All My Eye Doctors...

Most people, when they go to an eye doctor, they see an Optometrist.  I've been going to the same eye practice for a long time.  My first eye doctor when I was seven was Dr. Lewis. We stayed with him at when he founded his "new" practice in 1997.  Dr. Lewis was one of those great old time doctors who really knew his patients.  He was super excited when I went back to school, and even more excited that I was studying political science. He was so encouraging to me and believed that more girls needed to study and enter politics.  My usual doc these days is Dr. H, who I started seeing when Dr. Lewis reduced his hours (and finally retired a few years back) and he is great.  Dr. H was actually listed as the "Best Eye Doctor" on one of the Best of Buffalo lists a few years back.  He is an optometrist.  In the United States, they are Doctors of Optometry (O.D.).  Optometrists are primary care doctors for eye care.  To obtain an O.D., you do four years of undergrad, plus four years of Optometry school plus an optional year of residency.

After you see the Optometrist, if you need glasses, you go to an Optician.  Mine is named Dennis and he's the best.  He's known my family for my entire life and he's built every pair of glasses I've owned, except for one.  That one pair was a cheap one from Sterling Optical when I needed quick glasses because my vision shifted a lot very quickly due to my uveitis.

Because I have uveitis, I also see an Ophthalmologist.  Mine is through the same practice as my Optometrist.  Ophthalmologists are physicians who specialize in eye care, so they hold an M.D.  They are trained to manage complicated eye diseases and surgery.  To obtain an eye M.D., you do four years of undergrad, four years of medical school, three years of ophthalmology training (residency) and an optional year of specialty training (fellowship).  Dr. M is my ophthalmologist.  He first diagnosed me in 2009 and treated my uveitis for the first few years, until it was clear I needed more.  When I'm not having a uveitis flare, I still see Dr. H, mostly because he thankfully still works out of the office that's on a bus route instead of in Williamsville.

Sometimes, Ophthalmologists specialize in a particular area of the eye, such as the retina or cornea.  Because my uveitis is so bad, I also see a Retina Specialist.  My first Specialist was through a a practice that had a poor standard of care for conditions like uveitis.  Taking a week to schedule for appointments for a uveitis flare was irresponsible on their part so I stopped going there.  For reference, my other doctors have seen me outside of business hours to get me in the day I start a flare because it's serious stuff!  So, I was referred to Dr. J.

I've been seeing Dr. J for my eyes for the past 5 years.  He has done a lot to help my vision.  He helped convince me it was time to start on a biologic medicine to treat my ulcerative colitis, since my colon was affecting my eyes so greatly.  He's the doctor who administers the shots in my eyeballs when the inflammation gets bad and I'm not sure I would trust anyone else with eye shots.  I have seen him 12 times in the last year.  It's kind of ridiculous how often I go to the eye doctor.

I also saw another eye doctor, an Oculoplastic surgeon, who is an opthalmologist who is trained in ophthalmic plastic and reconstructive surgery.  I had a severe boil on my eyelid in 2015.  Boils were one of the side effects I had from Humira that I don't really talk about much.  My dad was able to lance most of them for me.  One of the benefits of having medically trained parents (he was a hospital corpsman in the Navy) is that sometimes you can save on the copay.  The boils were mostly on my neck, back and shoulders.  The one on my eyelid required more delicacy. The doctor I saw, Dr. S, did a great job and I barely even have a scar.

So, I had my 12th follow up uveitis appointment since last September with Dr. J. My cataracts have grown.  A side effect of the steroids that save my vision is growth of a cataract.  My type of cataract is the type that looks like Vaseline was rubbed on the inside of my lens.  It causes my vision to be blurry and causes trouble with double vision in changing light conditions, for example walking from outside to inside a darkened room, or walking from inside to outside on a sunny day.   I have trouble reading off the computer at times because of my double vision.  I have trouble in night conditions because lights have halos around them. I also have synchiae, which is when the inside of your iris gets stuck to the lens, which is caused by the inflammation and scar tissue.  If you look at my pupil, you can see that it's kind of a weird shape.  The cataract is also quite visible in my right eye, especially if you look at me while my eyes are dilated, it looks cloudy.  It's a common type of cataract that a dog gets, so if you can the way older dogs' eyes often look, that's the way my eye is heading.  Who needs cat eye glasses when you have dog eyes?

Thursday, I went to see Dr. M.  The cataracts are likely what is preventing my vision from being corrected to 20/20 vision with lenses.  My severe myopia (nearsightedness) is too bad for lenses to actually be able to correct.  When I talk about my vision lately, I'm giving my vision with my glasses on.  My vision is at 2/30 in one eye and 20/50 in the other, with glasses on.  Without my glasses, I can't even read the Big E on the chart.  Because my eyes are not correctable to 20/20 by lenses, I am now visually impaired (I've technically been that since last September since my eyes have not been corrected by my lenses since then). New lenses can not correct this.  We had to talk about my options.

I know that there are plenty of blind and visually impaired people in the world who live fulfilling, normal lives.  I know that my vision loss is minor in comparison.  I know that I shouldn't complain too much.  But it's hard to accept.  I haven't been able to see properly for a long time, over a year. I'm so sick of it. I can't read books for longer than about 15 minutes without a headache.  I can't read the menu across the coffee counter or read street signs or subtitles on the tv.  I can't do a lot of my historical research because looking at microfilm is simply not an option right now.  I want to see again.  I want my life back.  It was awful during the refraction exam, which is the usual part of what people think of as the eye exam if they have glasses.  The technician kept asking me "1 or 2" and both were super blurry.  I started crying, which then of course makes your vision more blurry.  Even the clearest they could get my eyes was still super blurry.  I've cried a lot since then too.

I know cataract surgery is normally pretty minor.  But it's a different case for me and my eye struggles.  If I have surgery to remove the cataracts, it can cause chronic inflammation.  I already have chronic inflammation.  We'd try to nip it in the bud by doing a steroid injection two weeks before the surgery and loading my eyes with steroid eye drops before and after the surgery.  We'd have to monitor things closely.  There is a risk inflammation could get out of control and I could lose my eye.  Also, steroids can impair wound healing.  Methotrexate can adversely affect wound healing.  Simponi can delay wound healing.  Slicing the eye open causes a wound.  I had three wounds from my surgery last October.  One is still open now.  It still bleeds. Almost a year of bleeding. What if my eye doesn't heal and I have a little flappy flap flopping around in my eye?

With cataract surgery, you also have to decide what focal point you want your new acrylic lens to be.  I could chose to see up close.  I could choose to see far away.  It's so hard to decide.  I want to see up close, to be able to read my maps and my books, right?  I don't mind glasses, I've worn them since I was 6 or 7, so they're basically a part of my face by now.  I wore contacts for 3 or 4 years, until I was diagnosed with uveitis.  Because of my eye problems, I'm no longer allowed to use contact lenses (also can't wear mascara or eyeliner) because there's a risk of infections and other complications.  But if I could get rid of glasses, should I?  So many people would jump at the opportunity to be rid of their glasses. That's why things like Lasik are so popular. I'll never be eligible for Lasik because of my eye conditions.

I'm terrified of what the next few weeks/months could be.

On top of all this, we're still not sure the new medicine (the Simponi) is working for my colon...its too soon to tell.  My eyeballs are taking priority.  All of this is caused by my bum colon. Ulcerative colitis is so much more than just a pooping/bathroom disease.  Sometimes I wish it were worse in my colon...it'd be so much easier to just have one complication, to just have one disease to worry about, one doctor to go to.  Instead, I got the bathroom part with all this other stuff too.

Please don't offer me advice on this.  Don't tell me about how simple your cataract surgery was.  Mine is not simple.  Don't suggest I get a second opinion.  I have enough. My eye doctors are working together on this.  My eye doctors who I have trusted the care of my eyes for the entire almost decade I've been dealing with this.  I have seen other doctors, and always fallen back to the ones with the answers.  I've weighed my options back and forth and back and forth.  It has to happen.  I'm too scared to lose my sight.  A glass eye could be a cool party trick though.

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. 

Awareness Week 2017

December 1st thru 7th is Crohns and Colitis Awareness Week.  Crohns and Colitis Awareness Week was created by US Senate Resolution 199 in 2011.  Crohn's and Ulcerative Colitis are two inflammatory bowel diseases that attack the digestive system.  Crohn's disease can impact anywhere along the digestive tract from mouth to anus, and UC impacts the large intestine.  Additionally, in many patients, IBD affects joins, skin, bones, kidneys, liver and eyes.  These are auto-immune disorders - basically the body decides to attack healthy tissues.

I have Ulcerative Colitis.  But I might have Crohn's Disease.  We're really not sure.  I've had some fancy expensive test that is supposed to tell you which you have, and it said UC, but the test is still experimental, so even those results are inconclusive.  I've had some erosion in my small intestine, which would be indicative of Crohn's.   My latest incident with the abscess also points itself towards Crohn's Disease.  Either way, I have Inflammatory Bowel Disease, and my treatment wouldn't change too much with a different diagnosis, so we haven't worried too much about what we call it.

In the last year, I have had a lot of extra-intestinal issues all connected to my UC.  I suffered from drug-induced lupus, a kidney infection, severe muscular problems in my back, a severe flare of uveitis, and a huge rectal abscess that led to my first IBD related surgery and a three day stay in the hospital.

Here's an infographic about my IBD.  I liked the one on the UK website better than the US one hahaaaa.

It's been a month since my surgery.  I'm not really in the mood to talk about living with UC during awareness week.  I've been sharing a lot more than usual because of the issues I've been having lately.  And people for the most part are pretty nice about it.  But there's so much more I wish I could share, that I wish I could say.  I've thought about making an anonymous twitter account, so that I can share all the gory details...because  sometimes you need to share the nitty gritty gross details.  I think it's important that people know that this disease is horrible and embarrassing and demeaning at times and I'm thankful for my friends who let me tell them those details!

I've been obsessed with Selena Gomez and her story lately.  As someone who suffered from lupus for much of the past year...I love the fact that she's willing to talk about it.  That she's able to say "yeah, I almost died" because of this is great and empowering.  I like that better than the commercials with celebrities such as an NFL player with IBD in them...because sometimes people see those commercials and they think "ok, yeah, it's a disease, but you can have it and play professional football and be fine".  For most of this year, I couldn't run to cross the street, let alone across a football field....I'd give anything just to be healthy enough for a nice bike ride.  But a life with an autoimmune disease is not always rainbows and sunshine and sometimes it just really sucks.

I go back to the eye doctor and to the surgeon this week to follow up and see how things are healing on both ends of my body.  Next week, I have some more bloodwork done, and then follow up with the rheumatologist.  So many doctors appointments.  2017 is going to be remembered as the year of the doctors appointments.  Blah. 

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!

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!!

  

When IBD is more than just IBD...

I guess I only write in here when it's an awareness time of year.  I still don't really like to talk about my health, but I know that I should, and alas this week is Crohns and Colitis Awareness Week.  Be IBDvisible!  

I was diagnosed 14 years ago; I have Ulcerative Colitis, a form of inflammatory bowel disease (IBD), but I've likely had the disease at least 17 years.  IBD is a disease of the digestive tract.  My type of Ulcerative Colitis is called pancolitis, meaning it affects most of my large intestine, from the very end all the way to the cecum, where your colon attaches to my small intestine).  My disease mostly lives in the end of my colon and rectum, but I've also had some erosion problems in my small intestine.  This means I could have Crohn's Disease (another form of IBD), but, for now, my diagnosis is UC.  IBD is an autoimmune disease, resulting from an abnormal response by my body's immune system.  Normally, the immune system works to protect your body from infection, in my body, the immune system mistakes the intestines for foreign or invading substances.  This sends white blood cells to the lining of my intestines, producing chronic inflammation and ulceration.  

Two and a half years ago, I started on Humira, a dreaded biologic drug.  Humira works by binding to a protein in the body called tumor necrosis factor (TNF), which is produced by the body's immune system.  In people with IBD, there's an overproduction of TNF associated with inflammation in the digestive tract.  Humira is a TNF blocker, which binds to the TNF and blocks its action in the body, helping to reduce inflammation and symptoms of IBD.  Since Humira lowers the body's immune response, people who take medicines like Humira have a much higher risk for serious infections, such as tuberculosis, and other viruses, fungi, and bacterial infections.  Thanks to Humira, I also have a higher risk for lymphoma and other cancers.  One of my cousins died from complications related to the disease that also plagues my bowels, so I took these risks very seriously.  

The risks were weighed against the benefits, and with a lot of support from my wonderful GI doctor, I started on Humira.  I give myself injections every two weeks.  It was working, and for two years, I was feeling alright.  My hair stopped falling out.  I stopped having to run to the bathroom.  I stopped having to use enemas and take 22 pills a day.  In April, my colonoscopy was completely clear and healthy.  My white blood cell counts in August were the lowest they had been in many years, and less than half of what they were before I started Humira.  

Then things started to change.

Over the summer, I had what I thought were infected mosquito bites - one in June, two in August.  They gave me antibiotics.  I got a really stiff neck in July that made it so I couldn't turn my head for few days.  More of my muscles started to cramp up.  I'd wake up in the night with cramps in my hip joints that would leave me howling in pain and leave me sore for two days afterwards.  I thought I was dehydrated so I started drinking more water and taking more vitamins.  

My arm after 10 days of antibiotics - the red line was
drawn before my first doctor's appointment,
so we could measure how  big it got.
I wish I had better pictures of how big it got
(it was past the red line before the antibiotics)

In September, I woke up one day with six spots of what looked like hives.  They quickly turned into large spots of cellulitis/dermatitis - one on each forearm, one on my collarbone, two on my left leg and one on my right leg.  I went to my primary care practice, where I saw one of the doctor's, Dr. S, instead of my regular primary care doctor, Dr. P so I could get in sooner.  Dr. S called in Dr. P into the exam room to see these welts, because he wanted a second opinion on the crazy thing going on with my body.  

At first, they thought I was having an allergic reaction to Humira, and told me to stop taking the Humira until we can figure out what's going on.  They sent me for rush bloodwork, put me on medicine, and asked that I come back in two days to get checked. Two days later, I was better, but still inflamed, and in pain.  I almost had to miss the wedding of one of my best friends because my doctors did not want me to travel downstate for the weekend.  I had to promise that I'd go to the ER if things got worse, and text Dr. P updates throughout the weekend to let her know how I was doing (I seriously have the best doctor ever).  I got back from the trip and was referred to a dermatologist.  He thought they were infections resulting from the immune suppression from taking Humira.  

Right eye with uveitis.

I saw my eye doctor on a Thursday for an annual checkup.  Everything was good, I hadn't had a bout of uveitis since I started the Humira.  Uveitis is another autoimmune syndrome dealing with inflammation in the iris (the brown part) of the eye.  Humira is also used to treat recurrent uveitis, which I had suffered from twice a year for five years before I started the Humira.   Since we thought it was an allergic reaction, I skipped my 2nd Humira shot on a Friday and by Monday my eyeball was a mess.  My vision in my right eye dropped to 20/600 with my glasses on (20/20 is normal clear vision, 20/200 is legally blind).  So I got some steroids.  Two months later, and I will be finishing up the steroids for my eyes this week and my vision is back to normal (with my glasses at least...I'll still never see without them, and I'm ineligible to ever get corrective vision surgery due to my eye problems).  I'm so thankful for my eyeballs resiliency.  I have been told that for many people with vision loss from uveitis, their vision doesn't bounce back like mine does.  Uveitis is one of the leading causes of blindness.  For some reason, it's not my destiny to go blind just yet.  

After a few weeks of antibiotics, I had a new spot on my leg.  The dermatologist prescribed me steroids and told me I was free to start the Humira once I finished the antibiotics.  I saw Dr. P again, told her how my joint pain and muscle stiffness was getting worse.  She saw how swollen and puffy my hands were, sent me for bloodwork and referred me to a rheumatologist.  The RH panel came back negative but it doesn't always have a positive response during inflammatory arthritis.  The rheumatologist that was recommended can't see me until February 24th!!  I called other doctors trying to see if I could get in earlier, but alas, some of them are not booking new patients until MAY!!!  I was calling in October...so I'll have to endure four months of pain before the new doctor can begin to try to see if they can figure out what's wrong.  

Due to my Ulcerative colitis, I can't take over the counter painkillers.  They actually cause inflammation and diarrhea in people with IBD.  I've been treating my swollen joints and muscles with fish oil tablets, Biofreeze and lots of Epsom salt baths.  The pain moves around.  My hands are so bad at times, I have to ask a neighbor to open my pill bottles. This week, it's in my right knee the worst, but it changes from day to day.  Some days, I can hardly walk the pain is so severe.  Four months of this until I can even see a doctor who can maybe help treat me?  The system is broken.  

I finished on the antibiotics, and I started the Humira again.  Two weeks later, more spots, this time 2 on my leg.  I went to the dermatologist and had them biopsied.  Nothing conclusive came from that...it might be drug induced, but the fact that I've been on the Humira for more than two years leads them to think it's probably not. So, we still don't know what's going on.  I spent $340 on copays just on doctors appointments in the month of November.  This is on top of my normal monthly prescription co-pays.  And I'm not sure how much I spent on bloodwork for the 4 times I had blood drawn that month, since I haven't gotten those bills yet.  In a world where we're not sure what will happen with health care, I am honestly terrified.

That's where I am currently at medically.  This is what Ulcerative Colitis looks like to me.  This is what 1.6 million Americans suffer with.  Sure, some people with UC and Crohns Disease might play in the NFL or compete in the Olympics.  But most people look more like me - with lots of doctors appointments, lots of money spent, and lots of pain, lots of waiting, and lots of unknowns.  I'm currently a part of several research studies to help scientists learn more about my disease.  And some day, they will hopefully figure out what causes it, how to better treat it, and noone else will have to suffer from it.

So, yep, this is Crohns and Colitis Awareness Week.  What can you do to help?  One way you can help to raise awareness is to contact your congressperson and ask them to join the Congressional IBD Caucus or to support initiatives to provide better funding for IBD research.  More information about contacting your representatives can be found here.   Ask them to support things like "The Patients' Access to Treatments Act", which is important, not just for those of us with IBD, but many other diseases where treatments are costly and getting more so every day.  And most importantly, keep fighting vigilantly for health care, because drug companies and insurance companies make a lot of money off the backs of hard working people. Everyone should have access to health services without the fear of a financial burden.