On to the Next One...

I had a colonoscopy on June 19th.  They put me through the ringer to get it scheduled - it took more than two months and a LOT of fighting with doctors, hospitals and insurance.   I'm literally exhausted over the way medical treatments are handled for sick patients in America.  It breaks my heart.  I'm so thankful that at least I'm well enough to work.  Sure, some days I really have to grin and bear it, and my job allows me to take all the bathroom breaks I need because I'm not tied to a sales floor or something.  I know that I'm a lucky one.  But it stinks.  I literally had a nightmare the other day that I was supposed to have an appointment with my old GI.  I had to go to the bathroom so I "missed my appointment" because I was down the hall and wasn't in the waiting room when they called me and the next available appointment wasn't until January.  I know that's a nightmare, but it's honestly not that far from the truth. My appointment to go over my results with my GI isn't until August 14th, two months after my colonoscopy.  Because our medical system is so broken.  As an existing, sick patient, I can't get in to see my doctor to get my results for two months after a procedure!  It's ridiculous.  It makes me very angry.

My primary care doctor was able to get me my colonoscopy results.  That's right....I can't get the results from the doctor who ordered the colonoscopy (and I've called her three times and emailed three times asking for them).  Obviously, my primary care doctor and her office can't give me specifics on the results, but I've had this rotten disease long enough to know what it means.  The gist is that my disease is still active throughout my entire colon.  Not a big surprise.  There is some pretty significant scar tissue in my colon too, from the constant inflammation for over a year.  I stopped the Humira in March of 2017, so I'm pretty much thinking the inflammation stems back from around then.

In the meantime, I also had to fight with my doctor's office to get on a new medicine.  The Entyvio clearly doesn't seem to be working after a year.  My next step is Simponi.  It's not as commonly used for bowel disease, but I'm at the point where I'm willing to try anything.  So it was another round of phone calls with doctors, insurance and specialty pharmacies to get it delivered.  She prescribed it on June 11th.  I finally got the medicine today.

Simponi costs $3,900 for the first month (three shots).  After the first month, you only take one shot, so it's 1/3 the cost.  That's after it's been run through insurance and all that jazz.  Our health care system is so broken.  Thank god for drug company assistance programs.  But they don't make sense to me, why doesn't the company just make the drug cost less?

I just really hope that this is the answer to get me out of this ulcerative colitis and uveitis hell I've been living in for the past year.  This is another Anti-TNF medicine, so there is still the possibility of lupus again.  I'm honestly terrified.  But I'm willing to treat the lupus if it means I won't go blind.  Living with a chronic illness is sometimes choosing the lesser of two evils.  Given my eyes or my colon, I'd get rid of my colon.  Given drug induced lupus or my eyes, I'd take lupus.

Wish me luck.

An Ode to Prednisone

Today was my first day off of oral prednisone since September.  Prednisone is a steroid that is often used to treat inflammatory disorders.  Typically, when I'm on a course of prednisone, it's for a week or two.  While four months is by no means the longest course of prednisone, it was long for me.  Prednisone is a great drug because it works quickly.  It also is a scary drug with bad side effects - muscle cramping, insomnia, etc.  One of the side effects is that it can affect your bones.  This is a huge concern for me, because I already have had osteopenia bone problems in the past. 

The biggest thing with being on the prednisone is that it can delay the healing of open wounds.  When I had my surgery, I was still on a pretty high dose, and had been taking it for about a month for my eyes.  When you're on prednisone, you can't just stop taking it, your body needs to slowly taper off of it.  This is because the prednisone can affect your adrenal glands, so you need to give them a chance to "catch up" as you taper.  Additionally, because we're still afraid of my eyes, I had to taper extra slowly, because the uveitis has a tendency to come back if you taper too quickly.  So I've been trying to get off of the prednisone since the day of my surgery, October 29th.  If I were a normal patient, I probably would of been able to get off of the prednisone in just two or three weeks...instead, it's taken me 10 weeks. 

The prednisone was treating my arthritis.  And I also haven't been able to take the methotrexate to treat my arthritis and my eyes while I'm healing, because that too can inhibit healing.  My left ankle has flared up bad.  It's swollen and puffy.  Walking on uneven packed down snow is incredibly hard.  My doctor had me start wearing an ankle brace.  Keep in mind that normal people can take over the counter pain killers, like Advil, but I can't.  It hasn't been fun.

The prednisone was also treating my ulcerative colitis.  We're not sure what's gonna happen now that I'm off of it.  Hopefully the Entyvio has kicked in, but we still don't know if it works, partly because it takes 4 to 6 months to know if it works, and partly because I've been sick since the first week I was on it.

I had my drains out just before Christmas, eight weeks after my surgery.  My wounds are about the size of quarters.  The last two weeks since they came out, I've had a lot of pain and discomfort.  I've spent the holidays in bed.  Not that it's different than the last few months...I've spent practically every moment that I'm not at work in bed. 

I'm still on steroid eyedrops.  I'll be on those for at least another few months.  Like I said, you have to taper very slowly or the uveitis could come back.  While my eyes have no active inflammation, my vision is still not where it should be and we still don't know that it will come back.  And I can't get a new glasses prescription until I'm off the drops for a while.  I'd like to say you get used to life being blurry, but honestly, you don't.

But even when this is all over.  I'll still have ulcerative colitis.  I'll still have uveitis.  I'll still have arthritis.  It doesn't go away.  I want it all to go away.  Years of being trapped in a body that hates itself has started to wear on me.  It sucks, because people really worry the first few weeks after something happens....after a little while, most stop checking in.  It's understandable, people get busy, people have their own lives. I'm super independent and I hate asking anyone for help, but man does that approach get super lonely sometimes.  It's hard to feel so alone, especially over the holidays.

But today, getting off the prednisone feels like a big step today.  I hope it was. 

Insurance, Quacks and Preparing for Followups

I got a bill for bloodwork last month.  The actual bloodwork was done in April.  It was the last test my former Gastroenterologist ordered for me.  The test was to see how much of the Humira was in my system and if I had developed antibodies to the Humira.  My insurance denied the test at first, saying I had to go to a different lab to have the bloodwork done.  My doctor's office told me to go there and said it'd be covered at the other place.  Anyways this is the test that came back, my doctor interpreted as I needed to go back on Humira despite it making me so sick with the drug-induced lupus.  So then, nearly five months later, I get a bill in the mail from the blood lab.  What they didn't explain to me is that insurance was only covering $21 of the cost...I'd have to pay $533 out of pocket.  This is why insurance companies are the real enemy.  I'm sorry, but you should have just denied the claim.  I would have been completely happy without having that blood test, since the results literally told me nothing that was useful medically.

This week, I successfully negotiated the cost down.  I'll be paying $133.  It took multiple calls to both my insurance company and to the lab.  It's exhausting.  And that's still not cheap.  And that $400 will be going to hospital bills.  It's disgusting.  Just another day for those with chronic illness.

Have you ever joined a facebook group about a disease or condition? It's a terrifying world (let's face it fb groups are all kind of terrifying places at times). It amazes me the misinformation that exists out there on the internet.  People sharing their horror stories.  Sure, I know most people don't join a message board or group to say "hey, I had this issue one time and everything healed up fine, and I never had any problems again".  But it's scary the information out there and how wrong some of it can be and how traumatic it is to ask a question and have people immediately share their horror story. Someone told me that my abscess will 100% turn into a fistula so I might as well accept that I'm going to be dealing with this for years and be miserable like they have.  It's troubling.  A girl followed me on instagram and has been sending me messages claiming her UC was cured by diet, trying to sell me her food coaching consulting services.  There is no cure for IBD. Maybe she has no active disease and maybe she'll be lucky and it won't come back.  But I too have had times of remission.  I had times of no medicine even...a few years of it actually.  And then it came back.

Modern snake oil salesmen abound in the internet age.  It's a concept that has always fascinated me.  I own an antique bottle of Dr. Pierce's Golden Prescription....a snake oil that was produced here in Buffalo right on Main Street Downtown.  Now people tell you that you can send in your saliva and it will tell you what foods you should eat, people tell you about your leaky gut syndrome, your gluten intolerance.  And yes, I know there are real conditions, but believe me when I tell you that my disease is not caused by food.  Since I was 15, I have tried so many different diets...I've tried gluten free, I've tried sugar free.  Heck, I gave up dairy for five years because I was told I was lactose intolerant, still had stomach issues, and ended up with osteopenia (the beginning stages of osteoporosis) from not having calcium while I was growing.  I know that people want to help when they make these recommendations.  But I'm the girl sitting researching in a copy of Physicians Desk Reference, reading scholarly scientific articles and actually researching my disease.  When you're to ask me if I've tried these vitamins or giving up dairy, or smoking some weed, you make me feel like you think I'm choosing to be sick.  I'd never chose this life.  I long for health.  I'm an active person.  My entire life revolves primarily around active transportation.  And I was able to ride my bike exactly twice this entire summer.  You have no idea how hard it has been for me to feel trapped in a body that doesn't do what I want it to do.  I'm not complaining, I just don't think people realize that when you suggest I "just try this" as if that will cure me, it feels incredibly insulting.

I started back at work last week.  Worked a few hours a day to get out of the house and back onto somewhat of a schedule.  I'm back basically fully this week.  I still get tired fairly quickly and I'm still pretty much stuck in my apartment when I'm not at work.  I can't really be away from a bathroom stocked with my supplies.  I had to miss the BN360 Kick Off Party last week, where I was being honored as one of Buffalo Niagara Spotlight Young Professionals.  I had to cancel a speaking gig I had scheduled for Monday to speak to a new group.  There's an exhibit opening at the History Museum this week and I won't be able to attend any of the festivities.  I've had to miss two meetings of a discussion group I'm a part of at the TR Site.

I hate feeling like I'm missing out on things.  But I keep reminding myself that if I had to drive to work, I wouldn't even be able to work, since I'm still not cleared to drive, so I'm lucky in that regard.  All I can do is what I can do.  And right now, that's work and then go home and sleep.  And sometimes sit at the Public Espresso counter (have I mentioned how much I have loved them thru these two months of illness...having friends located snugly inside my building has been a lifesaver!!  Check out their new space that opened today, you will love it!)

I've been having pretty weird headaches...but part of me wonders if that's just from my eyes.  My eyes are pretty close to being back to their normal, but it's just off enough that it's annoying, so I wonder if that's what's causing the headaches.  As someone with inflammatory bowel disease, I can't take NSAIDs (over the counter painkillers like Motrin, Advil, Aleve, etc)...so headaches are annoying.  I usually treat them with caffeine, but I'm not using caffeine right now because I have to keep an eye on things that affect my bowels post-surgery.  I haven't taken any of prescription painkillers since Thursday, so I'm hoping not to take any more of those.  I'm also experiencing some pretty significant arthritis in my left ankle again.  I think it's from tapering the steroids, so I went back up a notch this those this week and we'll try again next week.  I have steroid chipmunk cheeks these days, and my already normally super round face looks ridiculous.  People say they can't tell, but I can tell and it drives me crazy.

I follow up with my surgeon on Friday.  I also have my next Entyvio infusion that day, so it's a big day for me.  I had my now regularly scheduled bloodwork done today.  I have to go monthly to monitor things.  I'm looking forward to seeing those results.  I also see my GI next Tuesday so I'm looking forward to touching base with her to see what she thinks about my abscess.  It could be a sign I have Crohns Disease and not UC, so I'm interested to get her views on that.  At some point, I have to followup with my primary care doctor.  I can not stress enough how important it is to have a primary care doctor you trust and who will stand up for you. She fought to get me diagnosed in ways that other doctors failed me.   I look forward to filling her in on the last few months and everything that's happened!  Nurses from her office have called me since surgery just to check in in my recovery and whatnot, which I really appreciate.

So yeah, that's where I'm at this week. Just another week in the life with a chronic illness(es).

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!