Update Friday October 13, 2017

I lost my fitbit.  It's somewhere on the floor in my bedroom but it blends into the carpet really well or it's in the dark space under my dresser or bed.  I was on my hands and knees for ten minutes looking for it before I gave up.  Something that i would have taken completely for granted three weeks ago, when I would have just grabbed it and clipped it back on my pants and went on with my day.  

Visual impairment is a series of little events like that throughout the day.  It's been 18 days since I last saw clearly, 18 days full of moments.  It's moments when you realize you are eating expired meat because you couldn't read the expiration date and the Instacart girl bought you meat that expired.   It's when you realize that you have to stir things more than you think when you can't see them, otherwise you'll end up with the entire shake of red pepper flakes in one hamburger and the rest of the meat with zero red pepper flakes.   It's when you realize you've had your cardigan on inside out all day (actually, I've done that fully sighted as well, lol).  Or you realize there was a smudge of melted chocolate on your face all day. 

And stairs.  Stairs are the worst.  You really get to know how bad they are when you can't see the depth between two steps.  I trip.  A lot.

How my computer screen looks these days

My vision is around 20/50 right now with my glasses on.  Still pretty bad.  Legally, you're allowed to drive in New York State with 20/60 vision, so I could drive a car.  Not that it matters, since I don't have a car.  Still thankful for any improvement at all.  I'm back to work, doing the best I can each day.  Reading paper is hard, but I've set up my computer with some accessibility options so I can use it pretty well.  I made a map yesterday, which was an accomplishment!  

I've made a Go Fund Me account, as several people have asked me how they could contribute.  Please do not feel like you need to give....everyone's love and support and prayers has been more than enough these past few weeks!  And to those who have donated, I love you!  Here is the link if you are so inclined:https://www.gofundme.com/cydtz2-angelas-medical-fund  

I don't consider myself to be a vain person.  I've never really put too much stock in my appearance so while it's been strange these last few weeks to not to wear makeup, not to really style my hair, not to pluck my eyebrows, not to care, it's not really that odd for me.  I've kind of enjoyed letting myself feel a little sloppy these last few weeks.  But I also want to look nice.  

I went to the Rheumatologist today.  I've somehow lost 20 pounds since the last time I was weighed on August 18th.  It actually shocked me.  I've been on prednisone these last two weeks, and had an insatiable appetite, so I was anticipating having gained weight.  My body is so bizarre, it doesn't know what it's doing with itself.  I know I could stand to lose weight, but I haven't been working out or eating properly or doing anything that would encourage weight loss, so it's definitely a red flag that something is going on in my body right now.The rheumatologist wants to put me on methotrexate injections, which would treat my eyes as well as my arthritis.  The good news is that the lupus antibody markers are all gone, so it's likely that it was indeed a drug induced lupus.  The arthritis symptoms I've been having post injections seem to be just related to general IBD caused arthritis.  Isn't it lovely how disease in my bowel affects my whole body?  It's more than just a pooping disease!!  Alternately, I may have to go back on an Anti-TNF medicine, which could be scary since that's the drug class of Humira which gave me lupus.  So we'll basically be trying to find a medicine that is used to treat both IBD as well as uveitis and arthritis. Entyvio is likely not the right drug for me right now, or at least not Enytvio alone.

I see my Gastroenterologist on Tuesday morning to discuss more and try to figure out what to do.  I'll write more when we've figured things out.