Release

A lot has happened since last post
1. I took a medical leave from school--so I am no longer enrolled this quarter.  I can return next quarter.  But if I choose to take the next quarter off, I will be graduating with the class of 2016.
2. Retinal specialist said, "It will resolve in a month!  Don't worry about it and you can stop taking aspirin."
3. Neuro specialist said, "This is abnormal.  You need to get further testing ASAP because optic nerve should not be swollen for more than 2-3 months with CRVO."
4. So, my mom flew down and I got a lumbar puncture.  I also got more blood drawn. Number of vials total: 36 vials since June.
5. I now see 20/40 out of my left eye.  There is a lot more bleeding and more tortuous-ity with my veins.  Some bleeds have now reached the macula.  It's impossible to read this font size with left eye and street signs till I am about 10 feet away.

Everyone's hands are tied behind their back and right now my mom and I just lie on the bed...just waiting for result and follow up.

Lumbar puncture:
I couldn't sleep the night before.  The risk of paralysis was low, but I was still so scared due to it's invasive nature.  I hate it when they say "risk is low" because, honestly, risk of having a CRVO is low for someone my age too.  But I got it.  So "low risk" doesn't mean anything to me anymore.
I wasn't allowed to eat or drink 8 hours before the procedure.  I looked up online how other people's went.  I was surprised how some got it regularly.  They said they felt intense pressure on the back and afterward they felt pain.  There were youtube videos of the process, I didn't even dare to click on those.
Mom came with me to the procedure room, but I wanted her to stay in the waiting room.  I didn't want her to see because I knew she gets so involved emotionally and reads people so well.  So when she saw me wince when they put in the catheter into my vein for the second time with the nurses keep saying "I'm sorry, I know, I'm sorry", she almost threw up and fainted.  They had to give her orange juice and I kept asking the nurse if she was okay and if someone could stay with her till I was done (which ironically kind of made me laugh and feel better because it made me feel less focused on the lumbar puncture).
The doctor performing the LP on me came in and told me of all the risks involved and the purpose of the LP.  He said that he's never had a patient become paralyzed.  I signed the papers, then he left.
They injected sedatives in me.  I felt an instant effect and the room started spinning, but I somehow was able to fight it and stay conscious.  I continued asking normal questions and asked if my mom was doing alright. I felt calm, but not sleepy.
The nurse thought it was strange that I was so "normal," so at the procedure room...they injected more sedatives in me.  But I recalled everything.  The sponged me three times with the orange dye (that sterilizes my back...forgot what it's called..starts with a B.  I asked if I could hold the nurse's hand when the lidocaine went in (felt like a little prick), then she said she needed to put it down to monitor the xray.  I said okay, then immediately I heard, "Okay needle in...opening pressure 20....1....2...cup 3, please.  Done."  I didn't feel a thing.  AMAZING!
The actual lumbar puncture took about 10 minutes, and the prep took about 1 hour.  I had to lie in the bed for the next two hours with chicken noodle soup and assorted fruits as my lunch.  Until Sept 2, I need to stay rested and well hydrated.
I am thankful I did not become paralyzed, that I did not have headaches (not even a mild one), that my mom was near by.  I can't believe I considered doing this while I was in San Diego and just having my friend's sister drive me there and back.  No way.  I'm very thankful that my mom can cook, feed, and comfort me.

Vision is worsening rapidly and I am wondering if I should go back on aspirin.  I have noticed that my left carotid/venous area does feel sore pretty often.  I don't think I have an autoimmune disease.  I don't think I have a clot.  But I do think I may have something near my venous area on my neck (behind my jaw).  I think once that is solved, everything will return to normal.

I see my mom almost wasting away...she always asks me how I am doing and prays when she is not asking me questions.  I don't tell her of my vision decreasing and the more bleeding because I know it just worries her more and stresses her out.  I know she isn't the strongest when it comes to these things she cannot control...especially when she's just one on one with her daughter who's vision is just getting worse....BUT she's never had an epidural for both me and my sister.  I know she will pull through....Just hang on till Thursday, mom and dad (who is by himself :( and he hates eating alone)!

My friends have been extremely kind and wonderful to me.  Love you guys so much...

I try to draw everyday, but sometimes I don't even want to look at it.  I feel a lot of anger because I am going to be an eye doctor and I can't even treat myself.  I love everything vision related...just observing people's quiet/ordinary actions brings me joy.  I love design.  I love architecture.  I love drawing.  I love reading people's faces.  I love colors, lines--as cliched as it may be.  It's not fair....
It's not fair...I hope this will be over soon.

Back in the OC

For a while, I was happy.  I heard about all these personal stories from friends and peers around me that made me feel actually dumb that I was so down and anxious about my CRVO.  There was a co-worker who gave birth prematurely and the baby had every horrible thing happen to him (intestines bursting out, being in emergency intensive care over and over again, heart failures, infections, eating from a tube his whole life, and spending his important developmental stage in the hospital for years).  Furthermore, her husband was not supportive (which eventually dissolved the marriage during the time of tribulation).  Fortunately the child is now running around with his two feet and my co-worker is now extremely understanding of other people's sufferings and is a physically and mentally strong nurse.  She was telling me how she was lucky enough to get work off time to be with her child during hospitalization, but there were unfortunate circumstances for single moms who HAD to work to keep with their bills even though they wanted to be there for their child (some children had passed away while the mother was at work).  Upon hearing that, I kept my mouth shut for a while...

Within the past two weeks, I noticed my vision get worse.  Everyday, just something is slightly off.  I am so sensitive to visual disturbances because I believe that is my strongest sense--observation, catching details, 눈치, drawing...In the morning, it usually recovered within 10 minutes, but week by week it would take 10 minutes longer.  Colors were off and my peripheral vision would do this strange vibration, choppiness of images when I was walking/in motion--as though some parts of the images were being sent faster than the other.  Reminded me of this

I still see 20/20 out of both eyes, but contrast is terrible out of my left.

Now my optic nerve has swollen to about 400 um (my right one (normal) is about 130 um), half of my ganglion cells are gone, and there is visual field defect inferior nasally.  It makes me think...what is the point of having a healthy retina if my optic nerve, which relays the retinal information to my brain, is dead?

There is still one more test to be done (lumbar puncture) and I could probably take all the autoimmune tests in the world.  Intraocular pressure drops are not working for me right now due to my very low blood pressure (thus ruling out beta blockers, alpha agonists), swelling of optic nerve (swelling worses with prostaglandins), and aspirin (bad reaction with CAI).  There are possibilities of taking oral steroids (will get fat, hairy, hormonal, high sugar, and low calcium) or local steroid (can go blind from injection, further increase my already high-ish IOP, cataracts).

Seen a disease doctor, got more blood testing last week and had an appointment yesterday with ocular disease.  Both my doctors were stumped.  They kept saying how I don't fit the profile for CRVO: healthy and young.  I felt a huge lurch in my stomach when I finally got to see the panorama of my retina--disgustingly large amount of hemorrhaging out in the periphery.  No wonder I would see black spots out in the periphery while I was driving--I thought it was floaters or gradual syneresis of my vitreous, but they weren't swishing around.

One of the docs was telling me if I did go blind in that eye, I'd probably have a restricted ability to practice in optometry (GREAT!).  She said how exciting my case is and how rare it is (EXCITING TO YOU, MISERABLE FOR ME). She also was telling me a story of an amazing retino pigmentosa specialist doctor who ended up getting it himself and had to quit (COMFORTING!).  I know on the outside, I can give an impression of a tough resilient girl because of the things I say and carry myself, but I felt like I was being broken again.  I was trying to collect all the pieces and hold them together for the past few weeks, telling myself "mind over matter...mind over matter."

It sucks when you are in the profession and you know what the limitations and possibilities are.  It sucks when you understand your condition and there may be nothing they can do for it.  I want someone who knows more than me in this, I want someone who will take care of me and knows what to do...why did I have to be the rare case?  The feeling becomes so strange when your own parents are uncertain and ask you for answers.  I suppose this is the time to turn to God completely.  Trusting him and having this blind-like faith makes me feel...so naked, angry, nauseous, anxious--yet I am desperately holding onto hope.

I have a retinal appointment tomorrow and will be talking with Dr. Yacoub to see what we can do.  Perhaps waiting and being patient will work out, maybe it gets worse before it bets better...

For every trial and tribulation, there has always been a reason.  I can vouch for it, from all the past experiences I had and family had.  I can confidently say that, this experience has and will continue to make me a better doctor.  But I still naively fantasize about succeeding in a design career instead of going this route.

I feel like I am a black hole to my parents money pocket.  I just want to graduate on time and then start working, but....I also want to rest my body and mind.   Grr...I dont want to a hassle of moving up and down since my parents are getting older.

Sorry for dark post!