New Scary Medicine

My vision is still pretty blurry.  It's to the point where I'm pretty annoyed with how slowly it's coming back.  It's frustrating living in a hazy world.  I want to read books.  Heck, I want to be able to read my mail, or documents I print to make sure that they are correct.  Super thankful for technology, because if I couldn't work right now, I'd probably have gone crazy.  But it's still hard to feel like I'm not as productive as I could be, to feel limited.  I just want to feel normal.  I misjudged a curb yesterday and fell badly on Main Street.  Two of my coworkers saw it, so it was super embarrassing.  My leg is badly bruised, and I pulled something in my arm catching myself.  I'm ready not to do that again.

I'll be starting on methotrexate next week.  Methotrexate is a chemotherapy drug, an antibetabolite.  It works to suppress the immune system, by blocking an enzyme needed for cells to live.   Methotrexate originally got it's use in the 1950s as a treatment for leukemia and other cancers.  The American Uveitis Society indicates that "In patients treated with methotrexate, the medicine has been shown to preserve or improve vision, decrease signs and symptoms of inflammation, spare the use of corticosteroids, and allow the performance of surgical procedures, such as the removal of cataracts, to proceed safely."

Methotrexate is an injection that I'll give myself weekly.  I was able to pick it up from the pharmacy today, but I have to go on Tuesday to the doctor's office to be trained on how to inject it.  It has a ton of crazy side effects.  One important one is that you cannot get pregnant while taking it.  This is something I rarely talk about, but I will never have kids.  It was decided for me long ago in a doctor's office at Children's Hospital that the effort to put my body through a pregnancy was not worth it to me.  But it's different to have to think "ok, if by some random chance I did miraculously get pregnant, that would be the end of it."   It's weird to have three doctors remind you that you indeed cannot have a baby right now.

There's also pretty major concerns for your liver on this medicine.   You have to take folic acid with it in order to try to ward off some of the side effects.  Monthly bloodwork will be done to monitor everything.  Since it suppresses your immune system, there's always the important risk that it's so much easier to become sick with infections.  My entire life is lived in the public.  I live in a world of public meetings, events, public transportation....heck, I even live in a hotel.  Germs are all around me.  The risk of infections scares me.  The last drug I took that was similar to methotrexate was in 2011 and it made me horribly ill, with nausea and vomiting and fevers, as well as affected my pancreas.  But the risk of going blind is too severe to not try the meds.

Can you tell I've been doing research?  I'm so thankful for my chemistry/biology background (I was almost a chemistry teacher).  It helps to understand everything that is going on in my body.  I agonize over drug choices.  My doctors are often amazed at my knowledge and the amount of information I insist on before I'll take any medicines.  Heck, I don't even eat processed cheese...why would I be any less picky with a medicine?

Speaking of processed cheese....a cooking blog I follow does an "Unprocessed October" where you challenge yourself to eat only unprocessed foods for the month.  It's been interesting to read the posts, since most of my life these days is unprocessed foods.  I could do better, even as I write this I'm snacking on a Yoplait Whipped Chocolate Yogurt.  I may try to do an entire challenge and really commit to cutting out those few things left in my diet that are a little more processed.  Maybe make my own yogurt and breads (is flour too processed for an unprocessed challenge?) and switch to homemade peanut butter cups using my natural peanut butter.   It's getting to be the end of Farmer's Market season, so fruits and veggies will be more limited options-wise, which is when I tend to get a bit lazier about food.  I try really hard to eat in season, and I'm so thankful for my farmers who help make that possible!  And my diet is super reasonable already, I already make sure I try to buy the freshest, highest quality ingredients.  I cringe anytime anyone suggests I change anything in my diet when I tell them about my ulcerative colitis.  Because first off, it's not caused by food and second off, I already spend so much time and energy thinking about every thing I put into my mouth.

Anyways, I see the eye doctor again next week.  Hopefully by then, I'll be able to start tapering the eyedrops.  We're going to do it really slowly, to ensure that it doesn't come back, which is common in uveitis if tapered too fast.  I've started tapering the oral prednisone, going from 30 mg a day to 27.5 mg a day.  Slowest taper ever, but I'm too afraid to rush it.  Eight days of being legally blind and 21 days of vision loss will change your life a little.

I still have the Go Fund Me set up, if you are so inclined:  https://www.gofundme.com/cydtz2-angelas-medical-fund

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.

Two weeks as a visually impaired person

I went temporarily blind last week.  I've had uveitis since about 2009.  It's an autoimmune disease that involves inflammation of the iris of the eye.  It's considered an extra-intestinal symptom of Ulcerative Colitis.  You can read previous posts on this blog to learn more about my life with UC.   I've had numerous flares of uveitis over the years, but never this bad and never this sudden or severe.  I see my general eye doctor as well as a retina specialist regularly to monitor my eyes, typically every six months or so, and more often when in a flare.  I've seen additional specialists over the years, including at the Ross Eye Institute, and my eye problems were one of the reasons I began to consider going onto a biological medicine to suppress my autoimmune issues.  My eyes have been relatively well controlled over the years, thankfully.  Losing a colon is traumatic, sure, but losing my sight?  I never wanted to consider it.   During all of my uveitis flares, I  never had symptoms with uveitis that were so bad that I could not work.  Humira, the medicine I was on for 3 years is an ANTI-TNF medicine....so it treats the entire body systematically and is also approved for treatment of uveitis - so I didn't have any uveitis flareups while I was on Humira.  I saw my eye doctor just a month ago, after starting on the Entyvio, and my eyes looked good, clear, and healthy.  Uveitis is one of the leading causes of blindness in the United States, particularly within the working age population.  There is no cure.  Some people have one flare and then never have another flare.  For some people, it's a recurrent, chronic problem.

Uveitis makes your eyes extremely light sensitive and causes pain behind the eye that feels like your eye is being pushed out of socket.  I describe it as feeling like when Homer Simpson grabs Bart by the neck and squeezes his eyes out.  The inflammation also causes vision loss.  I woke up on Tuesday morning, September 26th with some pain and slight vision loss.  Those who have had vision tests probably understand that 20/20 vision is standard on what is referred to as the Snellen eye test.  My vision is about 20/80 without my glasses, my glasses correct it to 20/20 in one eye and 20/25 in the other. I woke up that Tuesday with vision reduced to about 20/60 while wearing my glasses.  I went to the eye doctor and was prescribed steroid eye drops four times a day and dilating drops twice a day, the standard treatment I've used in the past.  The steroid treats the inflammation and the dilating drops reduce the pain from the inflammation and  prevent the pupil from sticking due to the scar tissue from the inflammation. My vision got worse as time progressed. By Thursday, my vision had reduced further to about 20/400ish.  I could not see the big E on the eye chart.  I had no vision at all in my left eye- not even light and shadow.  Definitions-wise, legally blind vision in New York State is 20/200. My eye doctor changed my drops to every two hours including at night.  I also started on oral prednisone steroid.  By Sunday night, I could see lights and shadow and color in my left eye.  My vision continued to be within the moderate to severe visual impairment range.  On Thursday October 5th, my vision checked in at 20/125 at the eye doctors.  My doctor opted to use steroid injections to directly provide 50 doses worth of steroids to my eye.  This should help my vision clear more quickly.  The shots made my eyes feel puffy and swollen, like I'd been crying all day. The day after the shots, my eyes felt bruised and sore.  My eyes have slowly turned bloody and gross-looking since the shots, but it's a small price to pay to try to preserve my vision.  My vision is hovering around 20/80 to 20/60 with my glasses on right now, so it's getting slowly better each day.  It's just a waiting game to see if my vision does come back.  At least right now, we're within a range that is fixable by lenses.  We won't know if I suffered any permanent vision loss until all of the inflammation is gone down.  Here's a chart showing the differences between different vision values:

In the past year, I have dealt with a lot.  My standard Ulcerative Colitis, including fighting with doctors and with health insurance, trying to figure out what was wrong with me for so long.  Drug Induced Lupus that severely limited my mobility last winter.  Kidney issues that brought me to the Emergency Room.  Muscular issues in my back that brought me to my knees and led to months of physical therapy.  A friend who was like a brother to me died.  And now, blindness.  How much can a girl take?  

People often ask me how I stay so positive through all of these struggles.  Honestly, my secret is just to buck it up and deal with it.  It could always be worse.  I was raised by a father with the philosophy of "welcome to the real world, life's not fair."  When I was young, it was annoying to hear him say that, but as I grew, it became a comfortable statement to hear.  It's kind of a cop out kind of advice, but it's also the world's most applicable advice - just as fitting when you don't get to buy the barbie you want or when a boy doesn't like you or when you lose your job.  The world isn't fair.  We don't get to choose  the struggles that are thrown at in life.  But you never know what you can survive until it's thrown at you. All we can do is take the things that we can control and make the best out of it.  Why choose to dwell on sadness and bad things? 

My Grandpa Violanti used to refer to me as a fighter, always telling me that I was cut from a different fabric than my siblings. I still feel grateful every day that I don't have to deal with their issues.  And I fight, hard, every single day, because it's my nature - to fight, to survive, to thrive.  I am fiercely independent, to the point where it's probably a character flaw.  I hate relying on people, I hate feeling helpless.  Even in blindness, it felt awkward and overwhelming to get so many "how can I help" messages.  Don't get me wrong, I appreciated every message I received, and I have felt so much love and support.  I have read (well my phone read them to me) every text, tweet, facebook comment and I'm sorry I couldn't physically reply to them all.  But at the end of the day, the empowering part was to realize everything that I could do as a blind person. 

My first attempt at blind cooking

A lot of people offered to bring me dinner.  I didn't need you to bring me dinner, because it was an exciting challenge for me to make my own dinner.  I ordered groceries from Instacart last Sunday.  My first cooking effort -  my standard baked mac and cheese.  A recipe I've made a million times before, perfected over the last 20 years.  I made a roux sauce as a legally blind person, because I never halfass anything in my kitchen.  I scalded the milk badly and my pot has been soaking for days and is still kind of crusty, but I made it.  I accidentally didn't coat all the pasta in the cheese sauce so part of it wasn't as yummy as I would have liked.  But it was edible and I did it. 

On Tuesday, I walked to the Teddy Roosevelt site because I needed to pick something up. I could have called you for a ride, sure, but I needed to be able to do it myself. I walked there perfectly (learning that downtown sidewalks are MUCH smoother and better condition than Allentown sidewalks).  I then took the bus home, asking the bus driver to help me distinguish the singles from the fives in my wallet.  I attended a Transit Oriented Development meeting with many of my professional colleagues on Wednesday....it was awkward not recognizing a few people who spoke to me, but it all worked out in the end.

There's been a few saving graces I've realized this week.  First, the innate benefits of living in community.  We all have communities we live in - our friends groups, our work colleagues, our churches or schools, families, etc.  Here I mean physical geographic community.  Living in a hotel has been a godsend.  When I woke up and couldn't see, I was able to find my way to the front desk, hand the staff member my phone and have him call my doctor for me.  He then ordered me a lyft and sent me on my way.

Public Espresso Groupie

The staff at Public Espresso have kept me in good company (and coffee and baked goods), and helped me order groceries from Instacart.  My neighbors have helped me, providing a supportive ear, and my landlords have provided hugs and encouragement (and sarcastic jokes from Rocco...because of course). Having lived in the building for more than 5 years has been a huge help too.  Even when my vision was 20/400 in only one eye, I knew where the elevator was.  I knew how to feel the wall to the front desk.  I know how to work my light switches, my shower, my stove.  Having spent the last seven years living Downtown, the majority of which without a car,  I already know Downtown Buffalo intimately by foot.  I was able to walk to CVS to pick up my prescription as a legally blind person with no trouble. I know where all the cross streets are, I know where the bus stops are,  I know what buildings look like, I know where every garbage can is. Bonus points for car free downtown living.  I lived in my first apartment in Eggertsville also for five years...it was there I had my first uveitis flareup. If I went blind in that apartment, I would have been stuck...maybe I could have walked to Value or Rite Aid to ask one of their staff to help me use my phone?

Other things I've learned:

• Thank you to my high school typing teacher for teaching me touch typing all those years ago....I am able to type this without looking at the keys.
• Talkback and other accessibility options are a godsend.  Listening to my phone read your instagram captions is hysterical.  Technology is super cool and exciting, and I know there's even more technology out there for people with long term and permanent blindness.  But even just with the simple talkback feature installed on probably every cell phone, I have been able to communicate.  It's slow and sometimes glitchy, but I wouldn't have survived without it.
• A lot of websites are not designed well for blind accessibility.  I've never been so aware of font choices and color combinations.  The most frustrating is when half of the site is fine but then you'll be reading and halfway down the page the rest of the site is completely unreadable because of the way the site is formatted.  I'm sure webdesign types would know more about how to explain this or how to combat this, but it felt like it's a very obvious problem that people don't think about when designing sites.  I will really consider this particularly when I lay out maps, because I feel like now I'm much more intune with how things look with low visibility.  
• Audio captions for the blind on TV shows are hysterical.  It describes the actions that are happening when there's not dialogue so you can keep up with the plot.  It is the best when watching NCIS (Gibbs stares).
• It's been weird being home and watching/listening to tv.  As someone who is not really a tv person, it was nice for a few days, but I'm ready to get back to working and my regularly scheduled life.
• Phones also can describe audibly the photos you post on social media.  For example, it will say "photo may contain three people, smiling, outdoors, trees, nature" to try to describe the scene.  If people are tagged in it, it can tell you that too.  It's super interesting how visual our sharing of our lives is these days....I've posted a lot of snapchats and instagrams and I cannot wait until I can see clearly again to see just how blurry and odd the pictures I've been taking are. 
• The staff at the library were incredibly helpful in trying to help me find books on cd to listen to or download.  I asked for ten to fifteen different titles and they kept not having any of them.  But they were so patient and nice to me while I made them look them all up.  You know I love libraries already, but this just really felt good to feel like I wasn't a burden when I totally felt like I was.  One of my first thoughts when I couldn't see was my bookshelves full of all of my beautiful books and the fear that I'd never be able to see to read any of my books again.  That was one of the most depressing thoughts I had through this whole process.
• I feel like I've learned a lot about mobility and accessibility from an urban planning standpoint that I could probably write a whole paper on once I get my thoughts together.  As someone who already uses the bus and the subway, using the system with low vision is an entirely new experience.
• Stairs are the worst.  

In summary, thank you all for all for surrounding me in a bubble of love and support these past two weeks.  Hopefully we're heading out of the worst of it now and life will be back to normal soon.  I've really appreciated everyone who's reached out from near and far.  As I've said it's been hard to keep up with all of the comments and posts to physically reply to everyone.  I love you all!