The No Makeup Day

Have you ever read Psychology Today? I can remember the very first time I picked up a copy of the magazine.... It was in a Barnes and Noble and I thought it looked scientific and therefore possibly interesting. Instead, I found a multitude of articles that seemed designed to make you feel bad about yourself, including one on attractiveness - expounding on the idea that the more symmetrical you are, the more attractive you are.

I used to think about that study constantly because a few years ago, I had an eye surgery that was done poorly. (So poorly, in fact, that it didn't even solve the original problem.) It left me with a mild incomplete blink - meaning I can't shut my eye quite all the way anymore, and essentially no eyelashes on the upper lid. Neither were risks that I'd been warned about.

I waited for months for my lashes to grow back and for my eyelid to "drop down" completely, like Dr. Anna Rothstein, the doctor who did my procedure, promised. But neither happened. Suffice it to say that it was quite upsetting and that I learned the hard way to choose my surgeons more carefully.

And so began my life as a girl with an asymmetric face.

Perhaps if I'd hadn't read that article, or never seen a cosmetics ad featuring models with perfect lashes framing perfectly symmetric eyes, I wouldn't have felt so badly. But whatever the cause, I never felt the same after that and so I went from being the girl that wore makeup for fun, to the girl who wore makeup because she "had to." Every morning I would put fake lashes on one eye, and then eyeliner on both. Then I would stand back and hope that my eyes looked even enough for no one else to notice the differences.

I got sick of this routine quickly though. I missed going out without makeup on, but without it I felt so self-conscious that I literally wasn't able to look people in the eye. I found myself trying to turn slightly to the side, so that people couldn't see my eyes straight on. I decided it was worth it to spend the fifteen to twenty minutes each morning putting eye makeup on, so that I didn't have to feel so awkward. It's pretty terrible, feeling ugly all the time, and unfortunately, I think that this is something that many people with chronic illnesses have to deal with.

Anyway, last week I had a mini-breakthrough: I skipped my makeup for an entire day. All in all, it wasn't so bad. If anyone noticed my uneven eyes (which they probably did) at least they didn't act differently or oddly, which was pretty much my greatest fear. I think it's difficult to admit that you have a disfigurement, and even more difficult to show it. So I'm a bit proud of myself for being able to do that; I often don't feel very brave.

I think what precipitated this change was mainly that I was:

1. Exhausted - now that my inflammation is more under control, I've resumed my medical school plans and I'd been studying the night before. 
2. Not looking forward to a day spent pouring eye drops into my eyes and worrying about keeping fake lashes glued onto one lid at the same time. Trust me, this is quite an exhausting balancing act. Especially when you're putting in drops every few minutes, as I do. 

Ok, so maybe it wasn't really bravery that got me to do this... But hey! Progress nonetheless!

I still miss my "pre-surgery" eye, and hopefully one day I'll be able to fix the damage done, but until then I guess it's not the worst thing in the world to be a little asymmetrical. We all get a little down on how we look sometimes, so I just wanted to remind you all to focus on what you have, rather than what you don't. I certainly wish I had appreciated my eyes a little more before all of this.

For the imperfect. 

Above all shadows rides the sun. Let's just stare at the sun.

I've been delaying my blog postings out of a perfectionist desire to deliver nothing but good news regarding my health. Today was the day the realization that this was an absolutely stupid idea dawned on me. I went out of town this past weekend and was feeling quite good the day I left. Over the past few months I've been riding a bit of a roller coaster of minor health issues: colds and infections, some severely unpleasant treatment side effects, etc. So on Friday I thought, "I should write a post when I get home! Before something happens again and I end up with only mediocre news to deliver and feeling like that little cloud that follows people around in antidepressant commercials."

I swear I'm not trying to inspire this emotion and drive you all into the arms of Zoloft.

And then I woke up this morning with two very sore and moderately inflamed eyes. 

I have no explanation for why this happened. Things are definitely much much better for me now, but still a little unpredictable. Suffice it to say that I'm a bit tired of constantly reporting my symptoms. It's just, well, depressing! I don't like depressing. As proof, I will offer up the tidbit that my favorite Shakespearean play is As You Like it. You know, the one that the starts with a banishment and after a few disguises and some hanging of poetry on trees, ends with everyone getting married? Sometimes realism is overrated and you just want a reason to smile.

In a similar vein, my most beloved part of Lord of the Rings (the movie - this line was a rewording of the book) is when Sam says:

It's like in the great stories Mr. Frodo, the ones that really mattered. Full of darkness and danger they were, and sometimes you didn't want to know the end because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end it's only a passing thing this shadow. Even darkness must pass.

Well, I like the part where they destroy the ring too... But you get the point. I like heartwarming things! It's time to start skipping the darkness and danger in my story. It's getting tedious and while Tolkien may have been able to lead readers through three really long books before the happy stuff, I am not he. I would rather focus on the funny, the ironic, and the happy parts of my tale - as was my original intention, though I got a bit lost along the way. It's guaranteed to be more fun for everyone and it also ensures that I won't feel like a constant bearer of gloom who then needs to hide from her blog in shame. I will, of course, provide updates if anything very awful happens - which it won't! I am much improved from where I was this time last year. Or, if anything very amazing happens - which it probably will! Because remission seems very very close!

So in honor of this restated theme, the description under my blog title is being edited from the old, "a fight against dry eye, cicatricial pemphigoid, and autoimmunity," to what it now reads.

As Frodo says, "that's what I like. It makes me laugh."

Me too Frodo. Me too. 



This post was inspired by a Ukrainian Orthodox Easter weekend full of far too much food and apparently, so much fun that my immune system got a little excited too.

Veinless Wonder

Due to recent events, I feel the need to make those of you out there with "good veins" aware of your excellent fortune. First, I will define the term "good veins" to encompass those lovely visible (or at least palpable) bluish-greenish vessels that sometimes protrude, rope-like, along the arms of you lucky ducks. I never thought I'd envy anyone who looks like this:

 Courtesy of Wikipedia 

But look at that vasculature! I am jealous. Jealous enough to have wondered if starting a serious weightlifting regimen would help push my seemingly non-existent veins closer to the surface. You see, my veins are the shy, retiring type. The nurses look, they feel, they tourniquet, they hot-pack, they cut off my circulation with a blood pressure cuff until my arm turns blue, but still, the introverted buggers can't be easily found. For a girl who requires IVs/ blood draws at least 6 times a month, this is highly ironic. Case in point: one day I ended up being poked 7 times before the IV team (I like to think of them as a SWAT team for IV placements) was called. And after all that the IV was finally inserted in my most used vein, which I'd been trying to avoid all along as it was starting to develop scar tissue from the repeated punctures. Now, at the Wilmot Cancer Center, where I go for my treatments, you are allowed to leave IVs in for 72 hours maximum, assuming you prove yourself trustworthy enough to not inject IV drugs in to your accessed vein... I passed this test with flying colors by apparently being so naive about this possible use that I was looking around in desperate confusion asking, "what do you mean I need permission to leave it in? I promise to wrap it up and not get it wet or dirty or pulled out just please let's not do the great vein hunt all over again tomorrow!" The nurses thought this was cute and I could hear them retelling the story of how the thought of shooting anything into my IV "didn't even cross my mind" to my doctor - which made me seriously wonder how many people actually did think of this nefarious usage on their own.

And so the IV was left in along the inside edge of my right wrist for the three remaining days of my infusion. Over this period of time it proceeded to ache like crazy, presumably because it was in such a sensitive spot, and I was forced to mount feeble attempts at washing my hair left-handed since any movement of my thumb intensified the pain. As I have a fairly large amount of hair, this did not go well, and ultimately I was left with an unconditioned frizzy mess and a healthy regard for opposable digits.

Anyway, I do tell this rambling story for a reason and it's because I hope that maybe I can offer some tips for those of you who have also experienced the joys of hard-to-find veins. This is what seems to work for me:

1) Hydrate - drink lots of water starting the day before your anticipated needle stick. When your dehydrated your veins can shrink down on you a bit and become more difficult to locate. This is fairly common advice.

2) Cut down on salt - Have you ever felt puffy after eating too much chinese food? Yes? Well part of that awesome feeling is due to water retention in your tissues from the excess sodium in that tasty lo mein. I find that making sure I stay away from anything salty helps my veins to be more visible.

3) Exercise - if you can, squeeze in a workout the day of your blood draw or IV placement. Exercise causes your blood vessels to dilate and helps to bring once hidden veins to pop up. I find that I stay rosy-cheeked for at least a few hours after exercise and my veins seem to stay up too.

4) Use heat to your advantage - ask for a hot pack to help further dilate veins once you get to the location of your stick. Doctors offices and labs usually have these on hand. I find that running my arm/ hand under very warm water works even better than using a hot pack.

5) Speak up - if you have tricky veins, say so! My aforementioned experience was primarily a result of me being stubborn. I've drawn blood before and I really don't find needle sticks too alarming, so I'm a pretty good sport about being poked and prodded. I know it can be nerve-wracking to draw blood. You don't want to hurt the patient, you don't want to look bad, etc... so I joke and laugh about my silly, reticent veins, try after try. That is, until I see a needle wiggling around so aggressively that it pokes back up through my skin. I didn't mind the pain so much as I minded the unnatural sight, which proceeded to immediately break me out into a cold sweat. However, this experience did result in the Santa Bruise - which made me feel pretty special:

 

 Can you spot Old St. Nick? Complete with white beard and hair? 

So moral of the story: unless you want a festive contusion, tell the nurse/ phlebotomist that you have difficult veins. This generally results in them calling over one of their eerily skilled colleagues who seem to have a sixth sense for finding blood, which means less bruising and pain for you. As long as you're not mean about it. As in don't yell about "only an attending being allowed to put your IV in" like a woman near me did. In that case, I can't guarantee anything...

This post is dedicated to my boyfriend. Who kindly put up with me as I gleefully plotted out locations where I could theoretically draw blood from his nice bouncy veins and simply accepted this as normal behavior.

Return of the... blogger

Hello again all. As you may have noticed, I have been a bit neglectful of my blog recently. I apologize for my absence and will now proceed to place the blame squarely on my eyes. Suffice it to say that they took a turn for the worse for a long while. Doctors were visited, medicines were changed, and my eyes began a month or so of completely inconsistent behavior before finally beginning to calm down to their current state (which is actually pretty darn good). What did I do during my good spells you ask? Well, Christmas cookies, Star Wars I-VI, and Lord of the Rings may also have had something to do with that... I'm going to claim that this was all both necessary and good for the healing process because 1) thumbprint cookies make me happy, 2) Han Solo and Gollum make me happy, and we all know that being happy releases stress, which reduces inflammation, which is good for people who have too much of it in their eyes.

IVIG treatments, which I started just last month, also seem to be good for the eyes. It became quite clear that my previous combination of treatments was not working after a complete regression occurred after my prednisone was stopped, and so I decided to try “intravenous immunoglobulin G,” which is not a drug in the usual sense really, but actually a type of antibody. The antibody is collected from healthy donors (blood donors), and, well, no one is really sure exactly why it works for some autoimmune diseases. I'll discuss the possible mechanisms in one of my next posts. I've only had one cycle of treatments so far but almost immediately after, my eyes started to improve. I'm hopeful that this means that this is the medicine that will finally tip the balance in my favor. The only real side effect I've noticed so far are some pretty nasty, nausea-inducing headaches – unpleasant yes, but in my opinion, much more favorable than uncontrollable ocular inflammation. So we'll see how things go! I'm writing to you from the infusion room as I receive my second round of IVIG so hopefully next week I'll have some progress to report. 

Until then, I'm mighty thankful for the magic of Advil.

How much is that cow in the window?

My eyes have been worse lately. So today I'm going to follow the time honored tradition of sticking my head in the sand... and focus on something else. As I am best distracted when outraged, I've decided to tell you all about this article I read the other day, regarding the impending expiration of Lipitor's patent: http://today.msnbc.msn.com/id/45182184/ns/business-us_business/#.TrrGKXLZeuI. I felt a little bit like vomiting after reading it, so I suggest you sample the article for yourself with a mental barf-bag prepared. I didn't really know much about Lipitor prior to this, besides the fact that it's a cholesterol drug, but apparently Lipitor was a huge money-maker for it's developer (Pfizer). What's disturbing is the fact that this entire article reads kind of like a eulogy for some sort of mythological creature - which I guess in this case is a cash cow.

Rather than commenting on how “unleashing a wave of generics,” as they put it, might actually be a really good thing for all the people out there who have to pay for this medicine, the article only laments about the end of Lipitor's “fabled run,” and eagerly posits which new drugs could make as much money. Could it be Humira or Remicade? Drugs that are commonly used to treat rheumatoid arthritis? Or maybe it could be... an Alzheimer's drug! So many people are going to get Alzheimer's as the baby boomers age!

Does anyone else see anything wrong with this picture?

It disturbs me enough that pharmaceutical companies view patient populations as just money-making potential, waiting to be tapped. But to see journalists, who make no money off of drug sales, doing it as well is just downright frightening. Has viewing the medical/pharmaceutical industry as a profit machine become so pervasive in our society that no one will blink twice at considering a diabetes drug for how much money it will make rather than for how many lives it will improve or save? I guess the answer is yes. Obviously the authors of this article would be considered “business journalists” but it's a little bit disturbing if you can just throw the word “business” into your work title and it becomes immediately justifiable for you not to care about other human beings.

As far as Pfizer is concerned, now that their patent is up, they have apparently cut a deal with a generics manufacturer to withhold the sales of the generic version of Lipitor in the US. Just so they can squeeze every last penny out of US patients. You can read about this here: http://www.bloomberg.com/news/2011-11-08/pfizer-ranbaxy-sued-by-pharmacies-alleging-lipitor-price-fixing.html. I feel like the reason why pharmaceuticals feel like they can get away with tricks like this is precisely because the attitude that they deserve to be making billions of dollars off of sick people is just accepted as the way things are. But it is not the way things should be.

So today's blog post is dedicated to your health. May you never need the next "blockbuster" drug that these pharmaceuticals are developing, for they will certainly ask you to pay dearly for it. And then you'll have the pleasure of reading articles, such as the first one, celebrating the huge profits made off of your suffering and hard-earned money.

Ninth Circle, Antenora

I'm a little bit in love with Dr. Foster right now. I just had an excellent visit with him in Boston yesterday and I am so excited to be making progress! I hadn't seen Dr. Foster since starting my infusions and steroids so I really was anxious to hear what he thought about how I was doing.

Last time I was in for a visit, Dr. Foster was the picture of frustration. I was not responding to treatment and in fact, my eyes had gotten drastically worse. We tried giving me an emergency IV of steroids (to quickly calm down the inflammation) but it ended up not doing anything. It's pretty scary seeing your doctor bury his face in his hands after looking at you. You can't help but think that you must be the worst case he's ever seen or something. It didn't help that giant pictures of my tomato-red and generally horrible looking eyeballs were floating around on the huge computer monitor over Dr. Foster's shoulder as he did this. A reminder of how completely abnormal and well, diseased, my eyes looked. I promptly burst into tears.

The funny thing is, I knew exactly what Dr. Foster was going to say. I knew I was worse. I knew I would have to start taking prednisone daily, along with probably either methotrexate or cyclophosphamide (different immunosuppressants, since my current one wasn't working). I knew my eyes were very very inflamed. I guess it was just kind of unsettling to see my doctor look so upset about my particular case. I already had a rare disease, I didn't want to be further sorted into the “tough case” subset and unfortunately, that's exactly where I was.

But yesterday, Dr. Foster could not have looked more different. He was positively gleeful after looking me over. He declared that I was doing much better and responding so well after only a few months of treatment that even he was excited. I wanted to hug him, jump around the room, and possibly climb up on the exam chair and do a little dance in celebration. Luckily, I remembered social norms and settled for just smiling 'till my face hurt. Tough case to success story? I liked the sound of that. I flew out of Boston in a state of joy-induced delirium.

Science aside: Ever since this appointment, I have been having little fantasy-visions of my B cells getting chased down and destroyed while I stand by watching happily. One of the immunosuppressant medications I take is called rituximab. Rituximab goes after a protein called CD-20 and it is basically supposed to attack my B cells. B cells are cells of the immune system that are involved in making antibodies, among other things. These cells are supposed to be destroyed, fixed, or otherwise incapacitated if they act abnormal towards your own body. Since I am starting to get better with the addition of rituximab, this seems to suggest that something went wrong with this process and I have abnormal B cells running around, wreaking havoc. Of course, the immune system is really complicated and I am not a doctor and there is more to the story of my disease than just renegade B cells (you can read more about the “double hit hypothesis” here: http://www.oculist.net/downaton502/prof/ebook/duanes/pages/v5/v5c027.html). But for now, I'm going to imagine that hunting the little traitors down is the key to making me better and continue rooting for their destruction. Had they had souls, I'm sure Dante would have placed them in the second ring of the ninth circle of the Inferno - reserved for traitors to country. (My body = homeland for these guys therefore, to Antenora they go.)

But back to reality. Other good news from my Boston visit includes being given the green light to continue with my steroid taper. I've been dropping 5 mg each week and so I will officially be prednisone-free by the first week of December! 

Oh pemphigoid, I told you I'd kick your butt. Just you wait.

This post is dedicated to Dante Aligheri. Without whom I would not have known where exactly in the Inferno to place my misbehaving B cells so that divine justice could be properly enacted. I like to call this method of cheering myself up "Dante-vengeance."

Comic Relief

So the other day I realized that one of my medications was kind of humorously named. This is a picture of the prescription in question.

Note the name in bold: FML. For those of you unaware of the meaning of the abbreviation “FML,” it is commonly used to stand for “F--- my life.” In fact, there is an entire website dedicated to this usage (www.fmylife.com). Anyway, I just think it's kind of hilarious that I've been instructed to apply FML to both eyes, three times daily... It makes me smile whenever I use it.

Despite my use of pessimistically-named medications, life has actually been pretty good as of late. I just finished my last weekly chemotherapy treatment and according to my current protocol, I will only be receiving treatments once a month from now on! This is especially good news for logistical reasons; I am literally running out of veins to be used for infusions. We've used veins in my hands, my forearms, the crook of my elbow, my wrists... I need some time to heal up! Especially since the steroids I take diminish my wound-healing capabilities and cause me to bruise easily. As a result, all my needle sticks have left me with a patchwork of bruises on my arms. I look like someone let a five-year old tattoo me with splotches of blue, purple, and red. I personally think this is kind of funny, and I proudly show off my bruises as badges of honor. My boyfriend, however, thinks this is less funny, as I suppose it could also look like he beats me with a stick on the arms or something. In any case, it will be nice to give my arms some time to recover. It was getting difficult for the nurses to see behind all the black and blue.

Besides making me extra-fragile, I believe prednisone is also giving me food-related nightmares. Not the “oh my God a giant cheeseburger is chasing me” kind, but the “I just ate a carton of ice cream and now I have steroid-induced diabetes” kind. Maybe I should dress up as an overworked insulin molecule for Halloween! Get it? The insulin is “stressed” because it can't keep up with skyrocketing blood glucose levels? Well I certainly think it's frightening.

This post is dedicated to nerds. Viva la science!