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....

Country music

I really like country songs...they are more innocent and sweet - really tired of hearing about sex, alcohol and drugs on the radio.

Some think about when we will have our first Asian president, but I wonder who the first Asian country singer will be....Is that too bizzare?  Is it like having a black person on a K-pop group?  PERHAPS.

Here are some current and classic ones I enjoy!

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...