walk around negative and they can find the bad in anything. That is annoying. But walking around really grateful is kind of annoying too.  Only I can't share it with anyone.  Oh, I have tried. But you can see in their faces they just don't get it. Now with heart surgery there's a great big scar and you look really pathetic so people sympathize better. But with my eyes there's no visible scars.  How often though I remember what it was like before surgery.  I'm kinda mad at myself for not knowing that that was bad.  I didn't think it was that bad. Now I know how much better my vision is I don't know why I tolerated that for so long I could just kick myself for not going in earlier. Oh, well.
I think that's why I keep coming back to this dumb blog that no one reads but me,  I get to talk about what's in my head and I don't have to worry about if people understand or not. It helps me to understand.
When you have heart surgery or what ever, when you get with others who have had the same thing you click you understand you share your experiences.  I don't know of anyone who has had this experience.  I came close, with my workmates husband.  However, he is so embarrassed about his eye problem he doesn't want to speak about it to ANYONE!  What's up with that?  Why would you be embarrassed about your eye problems?  It's not your fault.  You didn't bring it on.  I don't get that.  I know there's social issues with strabismus etc. But really? You're embarrassed? Even with other people who have it?  The only person I can really connect with is Dr. C  I only see her only once every 6 wks for about 20 minutes while her hair is processing.  But she helps me a lot.  I don't have to explain myself to her. She gets it. She doesn't give me that look that says, "does not compute". I do feel guilty talking to her as I know if I was in her office I'd be paying for this consult. This last time I wasn't going to talk about my eyes at all, just went to say hello but then she immediately asks me about my face pain. I guess I was surprised she even remembered I had this pain. It caught me off guard.    I always ask her if she minds talking about this subject with me and she always reassures me she doesn't. She's very kind.
So that's what I think the frustration is about - I'm a talker and I can't talk about this.  Not even really with Jim. He's a good listener though. He tolerates me.  But I try to never tell him about the pain unless it's really bad as I don't want him to worry, and he would worry. It's like he wants to fix it but he can't so it just makes him irritated if I tell him something is wrong.  So I get to tell him the good parts but can't tell him the bad. Again,
that is why I have this silly blog.  I've said it all along, the blog is for me, so I have an outlet so I don't drive all my friends crazy talking about my little eye miracle countered with pain episodes. Can I say for the record again? It is a miracle.  I wish I could describe it.  I hope I don't loose it.
Alright I'm going back to bed to try to sleep, Lord knows I need my beauty rest. Just look at me! HA

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 :)