Usually I use this blog to release stress/rant...so many of my recent entries may have been negative.  However, the good news is, I have been healing from my CRVO :)

On November 9th, I had news from my favorite ophthalmologist in Irvine.  The floaters I see will be permanent because any injection in the vitreous will cause syneresis faster, thus the collagen clumping will be seen and not disappear.  As for the flashes, that will disappear.  She says, again, due to the syneresis the vitreous will tug on the retina, then stabilize.  Looking at the fundus, there are little hemes, distinct margins on my optic nerve, and no tortuosity--she said it nearly looks identical to the other eye.  How could this be?!  All the reitnal specialists said that the veins would be permanently dilated and tortuous due to history of CRVO; however, how am I to be completely cured from this?  I just wanted to see 20/20 and not have any visual field defects, but I was given the grace to be completely healed...

My mom never comes into the room with me when I see my doctors because I know she gets easily freaked out and panicked when there are terminologies she does not understand.  But this time I had her come in with me because I had a good feeling about it--I was seeing very well with no color defects.  She was very happy and kept saying thank you thank you thank you, thank God thank God thank God.  As soon as we left and got into the car, my mom started crying.  Strange how I wasn't crying, but my mom was.  She was behind the wheel and kept saying, "Let me cry, I am happy." I was about to cry, but I held it in because I think if I cried too, it would only make her cry harder.  I told called my dad and told him the good news.  I was and will always be thankful for their moral and financial support.

This whole experience made me rethink and realize how everything was so perfectly placed...How incredibly perfect God's plan is.  "He makes all things beautiful in His time."

I remember at the start of my second year of optometry school, I wanted to quit.  Everything seemed irrelevant--thus a waste of money, time, and youth.  I was about to apply to dental school, but I was given a mentee who was at least 10 years older than me and was a former dentist.  She quit her life as a dentist due to short shelf-life, and decided to become an eye doctor.  How in the world did this happen?  At that exact moment of my moments of deep doubts?

I am so thankful that God had my father change jobs from Korea to the California after my second year.  I remember my dad telling me how he was humbled by working at a job that was not as high of a position as his job in Korea--where he was respected everywhere and regarded very highly.  But I thank God that my dad came to California, back to our old home (!!) and had a humbling mindset.  What would I have done without my family in California during the past year?

During third year, I became more apathetic and unmotivated to learn beyond the basics of being an eye doctor.  I thought God had sent me to this profession because it would allow me to balance my hobbies, family life and job easily.  However, NOW I think he sent me here to be there for the patients, especially those with diseases, because I know what it feels like to fear loss of vision, have deep uncertainty and undergo multiple procedures.  This also triggered me to understand diseases at a deeper level and understand the high value of reading up-to-date studies and continuing education.

I have noticed change in my own heart as well...my work ethic has greatly changed.  I am more punctual, disciplined (staying the whole time instead of trying to dash out early), and accepting of difficult staff doctors instead of firing back (well, not really firing, but I used to think that I could control all situations and deny certain staff doctors.  Now I am trying to see it as something that will benefit me and not think that I am constantly a victim).

I FEEL what it means to be a doctor.  Before I generically "knew," but now I think I've figured it out.  I don't want to confidently and loudly say it because it's almost like a precious whisper...
It's not just something to make a living off of and maintain a balanced life.  It is what Jesus has been doing all his life.  It is the tiniest microscopic glimmer of His reflection--this immense opportunity to instill hope through the talent of physical healing.  It's like DUH what took you so long?  It's because I was so immature and foolish.  I just wanted to be comfortable in the future and go along my own plans.

I do wonder what my attitude would be like if I were not healed.  Would I still be thinking that God's plan is perfect?  I know I would think it was still His plan.  I would not quickly consider it as perfection in my own eyes.  I am confident that my human faith would be struggling deeply and consider God's plan as cruel.   I know...it is exponentially easier to say this because I am better now, but if anything were to happen in the future, I hope I can remember that Jesus does test--to train, to build trust, or else we default in trusting ourselves.  I hope that when I feel like I do not have enough like "If only I could have better health...", I should still offer ALL that is remaining to God despite anger, sadness, and bitterness.  He was able to feed 12,000 people with all that a boy had to offer: 5 loaves and 2 fishes.  It takes faith, but he can and will still do work with you, and perform great things through your offering.  "My God meets your needs." Philippians 4.

There are so many things I am grateful for.  Even when I feel like I am lacking things, I always try to remind myself how I am thankful that I did not have to wait an entire year to be healed. I am thankful for being in the optometry field.  I am thankful that I could go back to work and graduate with my friends I have been with for the past 3.5 years.  I am thankful that my own optometrist discovered my CRVO and referred me promptly to the appropriate doctors--it reaffirmed the importance of optometrists and knowing resources.  I am thankful for my professors who have been checking up on me and trying to help me by finding out a diagnosis/treatment.  I am thankful for my friends who have been offering to drive me to appointments, sharing their own stories of dealing with their health that hardly anyone knows about, and just asking me how I am doing, that they are thinking of me.  I am thankful for Caleb who stood by me and listened to me so calmly whenever I was terribly down, which was very very often.  I am thankful that I am not only healing, but healing to a point where it seems like nothing happened.  I am thankful for my family and the financial blessings, for I know it can be taken away as easily it is given.   I am thankful for God's perfect plan.

Update

- still hemorrhages (slightly less than the beginning), ON edema (slightly less in some areas, slightly more in others), and tortuosity (i'll always have tortuous vein though for the rest of my life).
- i used to see floaters superiorly, but now have been seeing them centrally as well.  they look like circular donuts.  i am assuming they are RBCs
- i notice flashes every once in a while and a large floater inferiorly.  i had it checked out but the resident found nothing.
- i notice my enlarged blind spot.  i still see 20/20 and the blind spot is not annoying.  but i do notice it--right eye sees clarity to a large range, whereas left eye sees clarity in a smaller range.

my stomach has been hurting for the past few months.  i am thinking it is due to the aspirin that i took everyday during the summer--sometimes right before i sleep because i forgot to take it earlier.  it feels like something is piercing, sometimes i feel nausea and sometimes i want to throw up.  it hurts most in the morning, but lately it's been hurting at random times of the day.  i upped my dosage of zantac to twice a day.  i think my skin as been at its worst i've ever had.

i feel as though i will get better, but it's stressful thinking about all the doctors appointments i have to go to and make up days i have to do, as well as fitting board's studying.  i do want to finish everything before i graduate, but everything is up to God.

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. John 14:27

God can bring peace to your past, purpose to your present, and hope in your future.

Home

It's good to be home.

Gonna be semi-quick:

TUESDAY
- I felt nauseous, dizzy, and headachey.  I was afraid that I had a CSF leak.  It felt better when I lied down.  It may have been because of air conditioning in the house.

WEDNESDAY
- I felt cold and dizzy at the retinal appointment.  I was given a blanket and some water.  It was terrible.  The retinal specialist talked with my lumbar puncture doc and they said if it continued till Friday to go to ER and get a blood patch.  Uhhhhh...okay.
-  I found out I had a macular cyst (I had no cyst on Saturday, but Wednesday it grew that quickly)--hence my 20/50 vision.
- Options:
       1. get treated with anti-VEGF today (ugh...I really REALLY didn't want to get a shot in the eye)
       2. go find a retinal specialist when I go back home (planned to go back on Thursday).  This was annoying.  I didn't want to stay in SoCal any longer...my mom was pretty much shriveled up and my dad wasn't eating good food (he cooked ramen and got a tummyache for two days lol).  But I was afraid that if I were to get a possible infection after my injection and I moved up the next day...wtf would I do?
- Anyway, I thought, "F*** IT.  Let's do it today and move home tomorrow.  If I go blind...then I go blind."
- The retinal doc looked like she was in her early 30s, but in fact she was mid 40s and she seemed so happy and smiley.  She was like "You have CRVO!"  with a huge smile.  I wanted to run away, but later on she was pretty cool.  She's amazing at injections and confident.  She said she would never do high school again because it was so difficult.  She said medical school was the easiest.  "After I took my first med exam, I thought, 'I can do this!  So easy!'"  And then she became a ballin' ophthlamologist.  Life is a bit easier for smarter people.
- Did another FA: still non-ischemic (thank God) and no delay (thank God).  But the ends of blood vessels are starting to become ischemic.  She was the best FA inserter.  No pain.  I didn't even care anymore.  I did a lumbar puncture, MRI with contrast, 40 vials of blood...whatever.  If I get the central vein to properly flow again, it should be good.  But how?  I'm thinking exercise.
- Injection didn't hurt much.  I felt eye tighten with increased pressure.  But it was alright.  The Lucentis was $2000.  Medical bills are racking up quick.  The CRVO support group made it sound like a bigger deal than it actually is.  Perhaps it's because I had a really good clinician.
- Apparently Lucentis can help with decreasing permeability of the vessels.  I was thinking, 'What the hell.  Why didn't we do this before?  My optic nerve could have been in much better condition.'  We'll have to wait and see how it affects my optic nerve.  It swelling does not go down...I may become blind in that eye forever.
- I told my mom to stay outside and not see anything, but she wanted updates.  The other young ophthalmologist (coincidentally Korean) I was with, I asked him if he could talk to my mom with ONLY optimism (If there was something bad, make sure there was a treatment available...otherwise don't even mention it).  He did a good job with it.  My mom's face went from whitish gray to some color.  He gave me his personal number to contact him if I had any questions.  I was thankful for that because sometimes I need answers fast.
- I left the next day, I didn't care much about waiting three days to see if I develop endophthalmitis.  I wanted my mom home and my dad to regain his energy.
- My mom packed all my luggage (I'm not allowed to lift heavy things still) and drove 6 hours all by herself.  She didn't even eat...she just wanted to get home haha.  She is a strong woman.  I hate it when people say "House wives are weak, they just waste their lives."  SCREW YOU.  My mom is a strong lady, a selfless mom, and a beautiful friend.
-At night while lying in bed, I heard my mom crying to my dad.  She was saying how sorry she felt for me that I worked, heard news about my eyes and possible diseases I might have, and drove many miles to multiple examination and tests all by myself over this summer.  She said she never wanted me to do that ever again.  But honestly...I thought I was supposed to do it--I was 25/26 years old.  I'm an adult.  I must admit, though, if it weren't for the kindness and generosity of David's mom, the support of my friends, and understanding of my staff doctor (to take time off whenever for appointments) I don't think I would have done it all of that myself--especially when I am so scared of needles and get anxiety about sickness.  So I am thankful for the people in my life for giving me strength.

CONCLUSION:
- NO AUTOIMMUNE DISEASE (ANTIPHOSPHOLIPID SYNDROME, HA! MY AS$)
- NO CLOTTING DISORDER (TAKE THAT, YOU B!TCH)
- NO BACTERIAL/VIRAL INFECTION (IM HEALTHY, YOU MOTHERFATHER)
- NO PSEUDOTUMOR CEREBREI (well...I was pretty sure I didn't have this, so..)
- NO CAUSE: IDIOPATHIC (good, but sucks because then it could be treated if there was a reason...)
- If I were to have a baby, I'd need a C-section so that I don't get another CRVO...woohoo for pulling out and stuffing intestines in my belly like a sleeping bag!!!!

Currently:
- My head hurts a little less, but I do get hit with nausea.  Hopefully I don't have CSF leak.  Maybe stress. Feels like tension headache because it's the back of my head.
- My stomach/GI system feels very swollen.  I don't eat much because I get full quickly.  I am on zantac because my doctor thinks the long period of taking Adult Aspirin (325 mg) may have destroyed some of my GI lining.
- The blurriness is gone! But a piece of my vision is missing central temporally (more central though).  It's like a C-shaped piece missing next to my fovea.  I am hoping it's just blood or CWS that will be reabsorbed soon.  But need to see a retinal doctor today.
- Contrast sucks and saturation is different from right eye.
- I will start looking for part time job, perhaps at my optometrist's office.
- I will continue drawing and praying....I don't want to give up hope even though I am so thin on it.
- I will not give up.  I will not give up.  I will not give up.

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!

Update

Bah...
I turned 26 this past Monday and no longer am covered for insurance, but they terminated me on June 30th. I've called many insurances, they all tell me I have to wait till October, November because of the Obama Care Laws.  What the hell do they want me to do????  Timing is impeccable, huh?

What sucked was that my vision suddenly blacked out on Sunday.  Went into urgent care and was seen by neuro specialist OMD.  Vision came back about three hours later.  She said my optic nerve was swollen nasally, and mildly swollen temporally.  She referred me to a retinal specialist.

Tuesday my OCT showed that my ONH was swelling more than ever and my macula was swelling more, as well.

I saw retinal specialist on Thursday.  Did an FA which hurt so much because the dye started leaking out under my skin next to my veins--it burned like hell.

All in all, my retina is not improving.  There are pre-cursors to neovascularization: vascular loops.  The ironic thing is that its more out on the periphery than macula.  Dr. Yacoub thinks its more indicative of antiphospholipid syndrome or possibly Eales.  Thank God for Dr. Yacoub who is crazy intelligent and helpful.  My retinal doc was basically "Yeah nothing you can do about it."  The ret doc essentially told me that its rare for young people to have CRVO, it's also rare for non-ischemic CRVO to become ischemic...and I was very very unlucky.  He made it sound like I was going to go blind in my left eye.  Immediately I was thinking about how driving would be complicated, how I would have to wear glasses for the rest of my life to protect my good eye, who could love a one eyed girl (ugh wouldn't it be even more terrible if she can't have kids??), and why in the world did it have to happen to me?  What did I do to deserve this?

I was trying to suppress myself from crying but just seeing the needle and the large amount of dye that would go into my system, tears just came gushing down.  I kept telling them I was sorry and wiped my eyes, but it just came pouring down.  I tried to articulate, "I'm too young to lose an eye.  I feel so bad for my parents...their future depends on me..." but I'm sure it came out like a bunch of gargle and spit.  As soon as the tears stopped, the doc popped my vein, but like before, not much dye could get in and actually started leaking outside my vein.  Burning pain, but I had to keep my face stuck into the photo machine or else the whole procedure would all go in vain.

FA showed that my arteries and vein fill up punctually like a normal person, yet I have ischemic changes peripherally.  He ruled out a clot, but I am doubtful because I think my aspirin had to do something with it--thinned my blood that it was easier to fill up.  The ret doc then said, "I'm surprised it filled up.  There is a chance it can get better."

Gosh how many times can my world flip in one week?

Even though there is complete filling of my AV, it is a mystery that I am not getting better if 1. I don't have a clot and 2. There is circulation.  So I am going to set up another appointment with a PCP and rheumatologist.  Definitely want another blood draw...even though I still have not gotten used to the past eight needle poking experiences haha...

I really want to find out why this happened... I want there to be a cause.  But I don't know if I am mentally prepared to hear that I have a disease that can cause miscarriages.  I'm not sure how much strength I have.

I think a lot about other things like....perhaps I could have taken the easy path of marrying someone rich and not stress as much.  Perhaps school work and stress prevented me from having an optimal body condition and caused all these issues....Perhaps I should have traveled more or pursued art...before my vision goes down hill...Why am I torturing myself to become an optometrist?

Its all very hard for me to take in and to think about the possibility of not bearing children...going through miscarriages...I don't know.  I try to keep things in perspective, but it makes me more frustrated.  Do I not have the rights to be angry and upset because I still see 20/20?  I am upset, frustrated...I don't feel young.  I feel bitter, old, and emotionally spent.  How do I get out of this nightmare?

Should I do bad news first or good news?

I think I prefer good news first.

Good news:
1. My optometrist and neuro-ophthalmologist thinks the optic nerve swelling is slowly decreasing, especially on the temporal side.
2.  Not worsening.  Hemes, tortuous veins, and CWS still there.  Takes couple of months to heal.

Bad news:
1. Doctor called me today and is considering having a lumbar puncture done on me.  I really don't think I could do this one myself...
2. I need to get a new insurance.  It expired two days ago.  I wish I weren't turning 26.
3. My beta-2 proteins and LCA is low, possible chance I have anti-phospholipid syndrome.  If that is the case, very complicated pregnancies and lots of miscarriages, higher chances of stroke...etc.etc. My worst nightmare come true.  But my cardiolipin IgG and IgC are normal.
4. My night vision in my left eye is horrible.  I can't see a thing when I'm walking through my closet without light on.
5. Temporal peripheral vision is starting to be irregular.  Whenever I look at bathroom tiles or something with straight lines, they pinch in at the top corner of my vision.  Luckily I don't have it in the center of my vision. Possibly due to the macular thickening and ON swelling on that side.
6. ON starts to have pallor after a month of swelling.  God knows how long I've had the swelling and it's been over a month.  Hang in there my glial cells!

I am praying that I don't have anything going on, that it was just a fluke and everything will be back to normal.  There are many things I don't understand.  I try to go running, keep myself busy by studying or talking to friends, and have a positive attitude, but I feel like I get broken down.  I try to keep perspective like I'm not blind, I live in a beautiful place right now, I am still alive and kicking...but just hearing about possible diseases I may have, especially possibly having miscarriages when all I've dreamed about is family, makes me really really really really really really....upset.

I ask my pastors to pray for my eye, but it kills me when they say, "If it is your will, Lord, that it does not get better, I pray that she may continue to keep faith and love you."

But..."Ask and you shall receive."  I always ask every night, every moment in the car that the Lord will heal me completely--if not, I beg. Sometimes it's hard to talk to my friends and family because I'm so pre-occupied with my condition.  Sometimes I just want affirmation that I am thought about or that I am in someone's prayers, as selfish as it may sound.  I wish everything and everyone stopped.  But things go on so easily without me.

I had a patient today who had an NAION and she has a black line right in the middle of her vision.  She experienced it because her mother had a terminal illness and passed away.  She told me she swears its because of stress--not any other health condition.  She looked at me and said, "Just continue to exercise and not stress.  You are so young."

I try to tell myself whenever I cry or feel down, "You either make it your excuse or story."  And I hate excuses.

Patients

Optometry can become routine.  I enjoy difficult cases such as diplopia, diseases, and fidgety children, although it can be stressful at times.  I especially love talking to my patients.  Initially it was really tiring...talking to 20 different people everyday and becoming emotionally connected to them.  I learned to be a little less attached, yet address their main issue and empathize with their personal struggles.

Few of the patients I encountered:
1. Shortly after the CRVO and multiple testing episodes, I had a 60ish-year-old patient who was distant and gave terse answers at the beginning of the exam.  After she was told that she may need an LPI to prevent angle closure glaucoma, she wasn't too sure if she was going to do it. She said she wasn't sure of how many days she has left--she was diagnosed with metastasizing breast cancer less than a week ago.  "Going to spend time with my grandkids now," and she just went about her normal routine. I was on a rollercoaster of emotions that week.
2. Genius elementary school brothers who wore thick glasses and read thick books about all sorts of subjects like archaeology since the age of 5.  They got bored easily and outsmarted all the loopholes doctors tell children to get them to comply, so we had to work and think quickly.  Though they were keen to what was going on, they were scared shitless when it came to drops.  The older one cried so much with his gangly legs kicking the chair.  He was in agony and shriveled up in the middle of the chair because the drops were "so painful"....He said he would rather eat potatoes for the rest of his life or something than get another drop in his eyes.  It was a spectacle to see haha.
3.  I had a three year old girl who kept showering her parents with kisses while they were talking to my staff doctor.  She climbed up her father's lap, grabbed his face downward with her small hands, kissed his cheeks once, and stayed there with her arms around his neck for a bit.  Then climbed on her mother's lap, brought her mother's face down, softly kissed her cheek, too, and clung into her for about an equal time.  Then went back to her father, repeat.  It was as though she wanted to make sure they got equal treatment of love hahah it was so adorable.
4. Another 70-something-year-old patient would not give me answers.  I would ask, "One or two?"  He would either not respond or say "Yeah."  It made me pretty frustrated because I thought he was upset at me for no reason, so I told him, "It'll be difficult to achieve the best prescription for you if there are no answers."
"Yeah."
"Okay, is one or two more readable and clear?"
"Yeah."
I learned that he had been recently diagnosed dementia when his wife came in after her own exam.
5. If you're going to get married, then really mean the vows you take at the alter.  Marriage may not be everything, because I understand that things can change...but the unconditional and undying support patients and their spouses have for each other in the exam room brings me so much hope.
  - I had a late 80 year old patient who had multiple sclerosis and was wheelchair-bound.  She came in with her 90 year old husband.  He was a retired physician, still strong and healthy enough to carry her in and out of the chair.  WOW
  - I've had a 70-ish year old patient who had Parkinsons and his wife spoke so lovingly and gently to him, and walk out linking arms.
  - I have also been with patients who had gone through traumatic marriages and are still finding strength.
6. If you are not going to get married, then that's cool too!  There was a sprightly lady who was engaged three times and never married.  She said it was the best decision she made in her life.
7. Patients who look like celebrities...and things.  I saw a Hayden Panettiere (even my staff doctor said so!) and another who...looked like a classic garden gnome...........like..he must have been the model for the first garden gnome sculpture....okay I will stop.


Reflection:
1. I am so thankful for my family's good health
2. There are a lot of twins in this world.
3. I love the two nurses who work with me.  One is a middle-aged Iranian and the things she tells me cracks me up.  We also philosophize life during break time or in between patients.  I've always had close Iranian friends, so it doesn't surprise me hehe.
4. I learned that many of my patients, both men and women, have depression and anxiety, and are on medication for that.  I do think it's because this world expects us to be superhuman and have perfect lives.
5. The women in the best conditions were housewives.
6. Sounds cliche, but definite generation gap.  I see the elderly come in with their library hard cover books and the youngins playing with parents phone/ipad.
7. I really love working with the kids.  They make my day so much better--its just the way they think and the things they say.  It's so pure and the world seems brighter, clearer, warmer....

Update

Sounds stupid but I joined a support group with pts who have had CRVO.  Many of them were surprisingly young with perfectly normal health (negative test results).  I read a lot of the posts and was kind of depressed.  None of them resolved and were talking about getting their usual anti-VEGF injections...

10% non-ischemic CRVO resolves
15% non-ischemic CRVO become ischemic

I really want to have a good cry but am so afraid that it will swell up my veins and make things worse.  I'm pretty sure the dull ache I am feeling is the swelling of my veins.  I know my VF is decreased because it's so bothersome I can't see as clearly and brightly as my right eye.

I know I'm not dying but I feel like doing absolutely nothing.  Sulking is bad, but it really sucks especially when you are in the profession and you KNOW that all you can do is wait.  You KNOW there is no treatment and nothing that can be done.  You KNOW all the mechanisms and you can't help it at all.  What good is knowing all this?

Waiting is trying my character.  All I can do is turn to God and pray that it won't get worse.

Thursday June 12 / Friday June 13: Carotid ultrasound, X-ray, Echocardiogram

- So far, blood-works from yesterday are normal, although I, myself, am suspicious of my d-dimer result.  I read online that normal is 254, but mine was 340.  The doc considered it normal though...
- ANA: NEGATIVE. TAKE THAT!
- I am beginning to notice a slight desaturation of reddish hues and my left eye is starting to have dull pains.  I dunno if it's because I am more aware of the condition I have that I am imagining it, or it's actually how I feel.
- I think I'm going to start exercising more.  Going to try swimming at the pool every night for 20 minutes.
- Carotid ultrasound was clean.  The tech was horrible though.  Pressed really hard on my neck with no warning or education.
- X-ray came out clean.
- Echo cardio-gram is to be determined.  Tech was nicer though.  She pretty much pressed really hard on my left boob.  It was a procedure of confusing emotions because sometimes she would be rubbing on my ribs which would make me laugh uncontrollably, and then other times it was boob-sandwhich time which made me want to cry.

UPDATE:
echo cardiogram: everything looks healthy and good.

Wednesday June 12: Retinal specialist, Physician, and more blood work

Retinal Specialist:
- My friend and classmate who is also out in San Diego for rotations came out to see me and my eye.
- The tech was amazing and kind.  He made me feel very comfortable.  Honestly, I came in an excellent mood and felt as though everything would pass.  That perhaps what happened to me was completely idiopathic.
- I still see 20/20, no APD (though mild anisocoria) and pressures are normal 20 mmHg
- We do an OCT of ONH and macula.  Slight superior macular thickening (no signs of edema though) and extremely swollen ONH (totally out of the normal limits, which is strange because my optometrist and neuro-ophthalmologist said my ONH was somewhat swollen...does that mean it's worsening?).  Right eye is happy as a cow.
- OMD comes in and flips my world upside down.  He makes me super scared.  He says that I should take this matter very seriously because it can be life threatening (possible clotting or autoimmune disease), it can go to the other eye, and I can go blind from this.  He says if it does not resolve, I can get neovascularization, will be needing regular VEG-F, and will be needing to see him every month for the first six months.  My head feels prickly and faint.  He asks, "Did I scare you?" F*** YEAH.
- What's horrible is that the other day, my neuro-ophthalmologist said not to worry too much about Lupus because it was unlikely, but this dude is saying "Oh yeah, you are very close to it, I would be very suspicious of it."  He also confirmed that my eye can stroke out by being on an airplane.  Lots of thoughts and images zoom past me: driving would be restricted, I don't know what kind of optometrist I'd be (or worse, if I stroke out both my eyes what the hell would I do with my life, I'd plead for a education refund lol, but seriously), quality of life would SUCK...getting injected every once in a while, medical bills...ugh.  If I did have clotting disorder or autoimmune disease, would I be able to have kids?  But strangely, it didn't make me hate God.  I was just curious to know why this was happening, since everything that occurred previously in my life happened for a reason and I witnessed and experienced it.
- I call my dad and I feel tears swell up.  I tell him everything because my dad is so good at keeping calm and dealing with hard news.  So thankful he is my dad.  He asks me, "Do you want to tell mom?  Or should I?"  Definitely dad. I tell him that it's not fair because I haven't even Europe--and the thought that I finally get to see Europe with my very eyes and stroking out on the airplane horrifies me.  God, where are my priorities haha...
-  Fluorescein Angiography: God what a B!!!TCH.  This hurt a lot even with the "baby needle."  Apparently not too much dye was able to get into my system because I "flexed my arm."  But photos were taken anyway.  This was the first time seeing my left eye. When staff doctors tell you, "You will KNOW when you see someone has a pathological disorder"--you KNOW.   Man, it made my stomach sour and in a twist to see how disgustingly engorged my veins were.  It was utterly disgusting.  Usually it's a 2/3 ratio of artery to vein, but my left eye was a gross 1:6 or even 1:7.  Hemes and CWS along the veins and my ONH was not distinct at all.  I had no reaction to the sodium fluorescein, but my pee was a brilliant yellow green--like some kind of hazardous chemical you see in cartoons.
- Good news:
  --> there is perfusion, thus non-ischemic CRVO
- Bad news:
   -->  prognosis is unknown.  the retinal doc will need to monitor every month for the next six months to make sure I don't get neovascularization or worse, neovascular glaucoma.
   --> still dont know the cause, more lab tests need to be worked, EKG, and ultra sound of carotids to be done.

Physician:
- AMAZING AND KIND.  He made me feel much better about myself.  He said it was likely to be idiopathic since no signs of thrombosis or clotting factors or autoimmune disease is seen.  I told him itty bitty details of symptoms that turned out to be normal and fine.  He said mono had NOTHING to do with this and that at least 80% of adults have mono.  That I am young and healthy, he doubts anything bad is the cause and that I just happened to be unlucky to have it.  But he thinks it will resolve.  He orders more blood tests: thyroid, createnine test, TB (the gold standard to see if I actually do have it or not, all my results have been borderline positive.  dammit, I hate the word borderline).

Phelbotomist: 
- Different phlebotomist this time.  I requested if she could just keep talking to me to distract me and she did a pretty good job, but nothing too memorable except that she lived in an area where a gunman shot three people a few days ago....
- This time ELEVEN VIALS.  God, both my veins were already pretty bruised and so she had to use a butterfly to get it in.  This one felt like it was taking forever.  I felt my left hand tingle, but I kept squeezing the stress ball with my life.  It's not the pain that gets me, but the concept of blood being taken out of me that makes me feel faint.
- This time they had juice!  I chose apple juice and went to dinner with my friends to forget all that had happened.  I realized we are talking like adults now....talk about work and money.

- Today I was very thankful for my friend Lawrence.  He was calm and composed the whole time, which helped me stay calm.  For the past week, I had desperately wished my parents were nearby, so it was comforting to have him.  Thank you, Law.  I felt like I was on an emotional rollercoaster, especially today.
- At night I kneeled and prayed to God to please heal my eye and my body.  I would do anything for Him to just make sure they went back to normal.  I repeated it at least 100 times before bed...

Monday June 9: MRI with and without contrast

- I check into my MRI site early in the morning and I see an 80ish-year-old lady with a patch over one eye being wheel-chaired outside.  The nurse and old lady are taking a break and looking at the trees outside.  I immediately panic and think, "Will I become like her?  I am too young for enucleation!"
- At the MRI place, the people at SHARP are super friendly and nice.  They give me some paper work to fill out and they go over what will be happening.
- I am lead by a very pregnant technician (are pregnant ladies allowed to be working with MRI's?) and told to change into a gown.
- I am given a warm blanket (as though it just came out of the dryer), head phones with a choice of what station I want to listen to on Pandora, and a pillow to lift my knees in a more comfortable position.  A portable button is placed in my hand to squeeze if I ever panic.  I can hear the pregnant lady's voice through my headphones, "Okay, Sandra, we're going to start!"
- I lay down and the machine squeezes my head in place so that I won't move.  My heart is beating fast.
- They place me half way into the machine to take a scan of my orbit and I squeeze my eyes shut.  Trying to hold still so the process gets done quickly.
- I feel like I am in a washing machine of overalls.  I hear a lot of loud banging as I listen to "Rude by Magic!"  Not bad though.  Strangely feel calm...
- "Okay now for the contrast."  They use a catheter and inject galadium inside my veins.  They have to hold my right arm to make sure I don't fidget because I told them I wasn't too good with needles.  I'm digging my nails into my palms as she pushes the galadium into my veins. It didn't hurt much (thank God) and I don't feel any difference in sensation.
- Same thing done, except Pandora isn't working so the loud banging seems is louder than ever.  I keep praying, "Please, please let it be okay."
- I go back to work to see my own patients, which I very much enjoy.

- I get a phone call that my blood results are all normal thus far, except Lupus is just a hair below borderline.  I am told by my neuro-ophthalmologist not to worry, I am still considered normal.  I have a sigh relief, but I still need my ANA results which is 97% sensitive to Lupus diagnosis.
- I also get another phone call that MRI came out clean!  But my optometrist says, "It's better to have an autoimmune disease than a mass."  I don't know how I feel about that comment.

Friday June 6: Neuro-ophthalmologist and blood

Neuro-ophthalmologist
- I was given the wrong address--the OMD did not work at that office that day, and had to drive another 15 minutes.
- Out of all the other Sharp hospitals, this one is perhaps the least attractive one hahah
- Neuro-ophthalmologist is very kind, helpful, and calm.
- Advised to take 325 mg of advil and get some blood work done.
- While driving, I notice the circumvection current in my right eye.  Cool.

Blood work:
- I call in to get my blood drawn possibly today or tomorrow.  I get very woozy when I think about blood being taken out.  Should I mentally prepare myself or will I be suffering in anticipation?
- The lady who answers says, "Whoa girl, you have A LOT of tests that need to be done."
  Me: "Do you think you know how many vials they may take?"
  Lady: "Not sure, but it's a lot of vials."
  Me: "Aww man!!  What time are you guys closed?"
  Lady: "5, come anytime!"
- I drive on over to see if I'm brave enough to get my blood drawn--I want answers now, but I'm such a pansy.  I ask the girl at the front counter of the laboratory center, "Can you estimate how many vials will be filled if I choose to get blood drawn today?"
  Girl: *looks up my info* "Dang, I'd say ten."
  I shout: "TEN???" I cover my mouth.
  Girl's eyes are super big and looks right and left, then whispers: "Were you the person who called in earlier??"
  I whisper back: "Oh, yea...probably.  Aww, I don't know if I can do this.  I might faint."
  Girl sits up straight and says in normal volume, "You aint gonna faint on me and you can do this.  Your blood replenishes like that *snaps fingers* We have orange juice.  You can stay as long as you want afterward to make sure you are okay."
  Me: "....Let me go to the bathroom."
  Girl: "Will be callin' your name shortly!"
- My name is called and my vein is selected.  I pull my arm away immediately as she brings the needle closer to my arm.  Girl, who used to be called Lady and now will be called Phlebotomist: "Girl, you can't do that.  You will make me poke you and get myself poked--it's dangerous!  I'll be talking to you the whole time, now stay still."
- In it goes, feels like a pinch and I hear the vials get filled up.  But Phlebotomist is talkin to me and we converse.  I learn that she is one year older than me and is making money to go to PT school.  I also learn that her brother's son and sister's son are born a week apart.  She is kind and good at distracting me.
- Phlebotemist: "Done!  Nine vials!  That's not to bad!"
  I'm pretty sure I had a weak smile and ask if I can take a picture of my blood.
- There is no orange juice :(  I get two cups of water instead.
- I drive home dilated and happy-ish....

SL 25 yo Asian Female

CC:
Left eye has an "amaurosis fugax" sensation inferior nasally.
Began sometime in April.
Initially occurred suddenly and lasted more than 30 minutes, now about 30 seconds to 5 minutes.
Occurs spontaneously, more often when getting up from laying or sitting position.
(-) associated symptoms: (-) HA, pain, diplopia
**Pt notes at the time it first occurred,
    - Optos was taken immediately with no abnormalities to extent seen .
    - an intern performed fundus and found no spasming of BV or abnormalities to extent seen.
    - pt talked to faculty and was told it was likely ocular migraine, so no dilation was performed that day.

PmedHx:
+ N/A
+ mononucleosis (resolved in spring 2013)
+ low blood pressure: 94-110 / 70

FmedHx:
+ hypercholesteremia: father, grandfather on fathers side
+ stroke/aneurysm in uncle (father side) when he was 19 yo
+ migraines: father, mother, sister
(-) glaucoma, diabetes, HTN

VA: 20/20 OD, OS at distance and near
IOP: 20 OD, OS note: this is the norm
Pupils: PERRL (-) APD equal in size
EOM: Full and unrestricted (-) pain, diplopia noted

Visual Field - SITA standard C-30-2 
OD normal
Mild OS attitudinal defect.  Pt did not notice any part of vision missing, although left eye seems a bit "darker"

Amsler Grid
(-) defects OD, OS

Fundus and BIO
OD normal (-) holes, tears, retinal detachments
       C/D: 0.20 round, pink healthy rim, distinct margins
       Macula: (+) foveal reflex, flat
OS (-) holes, tears, retinal detachments
      + Swollen optic nerve (-) distinct margins, pallor C/D: ~0.20 cannot tell due to swelling
      + Cotton wool spots along arcades and nasal; none near macula
      + Flame hemorrhages along arcades and nasal; none near macula
      Macula: (+) foveal reflex, flat

note: doctor does not have OPTOS........

Optic Nerve Evaluation
Red cap test: (-) differences noted
D-15 saturated: normal
D-15 desaturated: 
- first attempt, desaturated red hues were mixed up
- second attempt normal

Differentials
1. N-AION (A-AION, although unlikely due to age and no note of pain, jaw claudication)
2. CRVO

Due to:
1. Clotting disorder
2. Vasculitis
3. Mass compression: clot, tumor, inflamed vessel...etc.
4. Autoimmune disorder


Ruled out: 
Glaucoma (side note: pt's pachymetry 600 um OD, OS)
Brain mass (-) bilateral VF loss, abnormalities in gait, speech, HA...etc.

Referrals/Orders made:
1. Neuro-opthalmologist
2. Retinal-ophthalmologist
3. MRI of orbit: with and without contrast
4. Blood tests: platelet count, CRP, ESR, various anti-body panels
5. Fluorescein Angiography
6. OCT to evaluate retinal thickness

Advised
- 325 mg aspirin PO qD
- patient not to go on airplanes in case eye strokes out due to change in pressure!!!