My first colorectal surgery

One thing I haven't really talked about on here lately is my Ulcerative colitis.  With all the issues with my eyes, the UC was kind of second hand.  In the battle between vision and a colon, you worry about your eyes first.  But I have been in a UC flare, one of the reasons I'm on oral prednisone is to treat that. 

What does it mean for me to be in a flare?  Generally increased bowel movements.  I don't go into these details often because "you're not supposed to talk about poop" but this is my blog and I'll poop if I want to.  I won't go into all the details on here about my disease, but for me, I generally go to the bathroom twice every morning when I'm healthy.  Once right when I wake up and then generally within the first hour or two of being awake.  When I'm in a flare, I can go up to 15 to 20 times a day.  I was going about 7 to 8 times a day when my eyes first started acting up in September.  It's controlled well by the steroids so I was going maybe 3 times a day.  I keep track of this all in an app designed for patients with IBD.

I started to have some pain on Thursday.  I thought it was just hemorrhoids/rectal pain acting up.  When I was first diagnosed in 2002, my disease started as ulcerative proctitus, meaning that most of the inflammation is found in the rectum and last six inches of the colon.  Over the years, it became leftsided colitis, meaning the last turn of the colon down is affected, and then to pancolitis, meaning my entire colon is affected.  Since my disease starts in my rectum, pain down there is pretty common for me.  So I didn't think too much about it even on Friday I was having trouble walking home from work.  I just continued my Epsom salt baths, Metamucil cookies and prepH treatments, which usually clears things up in a few days.  Since I wasn't having super increased bowel movements, I wasn't too concerned at first.  As the weekend progressed, the pain got worse and worse.  By about 5am Sunday morning, I could not handle it.  My mom brought me to the ER.  I don't think she thought I needed to go until she actually saw me in person.  I have an extremely high threshold for pain.  This was literally the worst pain I have ever felt in my life.   Ten out of ten.  The angriest face on the pain chart.

We got to the ER and they took me back right away.  I couldn't sit in the chair in triage, because it hurt so bad to sit (or move).  As we walked back to the room, I ended up starting to pass out and had to be wheeled into the room via wheelchair.  They hooked me up to fluids and pain medicine, and started me with some prep to drink before a CT Scan.  The CT Scan was really hard on me because laying on my back was agony.  The girls in CT propped up my feet and I gritted my teeth and held my breath so they could figure out what was going on.  It was a perirectal abscess. Horseshoe shaped and 6.6 by 6.5 by 7.7 cm is size.  That is pretty large, if you're wondering.  I needed emergency surgery to drain it.

I was in surgery by about 5pm and was back in the hospital room by about 8pm.  Immediately after waking from surgery, I had less pain and agony.  Still some pain, but so much less and no more pressure.  I was hooked up to fluids and IV meds and my body swelled and I was up every single hour to call the nurses to help me to the bathroom so I could pee, which took more effort than you'd think.  I honestly had muscle soreness like I had gone to the gym from lifting myself in and out of bed without letting my butt touch the bed.  Want a core workout?  I don't recommend this one, but it will work.

I spent two days in the hospital.  I couldn't leave until I moved my bowels.  That first movement hurt.  A lot.  I got home Tuesday afternoon.  I'm happy to be in my own bed and my own bathroom.  I've been resting mostly.  Watching Netflix and reading and trying not to let my brain turn into mush.  Lots of baths and showers to keep the wound clean and my muscles relaxed.  I can go back to work when I feel ready, but it may be a few more days.  I can't be away from my supplies and a restroom for very long.  I can't lift things.  Standing in one place for too long hurts and makes me feel woozy.  I've been walking the halls of the Lafayette every few hours to keep myself moving.  Each time after a walk, I generally lay down and fall asleep for a little while.

My body is tired and sore.  I'm taking pain pills and antibiotics and steroids and eyedrops and a slew of things.  I had to make a chart to keep track of  all of my medicines.  Mentally, I'm starting to get tired.  I've had friends come and visit the last few days which has been really great.  I've gotten cards and phone calls and flowers.  I feel well supported and loved.  But I can't help but be sick of this.  I know I shouldn't complain.  I know I am so lucky to have had this disease for more than 15 years and this is the first time I've had to have surgery, the first time I've even had to talk to a colorectal surgeon.  The guy in the hospital room across from mine lost his colon on Monday.  He spent the night before crying over the loss of 5 feet of tissue that was a part of him.  My roommate in the hospital was a 90-something lady who was on TPN (tube feeding) and needed two orderlies to help her sit in a chair for an hour a day.  I honestly felt a little privileged sitting in this unit, with my normal diet and ability to walk around.  But still, this constant being sick, this struggle is a lot.  And all I want to do is ride my bike and do yoga and feel healthy again.  It's been 14 months since the lupus symptoms came.  Fourteen months since I've felt normal.  It's just been one thing after another for 14 freeking months.  I just really need things to start changing.

Ok, enough complaining Ang.  Here's a list of things I'm thankful for:
1.  My roommate at the hospital was a blessing.  She was the sweetest woman.  We kept going "Hey, you ok?"  "Yeah, I'm ok, you ok?" every couple of hours.
2.  I have amazing friends who have come to my apartment to get me things while I was in the hospital, visited me in the hospital, have brought me food, sent me cards, and just been so supportive.
3.  I am totally not gonna get hooked on pain pills because every time it's time for a pain pill, I think of how I can't become one of Mark Poloncarz's statistics in the Opiate Epidemic and I've honestly been taking less pain pills because of it.  Thanks Mark!
4.  My office is so supportive and has worked with me through all of this.  And I don't have to stress about work...any more than I do normally (because I love my job probably a little too much.)  But to know that their first priority is me being healthy is a huge blessing.
5.  I can't lift things, but I live in a building with friends who work here, so I was able to ask one of them to take out my garbage today because I had some stuff getting stinky in one of the bags.
6.  Being stuck home and able to read is far far, far superior to being stuck home and legally blind.
7.  I MET ALTON BROWN TODAY!!!  He was at the coffee bar in my building, Public Espresso.  I guess he met them 3 years ago when he was last in Buffalo and came to visit today to see all the things they're up to.  I'm so excited for my Public Espresso buddies and all the good things they have going on!  #publicespressogroupie

This latest episode in my health is going to set me back a bit financially.  Please consider donating to my GoFundMe if you are so inclined.  For those who have contributed, thank you and I love you.  Every bit helps. https://www.gofundme.com/cydtz2-angelas-medical-fund

Don't want to donate online?  I also accept food, runs to CVS to pick up gauze, wipes and supplies, book and movie suggestions, and visits to keep me company! Your love and prayers also mean the world to me. xoxo

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!

Entyvio Infusion Number Two

I had my second infusion of Entyvio today.  I had to delay it a week because I had a nasty sinus infection.  Entyvio suppresses your immune response, so it wasn't surprising when the sinus infection knocked me pretty hard.  I had multiple days of a fever over 102, which is insanely rare for me.  My primary care doctor put me on antibiotics pretty quickly, to nip it in the bud.  It's been two weeks, and I still have a bit of a cough, but it's getting there.  They won't do your Entyvio infusion if you're on antibiotics, so I had to wait an extra week.  Hopefully after this, everything stays on track since I've heard it's pretty important to stick to the loading doses schedule.

The infusion went pretty well.  The nurses still don't know how to deal with my veins.  I'm so tired of being treated like a pincoushin and having them digging around my arms.  The nurse today didn't even seem to know how to tie a tourniquet right. I've been dealing with regular bloodwork for more than 15 years, I know how to get my veins, I know the best places to prick.  Why don't the nurses trust the patient knows best when it comes to these things?  The second nurse got me on the first stick (after five sticks from the first one).

I've had a strange response to my posts about this.  I've been trying to post more about my diseases to raise awareness. People have asked me some of the strangest questions.  I think a lot of people think this is something new that I deal with, but it's not.  Here are a few things to know about my disease:  This isn't something I'll ever recover from.  I will not get better.  This is something I'll be dealing with for life. This is something I've dealt with for more than half of my life.  It's my reality.  Ulcerative colitis is a chronic condition that will be with me until the day I die.  There are many dark realities to this disease. I am extremely lucky, as far as patients with UC are concerned.  I know how bad it can get.  My cousin died from the disease that I have in my gut.  I do not need, or want, your prayers, your sympathy or your pity.  I post about it to raise awareness, because it's a harsh reality that millions of people are dealing with.  More than 1 in every 200 people suffers from Inflammatory Bowel Disease.  And it's hard to talk about, because we're taught from a young age that it's not polite to talk about poop.  And there's a lot about my disease that I don't talk about, and I'll never talk about with anyone except my doctor and maybe a few of the people I'm closest to.

But honestly, the majority of the time I AM FINE.  Please do not worry about me.  I am lucky that I am able to work.  I am lucky that I am able to live a relatively normal life.  Sure, I have a lot of doctor's appointments, and some days I feel not so great, but for the most part, my illness is barely even something I think about.  I will likely have to spend the rest of my life on medicines that suppress my immune system to stop my body from attacking itself.  It's something I've learned to live with.  Yes, I have an increased chance of getting sick.  But I still ride the bus and spend a lot of my time around the public...and let's face it....all people are grimy and germy and gross at some points.

I have a lot of people ask me about diet too.  I spent five years avoiding dairy.  I've gone gluten free. I've used probiotics.  I've gone meat free.  None of it worked.  Over time and through trial and error, I have learned what works for me from a diet perspective.  I cannot stress enough that my disease is NOT caused by food.  Some foods will make me feel more uncomfortable when I'm in a flare, but the disease is an autoimmune disease, meaning my body attacks healthy tissue.  From a diet perspective - I mostly eat whole foods, with very little processed foods.  I like to know where my food is coming from and what I'm putting in my body.  Local fruits and veggies from the farmer's market and eating what is in season is important to me, from an ethical and environmental perspective.  My stomach has trouble with raw vegetables, and many high fiber foods are off limits, but it all depends on how I'm feeling that day, what else I've eaten lately, and the quantity of whatever I'm eating.. I tend on the anemic side, so I try to get a lot of iron (and supplement with extra iron when I need it) from things like liver, spinach, beans and nuts.  But there are days that nuts will be the worst thing for me to eat. And I'm not perfect, and there are also days where all I'll eat is boxed Annie's Mac and Cheese and Lipton Cup of Soup.

I've had people be surprised when they find out that I have all of this "wrong" with me, because I never complain and I am such a positive person. Here's the truth - you learn to deal with it.  I was raised by a father who's solid daily advice is that the world is not fair and that you just have to deal with it.  I was raised not to dwell on things you can't control.  Being positive and happy is a daily choice that I make.  My diseases do not define me.  I can't stress actually how little I think about them.  Life is too short to worry about what could happen or to mope around thinking "woe is me".  Because the reality could be way worse than you could probably imagine, but I choose every day not to think about it.  If you live each day to the fullest, you don't have to worry about it. There are no guarantees in life.  All you can do is deal with the hand of cards you were dealt.  You'll be happier if you stop worrying, stop complaining and just start living.  And if you have a bad day, let yourself be sad or mad or whatever.  Feeling feelings is good and healthier than holding things inside.  And some days, just order your favorite food from your favorite place and indulge.  For me, it's a banh mi from a restaurant here in Buffalo.  It's the most delicious sandwich I've ever eaten and it immediately makes me feel a little better.

Entyvio Day One

I decided I wanted to blog about my experience with Entyvio.  I need to talk about my disease more.  I suffered so much this past year in silence, and that's not being a good advocate.

Today, I started on Entyvio.  It's a biologic medicine, so it actually changes your immune system to work towards lessening the inflammation in your body.  Humira, the drug I used to take,  is an Anti-TNF, meaning that it blocks the body's response to "tumor necrosis factor", which I believe is a type of protein.  Another common drug for those with crohns and colitis is Remicade, which is another Anti-TNF.  Entyvio works a littJle differently, by blocking lymphocyctes (white blood cells) from entering the gut by binding to the cell.  These medicines are complex, and whenever I research them, I'm always thankful I took that Human Biology class at Geneseo (shoutout to my roommate Liz for drawing pictures of the body systems with me while studying!)

Whereas Humira is self-administered, Entyvio is not.  I liked the convenience of being able to give myself a shot for the Humira.  Some people have trouble with giving themselves the shots.  Needles have never bothered me...I think as a result of my mother being a Type I Diabetic; I'd watched her give herself insulin shots and test her blood multiple times a day since I was born.  Entyvio is administered via an infusion at an infusion center.  The most convenient center for me is at Dent Tower, which is thankfully in the neighborhood where I grew up, less than a half mile from my parents house.  These things are important to consider when dealing with a chronic illness and not owning a car.  Luckily, I had my mom's car today, so I didn't have to worry about feeling sick on a bus after the infusion in case I had a bad reaction.

I was really nervous leading up to the infusion.  I drank about 100 ounces of water yesterday, since I'd read a lot of people say that being extra hydrated made it better.  I started to worry they wouldn't be able to find a vein.  Every time I get bloodwork or need an IV, everyone complains about my "rolly veins" and I end up with bruises and multiple stick sites.  What if they couldn't find a vein, and I couldn't get the drug?  What if I had a bad reaction?  What if I develop serious side effects?  Why did Humira work for more than two years and then suddenly give me drug-induced lupus?  What if something similar happens again?  How long would it take to work?  What if it doesn't work?  My colon has been acting up pretty badly, what if it takes a few months to work and I have to live like this for a while?  I barely slept last night.  I drank cup after cup of chamomile tea, trying to calm my nerves.  My hands started shaking to the point where I had to stop using my favorite mug because I was afraid I would drop it and it would break.

I got to the infusion center this morning, they quickly checked me in.  The nurses and staff there were all very nice.  The nurse who set up my IV told me that she'd had a lot of patients tolerate the drug very well, which helped to ease my troubled mind.  She took my temperature and blood pressure.  She was able to get a vein on the second try, on the inside of my forearm.  I had asked my friends for musical suggestions, and my friend suggested The Beatles, since it would be familiar and calming.  So with Ringo, John, Paul and George keeping me company, I got my infusion.  It takes about 40 minutes, they run the drug through the IV and then they flush it out with some fluids to make sure you get all of the medicine.

It's been about 8 hours and I feel alright so far.  I was pretty tired right after, but I think it was more from the stress and not sleeping, rather than from the drug.  I go back in two weeks for the second one.  The way Entyvio works with scheduling is first infusion, two weeks, four weeks and then every eight weeks after that.  I'll write more after my next infusion or update if anything changes between then and now.

Doctors and Lupus and Transfusions, Oh My.

I last wrote here in December.  I had tried to make a Rheumatologist appointment in October...the first time they could see me was February 24th, because doctor's offices make it so difficult to be seen by a specialist.  On March 14th, I was diagnosed with Drug-Induced Lupus.  The Humira I had been injecting was acting like poison in my body.  I had symptoms of this for more than six months.  In fact, when I first saw my primary care doctor in September, we had thought it could be possibly lupus.  Dermatologist and Gastroenterologist insisted it was not from the Humira, so I kept injecting myself with poison.  The pain got worse and worse.  I couldn't open things with my hands, I couldn't walk up the two steps onto the bus without assistance from the bus driver.  I lived in constant pain.  I can't take over the counter pain-killers, because they destroy my stomach and cause significant bleeding in my colon.

My Gastroenterologist told me he'd never heard of Drug-Induced Lupus from Humira.  He insisted on more tests to see if I had developed antibodies to the Humira and to check the Humira levels in my system.

The Rheumatologist gave me a steroid shot to treat the lupus.  My body reacted poorly.  I got really sick with a horrible pain in my back.  I couldn't stand up straight.  The pain took my breath away.  I went to Immediate Care, where they diagnosed me with a bad kidney infection.  Two days later, I ended up in the emergency room after literally collapsing in pain in the lobby of my apartment.  Doctors there continued to diagnose me with a kidney infection, gave me some fluids and sent me home with stronger antibiotics.  Spent the next week on the couch with a heating pad, drinking my body weight in fluids and watching Veronica Mars.  My Primary Care Doctor got the reports from Immediate Care and the ER, realized that none of the cultures developed anything so I did NOT have an infection.  She rushed me to imaging to make sure I didn't have a pulmonary embolism (blood clot in the lungs) and ran some more tests.  For a month, I could barely walk, stand up straight, or breathe.  My theory is that it was all from the steroid shot and the lupus.  My Rheumatologist would not treat my pain, or even take my pain seriously as I sobbed in their office.  They told me to follow up with the Gastro and to come back in October.

I was prescribed a week of oral steroids and physical therapy by my Primary Care Doc.  The steroids allowed me to feel perfect during my trip to NYC.  I was able to walk more than 6 miles a day, which sounds like nothing for someone as active as I typically am, but I honestly at the time, I could hardly walk the half mile to my office.  After the oral steroids ran out, the pain and stiffness came back.  Over the last two months of PT, I have relearned to use, stretch and strengthen my muscles.  I go twice a week to PT, and do the exercises/stretches three times a day.  It's the most diligent I have ever been with a workout regimen.  I'm so thankful that after losing a full month of my life due to pain in April, I can finally move properly again for the most part.

In May, the Gastroenterologist emailed me with "good news" that my Humira levels were low so I could go back on Humira but needed to switch from once a month to twice a month.  I immediately started looking for a new Gastroenterologist.  Again, it's so hard to get an appointment as a new patient, which is a disgusting part of our medical system.  I refused to believe that going back on Humira was an option.  I needed a second opinion.

From March until July, my digestive system has been completely untreated.  The only good news to me was that as the Humira got out of my system, the ulcerative colitis symptoms began to reappear.  It made me feel good to feel bad, since at least the Humira had been treating the ulcerative colitis, so even if I had all these problems, at least I could hold on to that fact.  As the rest of my body has healed, my colon has begun to flare...reminding me that yes, you do have this disease in your gut, you do not have a normal digestive system.

The lupus symptoms have slowly improved as the Humira has gotten out of my system.  It takes at least 3 to 5 months for it to really leave your body completely, and I was on it for almost three years.  My feet and knees no longer ache in pain when I walk.  My hair has begun to grow back..it's weird to get excited about things like maybe shaving your legs.  I honestly had no leg hair at all....baby smooth legs for months.  But I had bald spots on my scalp, and every new hair is a chance that I won't have to start wearing wigs.  My head itches as I can feel the new hairs poking through my scalp.  It's the best itchy feeling I've ever felt in my life.   I still have stiffness in my fingers and wrists, but hopefully it will continue to improve.

I saw the new Gastro last week.  She seems nice.  She will not put me back on Humira, and believes I did indeed have Drug-Induced Lupus.  She wants me to start on a new drug, Entyvio.  She gave me oral steroids to hold me over in the meantime, which I'm already so thankful for.  Anyone who has lived with symptoms knows what a relief it can be to treat them.  I'm a little scared about the Entyvio.  It's the kind of medicine that you have to go to a transfusion center and get injected via an IV.  It will start with one transfusion, then two weeks later, than four weeks later, than six weeks, then hopefully every eight weeks.  Cross your fingers my insurance approval coverage of this and that it doesn't cost too much.  I've already spent more than $3,500 out of pocket on medical expenses in 2017 alone.

I'm scared to start on another biologic, but also excited to maybe feel normal again.  I'm scared of all the millions of side effects that come from these medicines.  I'm scared that they'll have trouble getting veins to actually do the transfusion and I'll have to get a port.  I'm scared that the medicine won't work.  I'm scared that I'll get another scary side effect.  But I'm hopeful as well. Hopeful that maybe I'll get another few years of relief.  The Humira, for all the issues I've had this past year, it did give me two full years of feeling great.  Hopeful that maybe my colon will someday stop being an issue because maybe we'll find a cure.  Hopeful that maybe someday we'll have better health care in this country, that years of fighting doctors and insurance and drug companies will some day be a thing of the past.

As most of you know, I hate writing about this kind of stuff.  I am an extremely positive person, I hate admitting that I have anything wrong with me.  I refuse to let it hold me back.  This past year has challenged me in ways I'm still trying to figure out.  My health struggles have just been a part of the emotional burden I've been holding on to this year.  But it's all welling up inside of me, making me stronger, and making me better suited to stand up for all the things I believe in, to keep fighting the good fight.   I'm thankful to you, whoever you may be, for reading this, for listening to me, for putting up with me, and for supporting me in some way.  And to my close friends who listen to me complain all the time, you know I'd be lost without you!!