Last year, I heard a lecture where a very intriguing concept was introduced to me for the first time: The concept was that those of us with Graves’ Disease must overcome a grieving process once diagnosed and treated.  This grieving process is for the loss of a person – the person the patient used to be.  A mother quickly spoke up about her child, diagnosed at a young age with Graves’ Disease.  She said, “What about the children and young adults who don’t have this sense of identity formed before the onset of the disease?”  And then there was some back and forth dialogue about how to deal with this situation. 

The whole conversation really struck me; I didn’t agree with any of it.  To me, character and identity is something that is malleable - not in the sense that it is easily influenced, but in the sense that as long as a person is experiencing growth, some part of his or her character and identity will inevitably change. 

In fact, I would go as far to say that – although my life would have been infinitely less complicated without it – I welcome Graves’ as a part of my identity.  When I was in school, I took a class on entrepreneurial business. Because I was a classic symptomatic Graves’ patient at that time, I don’t really remember all that much, but there was one thing I do remember; “fail fast”.  Fail fast because by failing, you learn.  Fail fast, learn fast.  And now, as I look back on my life since the onset of my symptoms - the diagnosis, the ongoing treatments, the surgeries, the disappointments, the small victories, life events – I can’t help but to think - holy $%@! - I have learned more about myself in one year than I thought I ever would in my entire lifetime.

And after I think about the opportunities that my diagnosis and trials have taught me – and even though this game is typically something that I normally strictly prohibit myself from playing – I think about where I would be if I were living a “normal life”.  Since stress is a trigger for Graves’, I suppose doppelganger Michaela would have chosen a different major.  She probably would have chosen one of the schools that actually offered a scholarship.  Her biggest decisions of the week would probably be homework, maintaining relationships with her colleagues, and “normal concerns” rather than “is this food going to influence my TSI?” or managing health care bills and lab results and brain changes.  But, would doppelganger Michaela have ridden her bike more than 3000 to benefit a non-profit and impacted that community in some way?  Nope.  Would doppelganger Michaela have the same mental toughness and emotional strength I possess now [on some days]?  Probably not.  You get the picture…

The moral of the story is that Graves’ Disease has sculpted my character – I believe – for the better, and I wouldn’t change a thing if I had some time warp or magic spell.  Although, changing a lottery ticket to future winning numbers wouldn’t be bad.  I don’t think my situation is isolated, either: The people I have met that have Graves’ disease, Hashimoto’s disease, thyroid cancer, Lupus, rheumatoid arthritis, MS… – and let’s not forget their friends and family too - they are all some of the strongest and admirable people I have met. 

I know this post is a few days belated for those of you that make new year’s resolutions, but those of you who have something going on that is less than ideal, I hereby challenge you to stop separating yourself from that situation and treating it as an enemy.  Life is too short to have to live like that.  In 2013, let’s treat these situations for what they are; they are part of our identity.

Happy New Year!

brebuskey asked: I just stumbled onto your blog while doing some research. I had Graves Disease and am still suffering from the damage that was caused to my eyes. I was first diagnosed about 10 years ago and had it pretty badly for about 3 years till I got pregnant with my daughter, my pregnancy caused the Graves to go into remission. We're starting to discuss weather I should do something about my eyes and the discomfort I have from them. Was the surgery worth it? I really enjoyed reading your story, thank you!

Glad to hear you are in remission and congratulations on the new addition to the family! In my case, the doctors were able to get both of my eyes to recede by 5 mill, which is pretty typical… I am happy with the results and think it was definitely worth the trouble. Feel free to look me up on Facebook and I can give you my contact info if you’d like to chat some more!

All the best in the New Year,
Michaela Cui

After my lovely endocrinologist decided to return from his/her 3-week vacation, I finally got what I had been waiting for:  My TSI.  The measurement of how sick I am.  The measurement that tells me whether or not I can expect my eyes to randomly pop out or become disoriented.  The measurement that tells patients with a thyroid how much of hell’s wrath will be released upon that patient’s endocrine system.  It tells me how badly my joints, muscles, and ligaments will hurt, how much energy I will have, and how many times I can get into a disagreement without wanting to turn green, burst into a shape one hundred times my original size, tear off my clothes, and smash people like ants into the sidewalk.

Too much?

Regardless.  He decided to give me that god forsaken number, and – compared to a normal measurement of under 125 – it was 399.  And just like that, s/ he said, “So we will continue to monitor your eye symptoms, OK? Bye – “ to which I cut him short and said, “Well I’m having a lot of other symptoms, what about those?” to which s/he said, “You talk to your primary care physician, OK? Bye.”

Clearly I need a new endocrinologist, and at this point, bouncing from endocrinologist to endocrinologist is just routine and not a big deal anymore.  So what else do I need?

I called my parents.  I hate to be the bearer of bad news, but they are fantastic at doing the dirty research for me and coming up with these nicely paraphrased e-mails with “What Michaela needs to know about XYZ” as the subject line.

And then the question comes up – the question that is so familiar to any patient and their families – and so disappointing: “High TSI again?!  What can we do?  What is the endocrinologist going to do to help you?”  And then the even more familiar, and infinitely more disappointing answer: “Nothing.  Until there is a cure for this or any other autoimmune disease, nothing.”

So we talked a bit.  We talked about what I need.  There are the basic needs – food, shelter, family – and then there are the needs that facilitate happiness – jumping out of planes, climbing, working out, yoga.  Most importantly, are the needs, the must-have’s, that relate directly to my own character.  I go back to my Tae Kwon Do days to explain this one:  Every practice, we would all line up facing the Korean flag and our instructor, and yell in response to some question that I don’t quite recall, “Perseverance, self-control, indomitable spirit, Sir!” At the time, I was probably nine or ten years old.  I remember having to write a paper about the meaning of each of those words, and I remember thinking, “Wow, these are kind of obvious.”  But I wrote about it anyways like a good little student.  Looking back, I can’t imagine where I would be without these three things.  These are what we – as patients, family, friends – need to have on a daily basis with dealing with the unwanted burdens of not only sickness, but everything we do in life.

But contrary to my nine year old self’s observation, perseverance, self-control, and indomitable spirit aren’t all that obvious.  It is easy to give up.  It is easy for me to sit here and complain about how I don’t have the financial backing, don’t have the emotional strength, or how I might not even be eligible for a second orbital decompression if my eyesight was again threatened.  I could throw in the towel, I could cry and stamp my feet.  So maybe I do that anyways.  But I don’t do it – I can’t do it – to the extent that my self-pity is going to become a distraction from getting myself the things I need to keep a roof over my head, keep food on the table, and prevent myself from being able to do the things that make life worth living.

Perseverance, self-control, indomitable spirit.  I probably got those wrong and some smart-ass I took Tae Kwon Do with is going to look me up on Facebook and correct my mistake.  But I digress.  The power of the combination of those attributes cannot be underestimated.

I can’t help but to think of how fortunate I am that frustrating news like this comes right before the Graves’ Disease and Thyroid Foundation’s annual conference at the end of this week.  There will be fantastic endocrinologists, my team of eye care specialists from the Shiley Eye Center, Kellogg Eye Center, researchers, the list goes on. 

At last year’s conference, I remember hearing from one of the presenters, “there is a light at the end.”  I believe them; I am much better off than I was a year ago.  But being rewarded with that light isn’t something that is going to come with the magical touch of a surgeon’s knife and a few pills every day.  Just like anything else desirable in life, we’ve got to arm ourselves with the right ammunition, and fight for that gift.

People like to be perceived as strong: When we do cry, we cry Chuck Norris style shooting round after round of bullets from our machine gun eye sockets. What enables us to keep up with this show? We have a select few - whether they be family, friends, counselors - that see the real tears, and we go back to those few when we can’t be Chuck Norris. Those people are the support structure that keeps us tall.

Over the last few months, I have ended my employment with one company, had a surgery, hiked half dome and climbed six pitches of trad in Yosemite Valley a week later, got my skydiving license, moved to Texas, started a new job, moved to San Diego, developed double vision, moved to Santa Clara, flew to LA every other weekend, and established care with all new doctors (eye specialist, endocrinologist, primary care) in Santa Clara. “Establishing care” can be defined by the following story/script/dialog:

Phone call 1 (for the sake of the length of this blog we’ll just say it was call number 1).

Endocrinologist in LA

Me: Hello, I’d like to talk to Dr. Endocrinologist about getting a referral to Dr. New Endo.

Desk: Ok, I will send Dr. Endocrinologist a message.

Me: In the past, sending a message hasn’t been effective in getting a response from Dr. Endocrinologist. What else can I do?

Desk: I will send Dr. Endocrinologist an urgent message.

Knowing I would not get a response from Dr. Endocrinologist, I had my primary care physician in New Hampshire, who I have not seen in years, send in a referral to Dr. New Endo. My doctor in New Hampshire - in case s/he is reading this - rocks.

Phone call 2

Endocrinologist in LA

Me: Hi, I am a patient of Dr. Endocrinologist, and the lab slip s/he gave me - which is required to get my prescription for Synthroid - is only valid at your specific location. I just relocated to Santa Clara and need a lab slip good for any lab.

Desk: I will send Dr. Endocrinologist a message.

Me: I have less than ten days’ worth of Synthroid left, which is not enough to get me to my first appointment with Dr. New Endo. Without Synthroid, I will eventually decline into a comatose state and die.

Desk: … I can send Dr. Endocrinologist an urgent message?

Phone call 3

Endocrinologist in San Francisco

Me: Hi, I am a new patient with Dr. New Endo and don’t have enough Synthroid to get me to my first appointment with him. Can I move my appointment ahead a few weeks?

Desk: Dr. New Endo doesn’t have any room for new patients until your current appointment time.

Me: I am having a lot of symptoms, if there are any cancellations, can I be notified?

Desk: If you are having symptoms, you need to see your primary care physician.

Long story short: I vented to my boyfriend who listened patiently like always and promised me a hug when I flew in that weekend, and my mom offered to help out by finding me a primary care physician, because apparently I don’t have enough to keep track of. I flew to LA early and busted into Dr. Endocrinologist’s office threatening complaints to the medical board and got enough Synthroid to get me to my first appointment with Dr. New Endo.

Oh, and if I ever hear the words “I will send an urgent message to Dr. X” again, I will probably punch the person who said it.

The point of this story is that with illnesses like Graves’ Disease, support structure is key. I’m tired after a day of work and the last thing I want to do is the logistics of getting records transferred and prescriptions filled. Things would be completely different for me if my mom were in my kitchen preparing my lunches for work and making dinner for when I got home and driving me around from place to place so I didn’t have to worry about hitting someone’s bumper on account of no depth perception because of my eye patch for double vision (which may or may not have happened today). It would be so completely different if I could see my boyfriend and not have to wait until Friday to get that hug that gives me energy to do something other than lay on the couch. The thing I have learned after traveling so much this year is that I need someone - someone who passes the tear test - to be physicially close to me, especially during the hard times.

What is the tear test? The tear test - for me - tells me two different things: Who am I comfortable to be at my worst around, and who is comfortable being around me at my worst? The people that I consistently work through problems with - whether they are my own problems or theirs - have seen me cry. I don’t mean a little tear running down the cheek; I mean full on, oh-my-god-did-someone-just-die, eyes puffy the next day, blacked out Graves’ rage meltdown. I don’t have many people that pass the tear test, but that is what makes them so important in my life.

If I’ve learned one lesson over the last year, it is the importance of the loved ones in my life. You can have a career that pays you in pounds of gold, it doesn’t mean a thing if you have no one to share it with. It’s a redundant and overused expression, and I could really use some cash to pay off my student loans [and accumulating skydiving expenses], but there’s something to be said about the impact of keeping cool people around for the long term. And in mostly because, in my case, it will take me years to pay them back for the amount of energy they’ve spent on me over the last six months!

On the note of family and loved ones, my cousin, a lupus patient, and her mother are spear-heading a team formation for the LA Walk for Lupus…They are some of the strongest women I know… So support them if you can :)

Elias, Keating, and David will depart the Christopher Columbus Waterfront Park tomorrow at 9:30am EST to begin their 4,000 mile bicycle ride to San Francisco!  Elias took on the challenge of the 2012 bike ride in honor of his sister, Molly, a Graves’ Disease patient.

As a member of the 2011 team, I cannot thank everyone enough who came together to help make this year’s ride happen.  Seeing the ride evolve has been astounding, and more than I could have hoped for at this time last year!  For me, the bike ride was a huge milestone of my life - something that really shaped me as a person - and I hope that Elias, his team, and those following the ride are able to share the same experience!

Follow the riders real time by clicking the map on the home page of www.GreaterThanGraves.com, and of course, we are always seeking donations, PR, lodging, and warm meals and showers for those smelly riders!

Wishing the team a safe, fun, and incredible adventure,

Michaela

Your help is needed for the 2012 Greater Than Graves’ bike ride!  We are seeking volunteers to drive the support vehicle and PR help!  Please contact us through the website if you or someone you know is interested!

One would think that with the 2012 Greater Than Graves’ bike ride less than a month away, I’d be posting blogs like a madwoman.  Before I come up with a million excuses as to why I have been neglecting my blogging duties, let me tell you a story:

Three weeks ago I had a major decision to make; a decision that will remain confidential until further notice.  I was balancing blood tests, trying to start a support group through GDATF, driving to doctors appointments in San Diego, planning another eye surgery, adjusting to a new job, dealing with the dragging fatigue of having no thyroid, and to top it all off, some really cool guy showed up at my doorstep.  And I’d like him to stick around regardless of my crazy life style.  Anyways, my car needed a major surgery too, so on this particular day I was riding my bike around the town.  On my way from work to the climbing gym for lunch break, I got hit by a car. In shock that I was fine and didn’t kill my recently manipulated-from-surgery skull because of my lack of common sense (helmet), and contrary to my common saying “please hit me so I can sue and pay off my college loans”, I shook the driver’s hand, and walked my bike to the climbing gym where I climbed anyways.  I sent a note to my boss that went something like, “I got hit by a car - my bike and I are fine - and my own car isn’t ready to be picked up yet, so I won’t be making the staff meeting this afternoon.”  And he said, “Your car is broken, you got hit by a car, and you’re worried about a staff meeting?”  If only he knew the whole story!

Days like this have been a common theme for me over the last few months.  So - because I don’t have enough debt - I decided to start skydiving.  Jumping out of a plane and hurtling towards the ground puts your problems into perspective.  I even forget about student loans.  I hear reading and drawing and singing and weird stuff like that helps too if jumping out of planes doesn’t do it for you.

Through the Foundation, I have met many people such as myself dealing with the tumultuous transitions of adolescence and the grief of being diagnosed with an autoimmune disorder.  It’s one thing to be older, have a life and routine established, a support system in place.  But when you’re moving around the country and trying to find your way in the world, it is a challenge to retain a sense of dignity sometimes.  I’ve heard people as young as I am say, “I’m so tired all the time, and so broken… I will never find someone that can understand what I am going through.”  After all, thyroid patients look generally healthy.  But being alone is so far from the truth.  One of these days - because I don’t have enough ambitions - I’m hoping to adopt yet another project; a place us young ‘uns can go to share experiences and build each other up a bit.  Julie - if you are reading this - I PROMISE I will call you back soon about the idea!  In the mean time, I’ve found a cool blog with a lot of support: dearthyroid.org.  Check them out, they have rants from all kinds of people with all kinds of thyroid problems… There’s nothing like the relief of knowing that you’re not crazy.

Anyways, the main focus of this post was supposed to be the latest before and after picture from my orbital decompression.  I couldn’t be happier with the results!  And I still have one more surgery (lid lowering) left so I’ll look even more like myself when that’s over!  For those of you without Graves’, imagine that every time you look in the mirror, you see a different person.  You don’t see yourself.  It doesn’t matter how you eat or dress; you look different, and you don’t like it.  Imagine dealing with that every day for years.  Can you imagine how easy it would be to just give up and say, “well I have no control over the problem, why bother trying?”  Can you imagine how it feels to know that you used to look like X but now you look like Y and people see you for something you’re not?  Can you imagine the impact it has on your self esteem and productivity?  Imagine dealing with this in the prime of your youth, when you are supposed to be starting off your independent life.  Now imagine that someone waved a magic wand (or in this case, sliced open your face and removed some bone) and made you look like yourself again.  You see yourself in the mirror for the first time.  This is how the before and after picture from UCSD’s Thyroid Clinic and the Shiley Eye Center made me feel:

It’s looking like the lid lowering procedure will be in early June… But the exact date will be posted once I know.  I will also unveil my confidential life decision.  This blog is turning into a mini series.

Because of Greater Than Graves’, I have met so many great people and consequently learned a lot about myself.  I can’t thank everyone enough for your encouraging notes through the website, your phone calls, and most importantly, your support.  The 2012 ride starts May 26th, and if my impromptu ride in 2011 was able to make this kind of impact, I can only imagine what will come of this year’s ride.  So get psyched!  Please spread the word and give us a holler if you have any interest in helping out or riding!  

One month following surgery, I think I might be able to pass a field sobriety test if I ever got pulled over.  I’d rather not find out, though.

My dad had some concerns about me driving down to San Diego for my last appointment, and voiced this concern at about 8:00 PST Sunday the 19th.  Keep in mind, my dad flies a lot for his job and has executive plus silver whatever status with the airlines he chooses to fly, so flying last minute typically isn’t a problem for him. So around midnight Eastern time, I called and accepted his offer.  He booked a 7am flight out to California on the 20th, arrived mid-day California time, and drove me to San Diego on Tuesday the 21st.  I can only hope I inherited his ability to book flights like that.

The next week I bribed a friend to drive me down much to my parents’ relief.  In the last two weeks, there has been some improvement in the size of the dry spot and dilation in my right eye, but it has still been a slow recovery.  The doctor put me on some steroid drops for the messed up eye, and gave me “the look” when I inquired yet again about acceptable levels of activities.  After his stink-eye look was over, he said with a sigh, “What kind of activities are we talking?”  ”Oh, some run - uh, jogging, spinning…” followed by a quick and quiet murmur that sounded something like “climbing.”  The doctor quickly responded with another sigh, “Fine if you stay within 60% of your max.” The resident listening in chimed in, “walking’s good too” and then the doctor - much to my dismay - added, “and no climbing yet.”  So I bring friends climbing so I can at least practice building anchors.  Anyways, I have another follow-up in two weeks; maybe by then I’ll be good to go!

I think it’s important to remind those of you with Graves’ reading this that my experience is very unique, and in more typical circumstances, you’d be back in action within a month!  That being said, it is a major surgery with possible complications, and a temporarily (or even permanently for that matter) dilated eye - whether it be nerve, drug, or muscle related - is a really small price to pay in the scheme of, well, life.

To deal with my temporary inability to perform my required work duties, I filed for a medical leave of absence and short term disability through the state of California.  It is a long process to get cleared though, so my credit card will most likely cry for about a month.  To make it even easier for me to file the paperwork, they sent me two packets of fine print forms that said, “Please return within five business days”.  Way to think that one through when my file says I’m filing for “temporary blindness”.  Minor details.

As I recover I can’t help but feel incredibly happy that there are those from the Foundation, Elias and his team, and the doctors at the University of Michigan carrying on the Greater Than Graves’ vision for 2012.  The start of their journey is just around the corner with an anticipated start at the end of May, so be sure to check out the 2012 blog for their rally!

Michaela

On Day 5 following my OD, I decided to bring my mom to see Santa Monica. She was very excited to take a picture by the sign that said “Santa Monica Blvd”. This turned out to be a slightly less than ideal decision because the wind really did a number on my eyes. One tip for those suffering from dry eyes after the surgery is to get a humidifier, especially if you live in a place where “But at least it’s a dry heat” is a common expression.

I had another follow-up appointment the next day, where it was confirmed that my left eye still had a ginormous blister that prevented my eye from closing completely, and my right eye still had a small dry spot (although getting smaller) and was still very dilated (also getting more contracted). My mom flew back to New Hampshire to take care of our dog’s litter of 9 puppies a few days later, and then I was able to drive myself down to San Diego for another follow up appointment by Day 12. Good decision? Questionable. Michaela alive? Check. I ended up taping a piece of paper with a hole in it to the right lens of my glasses to compensate for my dilated eye. I ended up using this as a method to allow me to read at work.

I started going back into work incrementally by the time my mom left, but because of the dry spot and dilated eye, even two weeks out it is still hard to read computer screens which makes my job as an engineer very difficult! It’s also hard to find the things my mom left here so I can send them back to her in New Hampshire.  Just to be clear, my circumstances are different from a typical OD since I was given drugs to make my heart rate faster while on the operating table after I had developed a dry spot on one of my eyes.  So, my thirsty eye absorbed a bunch of the drugs, and since the dry spot hasn’t healed yet, it doesn’t want to give up any of the drugs, and my eye remains dilated.  As long as your heart rate doesn’t drop to 30 during surgery, you won’t have this problem.  Anyways, here’s a pic from Day 14… basically just looks like i got in a fight.  Which, for the record, I won.

One thing a lot of people seem to be worried about is the amount of numbness on their faces following the surgery.  I have a few places that are numb.  First is my right nostril, but that numbness went away by day 14.  Second is the left half of my skull, but I think that sensation is coming back because it feels like someone in the OR accidentally dropped a heavy object on it.  Or I got in a cat fight with a hair-puller.  The left-most quarter of my forehead is also numb, but also sore so that gives me reason to believe sensation is returning! Just below my left eye is also numb, but it itches on occasion so I take that as a good sign.  Considering just above the incision for my thyroidectomy is still numb, I was prepared for what might result of the O.D. and I’m not too alarmed.  Moral of the numbness story… If you want to get your ear or eyebrow pierced, wait until a few days after your orbital decompression and the person piercing you will think you’re a superhero for not feeling a thing.

I sneezed for the first time today and it felt fine.  It actually felt kind of good because I haven’t done it in two weeks.

So numbness isn’t a big deal, but my chief complaint two weeks out is that I can’t work out.  Here’s the reality of the situation characterized by a dialogue I once had with a friend:

Friend: So what are your hobbies?
Me: Oh, anything outdoors really… Hiking, biking, climbing, running.  I guess I like adrenaline.
Friend: No, like, what do you do in your down time?
Me: .. Um.. [trying] I like to do yoga classes too?
Friend: No, like… [sigh] I like to read.  What does Michaela like to do at home?
Me: Michaela plans exciting trips so she can be outside?

So basically, my friend had a point because I have NO IDEA what to do with myself right now.  I walk to work sometimes, but because I am on second shift it doesn’t always work out if I can’t get a ride home at 10 or 11 at night.  So I signed up for an REI class to learn more about making bomber climbing anchors because “This course does not focus on climbing movement”.  One point (and more dividends) for me!

The plus side of being debilitated is that I am more willing to do weird things with friends.  For example, I lounged around on my friend Carlo’s couch while he and two other guys put together a bookcase, and I even put together a nightstand.  My favorite quote from that day, “Hey, you know how to use tools!”  Which is funny because it was a Wal Mart nightstand. Oh, SoCal.  I also spend more time catching up with people rather than, “Hey want to go for a hike?” “I can’t.” “Lame, talk to you later.”

One thing I get a kick out of after a surgery is the amount of quirky health information I receive on a daily basis.  It’s inspiring to hear about how Suzie stopped shaving only her left armpit and cured her headaches, but I believe I am making the best decisions for me, and it’s frustrating when people insinuate that I am not.  I work out, I only eat food that is as close to the source as I can get it (except when Mommy sleeps over and cooks for me :P), I think I’m at least mildly mentally stable at this point.  But generally speaking, these people the nicest people ever, so I have to suffocate my frustration and paste a twitching smile on my numb face and say please and thank you.  And then I get a sense of frustration from the guilt I feel about being frustrated with them for offering to help me.  It’s a big fat circle of feelings.

On the thyroid front, I’m excited to see that my levels are normalizing and I’m losing the “puffiness” that I got from the methimazole.  I’ve been doing happy dances every time I put on clothes that are getting baggy.  And then I text someone.  If I had a twitter account I’d probably tweet something.  One thing [I think] methimazole-related that hasn’t subsided yet is my swollen tongue.  It hangs out when I sleep and is really attractive.  On second inspection, you can see in both of the pictures above that my tongue sticks out a little bit when I smile.  I think the best way to deal with this is just to tell everyone that it makes me a really good kisser.  Or something.  …Maybe I need to work on that explanation.

All in all, I’m very happy with how things are looking, and am excited to have reading capabilities again so I can write some awesome letters asking for money for GTG 2012. And to work out.  The Greater Than Graves’ website got a make over in preparation for the 2012 ride to take place in May, which is also awesome! Submit a comment at the website (www.GreaterThanGraves.com) if you have any interest in helping in any way what so ever!

That’s all for now, but look for another update after my next follow-up appointment Feb. 21st!

Michaela

 

So here it is, the fourth day following my orbital decompression on February 1st, and here I am sitting here with my face probably way too close to the computer screen for my own health half blindly writing in my Tumblr blog as my mom prepares food for the big game.  At least I’m no longer sustaining that warm, fuzzy Vicodin high that I’ve had continuously for the first few days!

On the day of surgery, we did not go to the zoo.  I had no food or water after dinnertime on Tuesday (the day before surgery) and by 1:00pm on Wednesday, I was the most pale, grouchy, hungry, and dehydrated version of Michaela anyone could ever imagine.  But my mom and I took a nie detour to check out Torrey Pines State Park and then my mom had a nice meal at Whole Foods while I took a nap in the car.

By 2:00pm we made our way to inpatient surgery check-in and waited for the operating room to become available:

3:00pm: They got a baby IV in my arm by some miracle! Usually I chug water, do push-ups, run laps, and praise the Gods of the Veins  before I have to get my blood drawn

5:00pm: Stomach says, “Well F that” and eats itself.

6:00pm:  Anesthesiologist says in response to my remark about being prone to nausea after surgery, “We’ll put you on a drip of the Michael Jackson stuff.  You’ll have a very positive outlook on life for a while since it stores in your muscles for a few days.”  Score.

7:00pm:  Doctor’s fellow says, “You’re going to feel like you got hit by a bus.”  I contemplate what it feels like to get hit by a bus.  I’ve never been hit by a bus.  Positive outlook on life is gone.

7:30pm: Anesthesiologist assures me that if you get hit by a bus more than your face will hurt and proceeds to inject what he calls “G and T” into my IV. Good feelings return, and I don’t really remember much after that.  But by 10:00pm, this is what I looked like:

I honestly don’t remember a lot about the twelve hours or so following surgery… I guess I wanted pain medicine and slept a lot.  We also ran into another problem:  Usually I warn the nurses before a surgery that I am an active person and my pulse typically drops very low while under anesthesia.  I forgot. So this is the phone call my poor anxious mother received when she was finally notified I was in recovery:

Nurse:[Something about the surgery going well] …But we had a little problem…

Mom: Oh?

Nurse: We had to put her in the cardiac unit because her pulse dropped to 30 beats per minute in the recovery room.

So I got a private room with a nice supply of oxygen flowing straight up my nose from a tube even though my blood was fully oxidized at 100%.  I guess this is considered the “step down” from ICU, which for a mom is kind of a scary term.  But she used to be a nurse and assured the recovery room staff that I’m just a “very active girl”.

Needless to say, because I was in that room, the hospital staff was very excited to get me out of there the next day to get people who actually needed it in.  I was hoping I could stay for more drugs that would give me a positive outlook on life, but they did not share the same feelings.

So like any girl who was denied something or went through a traumatic experience, I left the hospital and wanted some Fro Yo.  And that’s exactly what we did:

I couldn’t see what the scene was exactly, but I guess there were a lot of small children running around in the frozen yogurt shop.  And I guess I had quite a bit of blood running down my face.  And I guess they were frightened.  I am known to have this effect on children on a normal day, so I wasn’t too alarmed by my mom’s observations regarding the children of the frozen yogurt shop.

Because of all of the discharge from my eye sockets, we kept the gauze on the first night.  The second night we went out for some Miso Soup at a local Japanese restaurant without the gauze:

I could open my eyes a little bit, but not enough to really get around without too much help from my mom.  I am very thankful to have had my ex-nurse mom around during these first few days, especially since I was pretty consistently doped up on Vicodin and there are LOTS of medicines to keep track of.  For example, there are steroids that you take multiple times a day, antibiotics four times daily, eye drops four times daily, yucky oozy gel stuff twice daily, and then keeping track of the last time you got high off Vicodin to make sure you’re not overdosing.  And then there’s my usual antihistamines and levothyroxine.

By the third day I could open my eyes in small intervals; enough to get a drink of water of whatever and then they definitely needed a rest.  As far as pain is concerned, I think this was the worst day.  All of the goodness from anesthesia stored in my muscles was gone (I think), the eyeball muscles are extremely sore and sensitive to movement, and it kind of feels like I was on the losing side of a fight with a miniature pony with very strong hindquarters. Here’s what my eyes looked like on day 3 if you don’t really know what that might be like:

 

We still went out to meet up with some family down in Orange Country since everyone was all in one spot for the weekend and it was a matter of convenience. My mom doesn’t get out this way too much, and it was also her birthday, so it was nice to see her family to celebrate such an auspicious day!  Her side of the family is also deeply involved with the non profit industry since they have a small son who was diagnosed with Cystinosis.  He is the sweetest kid (well, all their kids are!), and if you get the chance, check out their page at http://www.joshuasjourney.org/ .  Joshua always serves as a reminder to me that even if there are a few people in the world going through the exact scenario you are, everyone has their challenges and everyone can relate on some level.  Life is way too short to be absorbed by your own unique problems, and you’ve got to be ready to share and give to others whoever and whenever you can.

Speaking of doing good things for others, I was finally able to wash my hair on the third day, too.  I guess a lot of red washed out of my hair.  Apparently those “natural highlights” were just that… My own blood… [evil laugh].

By the fourth day (today, Feb. 5th), I was able to open my eyes and see well enough to do anything except operate heavy machinery, use sharp knives, or stare at a computer screen for more than five minutes… So this blog post has been a bit of a process. Here’s the pic of the day:

Last night we found that one of my pupils were very contracted and the other very dilated, so I did make a trip down to San Diego to double check with the fellow on staff for the weekend that I wasn’t going blind or brain dead.  After some bright lights we determined everything was fine.  I am generally sore in my face area, but I have downgraded to extra strength Tylenol, so no complaints there.  It’s definitely a slower recovery than I was expecting, but I certainly don’t feel like I was hit by a bus.  I will have to get back to work for Tuesday since I will be out of sick and vacation time tomorrow, and I expect that to be challenging since there are a lot of computer screens that need attending to there, but my coworkers have been understanding and hopefully cut me some slack!

I’m going to be done writing since my eyes are getting pretty angry at me and Madonna seems to be putting on a pretty good half time show… I might have to take a Vicodin after all… :P

Thanks everyone for your support and comments on FB and though the website!  I’ll keep updated as things change over the next few weeks!

Michaela