First post-surgery bummer

With nothing but positive comments from my friends, family, and other people who knew how bad my eyes were before my orbital decompression and even still before my eyelid lowering surgery, today was my first reality check that my eyes will never be exactly as they were before Graves'.

A guy at work, who rarely talks to anyone, said, "You always have this look of surprise. Like you're thinking, 'I didn't just see that, did I?'"

Little does he know, my heart just broke a little and it's more like, "I didn't just HEAR that, did I?"

Guess I need to consider that follow-up surgery after all...

Unless I got someone's else lab results...

I know. I'm horrible at posting. I promise to update everyone on my life and get better at posting regularly.

Short post. I'm confused. When I moved to Boston, I had trouble sleeping. I was in an unfamilar place, I was on a brand new schedule, and working long days. So I stopped taking the niacin regularly because when you can't sleep, you can't wait until you fall asleep to take it. And when you take it, and get the horrible flush, it makes it even harder to fall asleep.

So I assumed my cholesterol would skyrocket. I combated that with daily strenuous exercise and a really clean diet. I also walk a TON now during my commute.

When I met with my new primary care physician last month, I told her I had been really bad about taking the niacin. She was OK with it. She basically told me that while it has been shown to lower the numbers, it hasn't been proven to actually reduce risk factors for heart disease. So someone who takes niacin for high cholesterol may have good numbers, but still might have heart problems. She said we don't know enough, but that if my body wasn't adjusted to the flush after so many months on it, that I should stop. So I did.

And look what happened.

	2/11/2013	4/5/2013	5/22/2013	9/20/2013	Normal
HDL	72.5	69.4	72.9	66	45-65
LDL	202	219	175	151	0-130
Triglycerides	130	129	105	83	40-150
Total Cholesterol	301	315	269	234	135-200
Cholesterol to HDL ratio	4.1	4.5	3.6	1.5	3.5-5

Your Total Cholesterol of 234 is BORDERLINE
Your LDL of 66 is OPTIMAL
Your HDL of 151 is OPTIMAL
Your Triglyceride level of 85 is NORMAL

RATIOS:

Your Total Cholesterol/HDL ratio is: 1.55 - (preferably under 5.0, ideally under 3.5) IDEAL
Your HDL/LDL ratio is: 2.288 - (preferably over 0.3, ideally over 0.4) IDEAL
Your triglycerides/HDL ratio is: 0.563 - (preferably under 4, ideally under 2) IDEAL

On a related note, my thyroid levels are perfect. I haven't switched doses since...I don't know when. That's never happened! I've never forgotten how long it's been, because it's never been more than a few weeks!

Bad Makeup

It really does look like I'm wearing uneven, excessive purple eyeshadow and eyeliner. I went over to HR this morning to sign a bunch of crap that says today is my last day, and was sitting very close to one of the women. She didn't say anything about my eyes. I know she could see the purpleness. She probably assumes I'm being beaten and that's why I'm running off to Boston.

One Week Mark

Today marks two one-week milestones. It's been one week since my surgery. My eyes are exhausted and I'm guessing it's from my first full day of work since surgery, which was yesterday. Staring at the computer all day would make anyone's eyes tired, and I think my recovering eyes were just not quite ready for it.

Otherwise, I feel great. The stitches are dissolving and thus the incisions are healing, which means they're itchy. Almost burning sometimes. But it's a good sign.

Today is also one week from my first day in the office. Because I'll spend my first day as a Dana-Farber employee in a daylong orientation with all the other new employees (physicians, nurses, interns, etc.), my first day in my office with my new co-workers won't be until Tuesday.

See Ya, Surgeon!

Today is post-op day 6 and my eyes are feeling great. The bruising and swelling got worse around the 48-hour mark but has been improving since the weekend. I was able to throw Juls what I considered to be amazing bridal shower (huge post to come) that went off without a hitch on Saturday. Hiding behind sunglasses and a hat, no one had any idea how bruised I was except for her and her family.

I saw Dr. C this morning for my last appointment with him ever. As I'm moving to Boston this coming weekend, my insurance will no longer cover him. He was SO pleased with how my eyes look already. They are still very dark purple and swollen, but for the first time in more than two years, my eyelids are no longer retracted. I have been so overwhelmed with relief that I've been crying happy tears since my surgery - I finally look like my old self again.

The stitches are dissolvable and almost gone. The eyelids are almost perfectly even but the surgeon showed me massage techniques to bring the left lid down every so slightly to line up with the right. He gave me his cell phone number so I can text him photos of my eyes as they fully heal, and I am going to stop back in a few weeks to let him take official post-op photos once the swelling and bruising are gone.

I agreed be his poster child for thyroid eye disease treatment and repair. I wrote reviews on Google+, Yelp, HealthGrades, and his website since there seems to be so little out there about orbital decompression and eyelid repair. So much of what he and other oculofacial plastic surgeons do is cosmetic, and both of my surgeries were medically necessary, fully covered by insurance, but unheard of by almost all medical professionals I encountered along the way.

Eventually, I will need a cosmetic procedure to remove all the excess fat that Graves' deposited above between my eyes and eyebrows. And I'm quite sick of contact lenses, so I might consider LASIK down the road. But for now, I'm looking forward to have normal eyes with no more surgeries or appointments any time soon.

Not So Fast

After feeling like a million bucks for most of the day yesterday, my eyes reminded me that the trauma they endured on Tuesday was a bigger deal than I was giving them credit for. As I started getting more tired, my eyelids started hurting. It felt like a sinus headache in my eyebrows. I didn't want to, but I broke down and took a Percocet before bed. Fortunately, I slept like a baby again despite a lengthy afternoon nap.

This morning, I slept until almost 9. I woke up, iced my eyes a few times, made breakfast, and finally psyched myself up enough to go to Michaels. I had to get a few last-minute things for the shower. By the time I got home, I needed lunch and a Percocet...and fast.

I finished the last few shower projects high as a kite, including my big gift to Julia. Fortunately, my creativity can endure narcotic-induced silliness. I am getting so dang excited for Saturday - I just hope I feel a lot better than I did today.

Bilateral Repair of Upper Eyelid Retraction

Now there's a mouthful for ya. That's exactly what I had done at 11:30 a.m. yesterday. It was much easier than I expected and MUCH easier than my bilateral orbital decompression back in September.

Dad and I arrived at the hospital at 10 a.m. While in the waiting room, Dr. C (oculofacial surgeon) came out in his scrubs to say hi. He told me he was having a great day and feeling good about my surgery. That calmed my nerves.

Eventually, I was called back to my pre-op room. I was anxious and ready to cry, but before I knew it, I was being whisked into the OR. The surgery took one hour, and I had sedation with local anesthesia. My body doesn't tolerate general well (I get very sick) so this was great. I was asleep for the first half but the surgeon woke me up for the second half as I had to keep opening my eyes so he could make sure the eyelids were symmetrical. I felt pressure and could hear him cutting, but no pain. He is from Chicago so we discussed the Stanley Cup finals and my upcoming move to Boston while he was snipping away at my upper eyelid muscles. Before I knew it, surgery was over.

I spent about 90 minutes in recovery, and chugged four things of apple juice and downed three packets of graham crackers. I laid with ice on my eyes for a while because the right eyelid turned black almost immediately. I bruise easily so we knew this would happen. As soon as I could stand up and dress myself, they let me leave. As we were driving home, the novacaine was wearing off so I took a percocet and a half, which quickly took the edge off. I ate a LOT, dozed on and off, slept like a baby, and didn't need any pains meds past 7 last night.

Today, I woke up feeling great. I was slow to get moving but walked my dog, took a shower, washed my face, accidentally peeled the DermaBond off my right eyelid incision (but the incision is still intact, so I'm not worried), and even went into work for a few hours. I have an ointment for the incisions that I'm supposed to apply four times a day. I don't know if the stitches are dissolvable or not (they were for my OD) but I see the surgeon on Monday morning. He called last night to check up on me.

Right now, my eyelids look droopy but that's probably a combination of the swelling and the fatigue. I hope they look a little more natural in a few once when the swelling and bruising resolve. Honestly, the worst pain is the IV site in my left hand.

I'm just so relieved to know that I can drive (since I'm not taking painkillers) and throw Julia an awesome bridal shower on Saturday. I just can't lift anything but that's what Donny is for! I've invested in a big Fedora sunhat to A. hide the bruises and B. protect the incisions from the sun - I don't want ugly scars!

After working for a few hours, I was exhausted and took a three-hour nap. Upon waking, I wasn't very hungry but knew I needed to eat so I grilled myself a hot dog and some squash and zucchini. And I had my first glass of wine in 3+ weeks. Needless to say, I needed another nap afterward!

My plan tomorrow is to lay low, and maybe get my nails done if they're even open. The 4th really doesn't mean much to me. Last year, I spent it miserable with a massively swollen wrist from a kayaking injury. This year, I'll spend it less miserable but with much worse swelling. Juls invited me to the beach, but that's just not a good idea yet. I still tire easily, and the nurse warned me to stay out of the sun and heat as it will slow healing and aggravate the swelling. Saturday - the day of the shower - it's supposed to be 93 so I envision maybe a glass of two of sangria and LOTS of water.

Without further ado:

New Eyes, New Job, New City, New Life

Thanks to my best friend for the title above. I texted her that everything was happening so fast and she responded the way she always does - with positivity. Amen.

My surgeon was able to rearrange his schedule (i.e., postpone someone else's surgery) and fit me in on July 2. The surgery is - AGAIN DANG IT - an afternoon surgery, which means no food after midnight  until after the surgery. That's a long time without food or water. My surgery is at 12:45 p.m. but I have to be at the hospital at 11:15 a.m. Last surgery, I spent the morning baking four dozen pumpkin muffins so the family and I at least had breakfast for the next week. Unfortunately I was too sick to enjoy them before they went bad, but it kept me busy that morning instead of thinking about how hungry I was. You'd think it made my hunger worse but for me, baking isn't about eating. It's about the process.

So anyway, July 2 is perfect. It's a Tuesday. I can work in the morning. I'm told I can probably work the next day, but the president of the college is so awesome that she is letting us all go home at 1 p.m. on Wednesday, July 3. Obviously July 4 is a holiday, and since half of the employees are probably already planning to take Friday off, she's decided to close to college and let us have a nice long weekend. A four-and-a-half day weekend, to be exact. I was going to request Friday off since Saturday is the bridal shower, but now I don't have to.

Yes, I will be bruised and swollen for Julia's shower which is exactly what I was trying to avoid - we have almost no good pictures together from the last year - but it's an excuse to buy enormous Jackie O sunglasses instead of my usual fake Ray-Bans. And hopefully by then I won't need any more percocet and enjoy plenty of sangria.

*Update: I got this great response from a woman in my online Graves' support group.
Hi!  Congratulations on your new job!  In my experience, eyelid retraction repair recovery was a piece of cake compared to OD recovery.  I only had light sedation and local anesthetic during the procedure because they needed me to be able to sit up and open my eyes to help them gauge the correct height of the lids. 30 minutes after the procedure I was completely coherent and able to walk out of the hospital.  I had some mild pain that day, but by the next day was completely pain free and able to pretty much go about my normal routine-Of course with big dark glasses on when I left the house! If I remember correctly there was no bending below the waist or lifting anything heavy for the first week. I was using ice packs frequently and the majority of the swelling and bruising went away in 4 or 5 days. I would say it took a full 10 days for all of the bruising to diminish.  I think you will still be able to throw your friend a fabulous shower, you may just need a little extra make up and to wear glasses depending on the level of bruising you still have.I'm so glad you will be able to put TED behind you soon!  I'm sure everything will go great with your surgery!  Let us know.

Surgery #2 is a Go

It's just five days shy of the nine month mark since my bilateral orbital decompression and today I saw my surgeon to discuss the next step: lowering my upper eyelids. Most people with moderate to severe thyroid eye disease (mine was moderate) need one to three surgeries to correct the damage, which takes anywhere from one to two years to fully flare up and fully calm down. I got lucky in that mine only flared for a few months and I was able to have surgery #1 this past September. Had I woken up with double vision, it would've meant six months on disability, unable to drive or work until I was recovered enough for surgery #2 - strabismus surgery to correct the double vision. Praise cheez-its, I woke up with single vision and have no complications from surgery #1 aside from the numbness on my right cheek. That's where surgeon #1 (oculofacial surgeon/Dr. C) spent the bulk of the three-hour surgery digging around to create more room for my right eye. Aside from that, I feel great.

So today I was cleared for surgery #2 (or #3 for those unlucky ones who develop double vision) - eyelid lowering, or mullerectomy. Because my eyes bulged out so much for so long, my upper eyelids have permanently retracted. So although my eyeballs no longer bulge thanks to a successful surgery #1, my upper eyelids are stuck up there and so I always look surprised.

This surgery is not cosmetic, and there are no out-of-pocket costs to me. Except my deductible. Unfortunately, because my thyroid was so unstable this past year, I had to wait longer than expected for surgery #2 and my health insurance plan restarts July 1, meaning I will be on the hook for the first $1,000. My orbital decompression was in the $20,000 neighborhood and I paid not a dime since I met last year's deductible on exactly July 7 when I had a $5,000 MRI of my orbit (head/eye area) in preparation for surgery #1.

Here's the snafu: my last day of work is July 10. My current health insurance plan will be canceled at 11:59 p.m. that night. My new insurance won't pick up until my first day of work, July 15 and even when it does, it's only going to cover physicians out in the Boston area. My surgeon has a colleague he recommends out there, but Dr. C has been so great. I started seeing him in March 2012 and literally put my life in his hands back in September with this major surgery that could have left me cross-eyed or blind. I want him to perform surgery #2. He agrees.

So, his surgical coordinator is going to see if there's any way to fit me in between now and my last day on the books at my current job. I have plenty of sick time left (a week and and some change) so that's not an issue. I mean, I really don't want to miss much work since I only have another three weeks left but I have to do what's best for me.

The procedure and recovery will be much less invasive and involved than surgery #1 was, but Dr. C cautioned me that I will probably look just at bruised and battered due to my fair skin and ease of bruising. We even discussed my crazy Niacin reactions and he said it's totally normal for someone as fair as me to continue to have the sunburn-like reaction after two+ months on the drug.

There's a very good possibility I will show up to my first day of work in sunglasses, and not want to take them off. However, my first day is actually orientation and is for every new hospital employee, resident, intern, etc. So the physicians will probably love asking about my stitches and bruises. Tuesday is my actual first day of work, and I wasn't going to tell them anything about Graves' until I had to, and it's looking like I'm going to have to. A warning email the day before might be in order so they don't think I got mugged on the T on my way into the office. Or should I go with that story...?

Anyway, I'm really hoping I can schedule the surgery for my last week of work so I don't have to show up to the bridal shower I'm hosting with a swollen face and sunglasses even if it rains and we move inside. However, I have been waiting for surgery #2 for about eight-and-a-half months so whenever they can make time for me, I'll take it. As long as I'm able to get everything ready the days before and set up that morning, and can enjoy myself, I really don't care about being bruised and swollen.

In case the surgery is scheduled sooner, I'm started my surgery prep today, which basically just means eating healthy, exercising a little extra, and no ibuprofen. You're supposed to stop ibuprofen, aspirin, or any other blood thinners 10 days before surgery. I don't take the latter two, so I'm good. I decided last week I wasn't drinking this week because I had been having a glass or two every night with dinner and then sleeping like crap when normally I sleep like a baby. I'm sure new job stress/anxiety has more to do with it than anything, but I also wanted to save that $20 instead of spending it on wine, so alas I am wine-free this week and might as well continue until after the surgery.

By the way, Twiggy over at Quarterlife Ramblings had her eyelids lowered back in April and everything went swimmingly. I think she said it best when she said, "I no longer look like I've permanently seen a ghost."

Oh, and I totally said I was going to exercise extra starting today but I have been so dang tired lately (thanks Bruins) so it's bedtime. I'll start tomorrow.

Hello Stranger

So, I've been terrible about posting lately. I've been so busy that I honestly forgot I even had a blog for a little while.

Let's see, where shall we begin?

The most exciting news on the health front is that my thyroid has been consistently on good behavior since March. And and and and! My cholesterol is finally on the way down! It's still far from ideal, but it's getting a lot better. I still have the flushing reaction to the niacin, but I got smart and now take it just as I'm about to fall asleep, so most nights I'm already asleep before the reaction happens so I don't notice it.

I had a successful trip to Florida in mid-May. Lauren and Keith got married, so I took Thursday-Monday for myself. Of course, I'm still paying for all my expenses but it was so good for my mental health. I got to catch up with my former co-workers, visit with friends, work on my tan, cheer on my Bruins with plenty of Boston fans and transplants, and of course, see one of my favorite girls tie to the knot. Proof I was there:

I missed Rags a LOT, and it was the longest we'd been apart since 2008. I kissed him goodbye before I went to work on Wednesday morning and didn't see him again until I got home from work on Tuesday evening. Now, he look like an ewok and spent all week and weekend sweating and panting because I'm a horrible dog mother and haven't had him groomed in months. In my defense, his haircuts cost three times what mine do, so I do try to get as much mileage out of each one as I can. Then, when I finally returned from Florida and realized how badly he needed a haircut, the mobile grooming van we use crashed and was out of service for several weeks. We finally have an appointment this evening, so he will be recognizable again in about nine hours.

While in Florida, I noticed a giant bruise on my foot. I've noticed the same bruises on both feet before, maybe about six weeks earlier. I had gone out the night before and assumed I tripped or danced too hard or something. But this same exact bruise was back, but only on one foot. When I touched it, it was excruciating but also not really a bruise. It was some sort of mass that moved when I pushed on it. I got it in my head that it was a blood clot, and spent the next few days worrying about it. When it came time to fly home on Monday, I was in pure panic mode. I knew flying with a blood clot could turn into DVT which could kill me. Normally a cool, calm, collected traveler, I took my window seat at the last possible second before they closed the cabin door, and kept my foot/leg in motion for the entire three-hour flight to JFK. My chest was tight and painful, my heart was racing, and I was shivering yet sweating. I now understand what it's like to have a panic attack. I had a quick layover then a puddle jumper to Logan, where Juls picked me up and I could finally relax with a glass of wine.

I went to the doctor the next day, and she confirmed it was in fact a blood clot–actually a superficial thrombophlebitis. She said to take ibuprofen three times a day for a week (normally longer but with my ulcer history, that's the last thing I need) and keep it elevated when at rest but to stay active. That sounds like great advice, except it became so painful and swollen that I could no longer wear a shoe that touched the top of my foot. I was walking Rags two days later in the rain, and my foot hurt so dang bad that I had to take off my sneaker and walk the rest of the way barefoot in the rain, on pavement. The pain comes in waves and spurts, so I finally got an ultrasound on it Friday to ensure it wasn't moving or enlarging. Not at all shocking given my health history, the tech could not find the clot at all. She could clearly see how dark and swollen that part of foot was, and noticed how I flinched when she touched it, but it was now 4:30 p.m. on a Friday and I was told the doctor would review the report and call me Monday. It's Tuesday. Time to figure this foot out. Because my workout routine has taken a serious hit due to fact and cannot wear a shoe.

In other news, I am officially the 2013-2014 Junior League of Greater Springfield, MA Vice President of Membership. I'm busy planning summer socials, recruitment events, and trying to form our new member class for the fall.

I'm also busy planning Julia's bridal shower. I've been a maid of honor in a wedding before, but it was my cousin's wedding while I was in grad school at University of Florida, so I literally came up the day before the wedding and left right after the reception. My cousin and I haven't been close since we were little, so it was a nice honor but I told her up front I couldn't afford to throw her a shower or do any of the traditional bridesmaid things since I was busy with grad school 1,500 miles away. Now I get to redeem myself! I've received compliments on the invitations, and have been spending a lot of time talking to Julia's mom about ideas, since she's co-hosting with me. We're having it at a family friend's new home in a few weeks, and I just can't wait for everyone to RSVP so we can start really getting down to the nitty gritty details. The theme is a garden party, and we're using the three colors of our bridesmaid dresses–mint, pale blue, and, depending on who you ask or what you're buying, rosemary/aqua/teal, as seen below.

I'll do a full post of everything we make for the shower afterward, but the large pots will be for utensils, and the small ones will have a tiny foam ball that a wood skewer will stick into. I'll then affix food placards to the skewer. It'll look like a doily or flower, keeping with the garden shower and antique wedding theme.

Seriously Thyroid?

I had my annual physical yesterday. I actually didn't have one in 2012 because I got a job in Massachusetts and moved much earlier than I originally planned, and then when I got here, I had to go a month without insurance. Then I was trying to play catchup with my specialists and just completely forgot to get a physical.

First things first, I'm hypothyroid...again! My TSH is back up to 6. So we have to increase my Synthroid. Shocking. This may explain why I lost 7lbs in my first week of Jillian Michaels Body Revolution but haven't lost an ounce since then.

Secondly, my cholesterol is still through the roof. When I was diagnosed with Graves' disease, I spent a few days in the hospital. They ran every test under the sun, including a lipids panel. My total cholesterol was around 150. One year later, after being on propylthiouracil (PTU - an antithyroid drug) and propranolol (a beta blocker to lower my heart rate) for 12 months, my total cholesterol had doubled to 294. My physician assured me this was because of the beta blocker, since I was eating relatively healthy and had just started exercising again once my heart recovered from the initial thyroid storm. He told me not to worry about it, and my endocrinologist echoed that sentiment.

As of this week, my total cholesterol went up even further to 301. What?! This makes no sense. I spent the entire summer riding my bike every day and going to yoga, spent the fall eating like a bird because I was recovering from surgery and couldn't exercise much, and have spent the winter thus far exercising like a mad woman and eating insanely clean, staying at a strict calorie limit and not eating back calories burned. I have not once gone over the recommended 300mg of cholesterol per day, and rarely come even close to that. My mom's side of the family all has high cholesterol, but a lot of them are overweight and never exercise, so I'm not willing to blame it on genetics because I do exercise and I am getting my weight under control, slowly but surely.

The breakdown is:
Triglycerides 130 normal
HDL (good cholesterol) 72.5 high - which is good!
LDL (bad cholesterol) 202 very high - which is very bad!

The fact that my triglycerides are normal is suspect to me. My new/old (2003-2007, and 2012-present) physician wants me to cut my beta blocker dose in half. I have been asking to ween off this drug for a year but neither my endocrinologist nor my cardiologist were willing to help me do this since my resting heart rate was still pretty high. She says she has never seen such high cholesterol in a healthy, active 28-year-old. Gee, that makes me feel awesome. My brother nailed it on the head when he said, "That must be disheartening. You've been working so hard and eating well." No s&*%. Ugh.

We'll be repeating both the thyroid tests and lipid panel in eight weeks. I am on a strict low cholesterol diet until then (even though I was already watching my cholesterol intake) and am going to do as much as I can to get that LDL down - adding ground flaxseed to every meal possible including the oatmeal I already eat every morning with my breakfast, using only olive oil instead of butter, not making baking any sweets I might be tempted to eat, and keeping up with my six-day-a-week exercise program. Lent couldn't have come at a better time because fish and nuts help lower LDL and I've added a lot more of that to my diet to make up for the meat and poultry I've given up until Easter. All of these changes plus cutting my propranolol dose in half had better help or else I'm going to end up going on a statin at the ripe old age of 28.

Basically, all of my health problems right now can be attributed to Graves' disease. I wouldn't be overweight from six months on prednisone and constantly fluctuating hormone levels, I wouldn't have needed eye surgery for thyroid eye disease, I wouldn't have shin splints likely caused by being overweight, and I wouldn't have high cholesterol caused by a drug I need to keep my heart safe.

Because I was feeling so sorry for myself after getting my results, I went straight to the McDonald's drive-thru and got myself a shamrock shake. And since I had my last tetanus shot in 1998 and was long overdue, I had to get my Tdap yesterday, which kicked my butt. I spent the entire evening in bed watching TV because I felt so emotionally dejected, physically rundown, and my arm hurt like a motherf&$%#@. It still does, but I already did my workout for the day and survived.

Onward.

My Bipolar Thyroid

For those of you who have Graves' or understand it, or just like to follow my journey through it, you will be happy to know that I am back in euthyroid (normal thyroid) range.

Let's review this timeline again:
July 2009 - symptoms begin, Kelly is convinced she has a tapeworm based on eating buttloads of food yet losing weight by the day. She poops in a jar and doctor says she's fine. She enjoys this random & drastic weight loss.
February 2010 - Kelly ends up in ER after a resting heart rate of 150+ for more than 24 hours. Diagnosed with Graves' disease, and finds out it's one of the most severe cases her physician has ever seen.
February 2011 - Kelly swallows a radioactive pill that will eventually kill her thyroid.
August 2011 - Pill finally works. Kelly becomes hypOthyroid the same week her eyes bug out of her head.
August 2011-August 2012 - Kelly and her endocrinologists struggle to find the correct dose of Synthroid. First she becomes hypER and endocrinologist continues to lower dose every six weeks. After a three-month hiatus from doctor's appointments and bloodwork, Kelly finds out she is hypO again and needs a higher dose.
August 2012 - For the first time in a long time (3+ years), Kelly has achieved euthyroid - meaning her thyroid levels are normal.
October 2012 - Just kidding. Kelly is hypER again and needs a lower dose.
January 2013 - Back to normal. Stay on the same dose. Test again in two months.

image from theinfertilityvoice.com

What a roller coaster!

I just hope this lasts. I feel good. I haven't had a sinus infection since I took antibiotics for the one I got right before Christmas. I've avoided the flu/colds everyone else seems to have succumbed to. I've lost 2.5lbs this week by staying under a strict calorie limit and exercising every day - either running (I'm training for a 5K), ashtanga yoga, or stability ball workouts. I no longer need a gym to feel motivated to exercise because seeing that small number on the scale is all the motivation I need to keep going. On days like today, however, it would be nice to be able to get a run in somewhere indoors, but interval training on a treadmill is a b*tch and I'm simply too cheap to pay to use a treadmill. Like I've said before, I could always use the gym at work but I'm trying not to spend a single second more than 40 hours a week here. I also purchased a FitBit Zip, although it seems like a glorified pedometer unless I'm doing something wrong (in that case, please enlighten me in the comments section). It actually doesn't work all the time - sometimes failing to count a single step during a 60-second walk around my house - and I thought it would work sort of like a heart monitor, counting extra calories burned during workouts, but it doesn't. I guess I didn't really know what I was buying even though I'd been eyeing it for months.

Go Away, 2012

2012 was a long, difficult year for me. The year started off exciting. I rang in the new year with my best friend of 14 years, not knowing how much reconnecting we'd get to do over the next 12 months. As soon as I got back to Florida, I started interviewing for what would become my current job. I was offered the job on January 24, and accepted it right away. I was actually shaking when I walked into my boss' office near the end of the workday. I asked if he had a minute, and when I shut the door, I saw the panic on his face.

Everyone at work knew my family and (most of my) friends were here in New England, but I was very quiet about looking for a job as people usually are. Not that I every worried my employment was in danger, but I wanted to be respectful of my current employer. I miss that job every day. I don't necessarily miss all the people, but some, and I really miss almost everything about the job except for the fact that it was 1,500 miles from where I am supposed to be. I cried when I left my office for the last time, but I really had no idea at the time how much I would come to miss it.

Within two weeks (actually 13 days) of giving my notice, I was on the road with my dad, Rags, and whatever we could fit in every possible inch of my Corolla. We made it home in record time - leaving around 6 a.m. on a Wednesday and pulling into my driveway around 2 p.m. the next day.

Work was challenging at first - and I don't mean the tasks. I didn't tell anyone at my job in Florida, but I was only offered a part-time job at first. I was told it was because the last person didn't work out and they wanted to make sure I'd be a good fit before making me full time. It turns out that wasn't 100% accurate, and in order to become a full-time employee, I had to agree to basically do two separate jobs. Fortunately I still have only one boss and one office and one desk, but the second half of my job is not at all what I expected. The point is that I have a job, health insurance, lovely co-workers and OK colleagues, a roof over my head and gas in my tank.

My health was a whole other issue. I didn't have insurance at first - well I did, but it was a state-sponsored plan for people who only get paid so much (which I qualified for as part time). So I skipped three months of endocrinologist appointments. Big mistake when you have been going every six weeks for the last two years. When I finally went, my levels were all over the place and still continue to be to this day. But then I got to meet Dr. C who would later perform the most important surgery of my life (to date - hopefully the last major one ever) and get me one giant step closer to my old self.

So as I ring in 2013, I am one year older but a million times better than I was 365 days ago. And for that, I am thankful every single day.

Woe is Me

I think I need to rename this blog: Kelly's Medical Woes.

I saw Dr. C (oculofacial surgeon) this morning for my "it's been seven weeks since your surgery" appointment. The upper eyelid stitches (which dissolved) are completely healed and the scars are completely invisible, which is somewhat surprising since I am so fair-skinned and tend to get puffy, pink scars from paper cuts or razor mishaps.

Everything else is as it should be. The feeling on the right side of my face continues to return in the form of that pins & needles feeling when your foot wakes up after having fallen asleep. It's not painful, but it's also not comfortable, and it's pretty constant. He said this could last up to a year. Oh well.

I have very minor double vision when I look as far up as I can without moving my head. Who cares? I don't, and he doesn't either, because who the heck looks all the way up without moving their head? So we're not touching that, and he continued to profess how delighted he was that I didn't have any double vision that affected my eyesight or daily living. He was quite concerned this would happen as a result of removing so much bone and fat.

He wants to wait six months before performing the upper eyelid surgery, which I do need, but he said there is still some swelling that will continue to improve over the next few months. He also doesn't want to perform any surgeries while my thyroid levels are unstable, which they continue to be. I'm just glad they behaved the week of my surgery, for the first and only time in three years. I was really hoping I could have the surgery soon, but I agree it's best to wait until all the swelling is gone and my levels are stable.

My proptosis before surgery was 23mm in the left eye, 25mm in the right eye. Both eyes are now sitting pretty at 19mm. I have no dry, only some dryness, moreso than before surgery. I can no longer wear my two-week contacts for the full two weeks…more like 10 days. I am going to inquire with my optometrist about dailies, at least for the next few months. The surgeon gave me drops but I imagine the dryness is because of the minor upper eyelid retraction.

All in all, he is pleased with his work and even more pleased with my progress and realistic outlook on my situation. He knows I'm eager to be done with surgeries and back to my pre-TED face, but he appreciates that I am educated and informed on how this whole process needs to go.

So since that's settled, I decided to call my primary care physician and focus on my newest medical woe: these tiny little invisible bumps all over my body (except my face) that feel like goosebumps. They appeared about a week ago out of nowhere. It honestly felt like I had forgotten to shave my legs, and I almost got back in the shower to shave them when I was like, "Wait, I DID shave." Now they are everywhere. Mostly my skin feels dry, tight, and occasionally itchy, but then why aren't they red? Clearly my skin is just pissed to be back in the frigid New England weather, even though the rest of my body is jumping for joy because it's no longer sweating in November. So I have to go to the doctor tomorrow morning and find out what's wrong with my poor skin. Google tells me it's keratosis pilaris (which people often refer to as "KP" - my initials), but Google Images tell me it's not, because mine aren't red at all. You can't see them at all, only feel them. Gross? Yep.

I really thought I was dying today. It turns out I was just losing my mind. I kept seeing this clumpy white stuff fall onto my pants and desk. I checked the mirror - no dandruff. My neck has been really itchy from those bumps, so then I panicked thinking every time I scratched my neck, something was coming out of me. I checked the mirror - nothing on my neck except angry red scratches. Finally I took a step back from the mirror (I'm so short that unless I'm right up against it on my tiptoes, I can only see the top of my head) and saw the source: a clump of deodorant on my sweater. I guess I got it on myself this morning while getting ready, and no one at the doctor's office or in my office bothered to point it out, probably because my hair partially covered it. Either way, I am not dying, just a sloppy klutz.

Bad Non-Thyroid

I have the most unruly, nonexistant thyroid ever. I had labs drawn last week, and my endocrinologist's office called on Tuesday to tell me I need to start a lower dose of Synthroid (synthetic thyroid hormone replacement) because my levels show that I am hypERthyroid again. Wtf?!

Let's review this timeline again:
July 2009 - symptoms begin, Kelly is convinced she has a tapeworm based on eating buttloads of food yet losing weight by the day. She poops in a jar and doctor says she's fine. She enjoys this random weight loss.
February 2010 - Kelly ends up in ER after a resting heart rate of 150+ for more than 24 hours. Diagnosed with Graves' disease, and finds out it's one of the most severe cases her physician has ever seen.
February 2011 - Kelly swallows a radioactive pill that will eventually kill her thyroid.
August 2011 - Pill finally works. Kelly becomes hypOthyroid the same week her eyes bug out of her head.
August 2011-August 2012 - Kelly and her endocrinologists struggle to find the correct dose of Synthroid. First she becomes hypER and endocrinologist continues to lower dose every six weeks. After a three-month hiatus from doctor's appointments and bloodwork, Kelly finds out she is hypO again and needs a higher dose.
August 2012 - For the first time in a long time (3+ years), Kelly has achieved euthyroid - meaning her thyroid levels are normal.
October 2012 - Just kidding.

I literally refilled my $20 prescription two weeks ago. I am supposed to be using my insurance company's mail order pharmacy, but I can't. The minimum order is 90 days, but I haven't been on the same dose for more than two months yet, so my doctor won't write a script for 90 days (which I agree with). However, instead of paying $20 for 90 days' worth through the mail order pharmacy, I have to go to CVS every month and pay $20 for 30 days' worth. I'm basically refusing to rush to CVS and get the new prescription for a lower dose until I run out of the higher dose in two weeks. I can't throw away money like that. It's not like I'm going to die, and I don't feel hypER (trust me, I know my body after three years of this).

I used to hate my thyroid and yell at it all the time. Now I don't have a thyroid to yell at! I killed the mofo and yet its ghost won't leave me alone.

A Pain in the...Face?

It is with great pleasure that I announce that my face hurts. "But pain sucks," you say. Ah, but when you haven't been able to feel the right side of your face for the last four weeks, any amount of feeling is welcomed, including pain. I mean, it doesn't feel good and it's certainly not comfortable but last night, I started experiencing some intense tingling following by constant pain. Before, it was just shooting pains that lasted mere seconds. The pain has gotten so intense in the past 24 hours that I can't use my Sonicare toothbrush because the vibration is too painful in that particular part of my mouth/gums where I previously had no feeling.

They told me the numbness could last up to six months, so if some small part of face is healing already, that's great. Let's be clear, though: I'm still pissed Dr. C didn't tell me this was a possible side effect. However, I have forgiven him.

By the way, I promise a four-week post-op photo update later.
*Edit: I lied. I started Insanity when I got home and even though it was only the Fit Test, I was not cute afterward. You'll have to settle for a four-week-plus-one-day photo tomorrow.

I'll Wash Your Eye Out with Soap

...wait, no. That's not right. Well actually, it is for me. It feels like I got soap in my right eye. It's only felt like this for a few hours, and it doesn't hurt as much as it's just strange and uncomfortable, but it caused me to have a hard time fully relaxing during shavasana (the guided meditation/nap at the end of yoga). And during downward dog, I was trying to look at my left armpit without moving my head (don't ask) and that same eye was killing with the effort. Not sure what's going on there, but I did work six hours today, which is the longest I've worked in almost a month. Crazy, huh? I should be back to regular hours on Monday but I haven't heard back from Dr. C and HR requires a letter from him so we'll see. Not that I mind part-time but my paycheck is going to start taking a hit soon - I'm close to using up all my time off.

Anyway, back to yoga. I bought a pass for one month of unlimited yoga. It made much more sense economically, especially since I really like the Monday and Thursday classes, but I'm going to try and go even more often. I don't know that I'm strong enough for lifting or my Jillian Michaels DVDs yet, and yoga always helps me become stronger without even realizing it, so I'm going to stick with that for now. I'm going to go to some more challenging classes (I've been going to gentle classes for the last two weeks) and work my way back up to my pre-surgery strength and endurance.

Without meaning today, I went vegetarian today. Just for the day. I normally have some sort of meat or fish for lunch or dinner, usually both. Here is what I ate today, for inquiring minds:

I promise I didn't go to McDonald's, but I did go to Semolina Bread Company and have their California Vegetarian Wrap sans tomatoes. It sounded good, so I didn't care that there was no meat. I actually ate half for lunch and half after yoga, if you really want to know. And yes, I did eat a whopping 25% of my soup before I decided it was gross and threw it away. And that's where I had the Orange Hi-C, but hardly anyone sells that anymore, so I found it under McDonald's. And after eating half my wrap, I went to the new fro-yo place in town, and the cookie dough bites were just screaming my name. The cupcake flavored fro-yo, however, was disappointing. It tasted almost sour. I was expecting something like Coldstone's cake batter or sweet cream but it was weird.

I eat a lot of carbs. I love carbs. And sugar isn't on there, but I know I eat too much sugar. I'm really looking forward to meeting with the dietitian. I start my official food diary on Monday. Thank goodness, because the girls decided we're having a cookout on Saturday and the theme is surf 'n turf - scallops and steaks. Then the list of items the girls are bringing for brunch the next morning includes breakfast pizza, a strawberry & cream cheese pastry, muffins, French toast, and my contribution - sunrise mimosas. That will be a day I don't track what I eat!

Back in the Saddle

Friday night, I decided that getting back on track would start this past weekend. I planned to go to 9 a.m. yoga on Saturday, but when I woke up and looked at the clock, it was 8:59 a.m. Last week wore me out. I slept 11 hours last night. So instead, I made a healthy breakfast and some pumpkin coffee and decided that since it was 28 degrees out, I would do some yoga at home instead. I did, and by then it had warmed up, so I took the dogs outside for some fresh air. I attempted to both mow the lawn and use the leaf blower, but neither machine would start, so I opted for 15 minutes of raking a tiny little sliver of the lawn instead. I was exhausted and starving after such a small exertion, and woke up Sunday sore in my whole upper body. I guess surgery and nearly a month of no physical activity really does kick your butt. I did make it to yoga Monday night, so I want to try and go every Thursday and Monday night.

I got an email Friday night while attempting to determine why the dryer turns on and spins but won't heat up (I failed, by the way) letting me know I had been chosen to receive a scholarship to the GDATF annual conference in San Diego at the end of the month. Unfortunately, I had to pass it on but someone else will still get the opportunity to go in my stead. The scholarship covers the $260 conference fees and almost all of my meals Friday-Sunday, but not the hotel ($109/night x three nights) or the flight, which I could not find for less than $700 or without missing two days of work, and I simply can't miss any more work.

You know when you wake up and your eyes are filled with junk? Eye boogers, as I call them? Well I wake up every morning feelings like there is all this junk in my eyes. There usually is, but even after I wipe out the eye boogers, my eyes still feel full and tight as if I just opened them for the first time all morning. It's a strange feeling. I also wake up with a headache almost every morning, but I always have. I think it's more mold and allergies than eye-related, but my eye pain only makes it worse. On a positive note, I am back to wearing contacts now! I hate how I look in glasses and they were really starting to bother my ears and the bridge of my nose, so I'm happy to be a contact wearer again. It was scary putting them in for the first time in more than two weeks, but I was surprised to realize there was no discomfort. I have to go back so much further (a whole five millimeters!) to put them in and take them out, and since my eyes no longer bulge, I have to work a little harder to get them out. I used to just be able to open my eye and slide the contact right off, but now that my eyes are "normal," they don't fall out when I blink anymore. It's a good problem to have.

I decided that since my bruises are completely faded, it's not that exciting to see the change from day to day, so I will only be taking and posting photos on a weekly basis from now on. Since today is three weeks post-op, I documented what I look like both smiling and...not smiling? My eyes are not symmetrical, but that could be because of the additional swelling on the right side. Or not. Only time will tell, but either way, it'll all be corrected in a few months.

I can't seem to get rid of the congestion and nasal discharge, but I am told this is all normal after plain old sinus surgery, let alone having all kinds of stuff shoved up your nose and down your cheeks and behind your eyes, taking out lots of bone and fat from your head, and having your ethmoid sinuses taken out and put back in. In doing some online research to see what other hospitals and surgeons tell their patients, I read several warnings about not drinking through a straw after endonasal sinus surgery. Oops. I couldn't have NOT used a straw after my surgery. Nasal surgery doesn't result in a numb face and mouth, but the work that Dr. C did does, so I guess the numbness and need for a straw in order to drink trumps the risk of damaging my sinuses. I have had shooting pain through my far right lip and cheek that goes away after a few seconds, and I hope it means feeling will be returning soon.

Downward Dog with Decompressed Orbits

Today was another frustrating day at work. Then, when I got home, I had several emails letting me know I sent out a press release with a typo. I was exhausted and had the worst eye pain this morning. I debated calling in, but decided I could manage a few hours. So it doesn't really surprise me that I made a big mistake. Except when I realized I had copied and pasted the information from a co-worker, and he was the one who made the typo. That doesn't excuse my error - I still should have checked and rechecked, but today was not my day. Ugh. I almost feel bad, but then I don't, because I'm doing my best and people make mistakes.

I got a flu shot this evening. It was free from the town but I had to go to the senior center to get it. When I walked in, I was handed a piece of paper with "46" on it. I looked around and saw a bunch of old people sitting on couches and in armchairs. Forty-five of them to be exact. Once my vision cleared, I realized I wasn't the only person younger than 65, but I was definitely the youngest minus the children there with their parents. Whatever. It was for a flu shot. For free. My number was accurate, because about 46 minutes later, I was walking out protected from influenza.

I decided to go to yoga tonight. It was a gentle kripalu (like hatha) class with the owner of the studio. I adore her, and I think I'm close in age to her daughter, so we always have this moment when we see each other. The last time I went was exactly a month ago when I fell down the stairs and broke my tailbone in two places, but didn't realize it, so I went to yoga anyway. Even tonight, my butt hurt so bad when I did boat pose. I think my tailbone benefited from me being in bed for two weeks straight, but now it's time to start getting my strength and endurance back. I worried my eyes would bother me, but I took my glasses off and tried not to think about it, and it worked! I got some tissue dust in my eye so I kept rubbing it for the first few minutes, but eventually it worked itself out and I had a very good 75 minutes of peace, stretching, and relaxation. Afterward, Sheila came over and complimented me on my practice. I surprised myself. I thought I would be rusty about a month without yoga, but it's like riding a bike, but even easier to pick up where you left off. I showed Sheila what is left of my bruises (tiny pink lines) and answered her questions about thyroid eye disease and my surgery. She knew about my Graves, but we had never talked about my eyes before. It's funny, anyone who knows about Graves or TED, or is in the health care profession, would take one look at me and know I had Graves. Everyone else who didn't know me before TED would just think I had big eyes. So who knows what Sheila knew or thought, but she seemed happy to see me and I was so happy to be back in the studio.

Tomorrow I can start wearing my contacts again, but I don't really want to fight with my eyes in the morning before work, so I probably won't try until after work or even over the weekend. It's been a long time since my eyes weren't irritated by the TED, and I don't want to get discouraged in case they are still irritated from the surgery. My corneas themselves don't hurt, but I also have barely touched my eyes except to do the massaging of my lower lids and to put ice on them, so who knows how they'll react to foreign objects. Juls is looking into Lasik later this month, and it's something I'd like to have a consultation on eventually, too.

Kelly and the Terrible, Horrible, No Good, Very Bad Day

I forgot to eat breakfast this morning. This is what happens when I've been out of a routine for two weeks. I have been eating breakfast at home for two weeks, but usually I eat breakfast at work on weekdays. If I eat before work, I'm starving already by the time I get to my desk, so normally I heat up some oatmeal in the office or stop and get a bagel on the way. Today, I packed myself oatmeal and even remembered a spoon and a bowl, but somehow never remembered to heat it up or eat it. I also brought a mug of coffee to work, but forgot I straw so I walked over to the Starbucks in the dining hall to steal a straw, and I guess the coffee suppressed my appetite enough that I didn't realize how hungry I was until my stomach started growling around 9:30. Finally at 10:30 I grabbed my yogurt from the fridge and when I went to get my spoon from my lunch bag, I saw the oatmeal and realized why I was so hungry. I'm hopeless...

I think I was distracted by a slight crisis at work. I rushed to make sure I got a bunch of huge projects done before I left on the Monday before my surgery, and by huge, I mean literally huge. Billboard huge. Not only did the printing company screw up, but so did the billboard company. And no one bothered to call or email me to let me know, let alone try to contact someone else in the office. So here it is, 10 days in the month, and our billboards from September are still up, instead of the new ones for October that we paid a pretty penny for. Lovely. Fortunately, I did nothing wrong and have emails to prove it, but it's still frustrating to return to 2,379 issues when I'm not 100% yet.

When I got home from work, I spent like 10 minutes staring at the mirror. For some reason, I'm not happy with my eyes today. They look too close together. My face is fat, from both swelling, the steroids, and just being overweight. I guess I was expecting a miracle in the form of looking exactly the way I did before Graves. Except I was like 30 pounds lighter and tanner and younger. And my left eye looks bigger now, when for the last two years, I've been getting used to my right eye being bigger. I think I'm just having a Terrible, Horrible, No Good, Very Bad Day (for no reason) and I'm being hard on myself. I think Drs. C and S would cry if they knew I was bashing their hard work, but something just doesn't look right today. Then again, I'm dizzy as all get-out, so maybe I'm not seeing correctly. I still can't wear makeup, and my eyelashes are actually really obnoxiously long but also blond, so when I wear mascara, it completely changes the way my eyes look. I think they look much better with mascara, but who knows if that'll still be the case. I never worried much about mascara before Graves.

So what did I eat for lunch? McDonalds. I was starving and cranky and just wanted to be able to get home and take a nap. I'm going to call my primary care doctor and see about getting in to see a nutritionist or dietitian. I know what to eat and what not to eat, but there's something in my head telling me I deserve ice cream or something greasy. I don't have the funds to reward myself with nice things so I reward myself with food, and I've never been that like until the past year or so.

After my afternoon-nap-turned-evening-coma, I realized someone put my laundry in the dryer. With a dryer sheet. Half my things I either don't dry in the dryer, and even if I do, I never use dryer sheets anymore. Not only do they ruin the dryer, they ruin your clothes. And you shouldn't use fabric softener/dryer sheets on towels, otherwise your towels won't be as absorbent. So that annoyed me. It shouldn't have been that big of a deal, but when you add it to the rest of my  Terrible, Horrible, No Good, Very Bad Day, it really set me off.

Fortunately, my Junior League conference call was without incident. As recording secretary, I take the minutes, so I have to try and stay focused, which is so hard on a conference call when the interwebs is calling my name. It lasted 45 minutes and I was so tired. So tired that I am going to bed "early" tonight. I don't know what it is, but I've had a hard time going to be "on time" this week. Tonight will not be an issue.