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.