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