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Time flies by when you have no thyroid…

Hi.  It’s been nearly two years since my Total Thyroidectomy in April 2012.  I am doing well.  I moved to Denver in the fall of 2012 after traveling to Africa for three weeks – something I didn’t think I’d have been able to do before the surgery.  The thought of sitting on two 7-hour flights in a row knowing that if I had a thyroid storm, I wouldn’t be able to get treatment 30,000 feet over the ocean, and I’d die was too much to risk.  That sucks for someone interested in international travel…

So here I am in Denver, I found an Endocrinologist named Eric Albright who spent a full 30 minutes with me on my first appointment!  He’s knowledgeable, listens, informs me of things I’d never even heard of, even after 6 years of obsessive information searching for anything thyroid related.  I have appointments at 6-month intervals for the first time in almost 8 years.  I just realized that I’ve been going to an endocrinologist at least every two months for over seven years.  That blows my mind.

I’ve been steady on 125mcg plus an extra half pill on Fridays – which is very close to the 137mcg dose, but I’m fine with the extra half.  I lost almost 10 pounds last spring – intentionally, by recording my food intake – to get rid of what had built up during the roller-coastering.  I’ve been keeping it off, but it’s a little hard in the cold, snowy weeks interspersed in a Colorado winter.  My activity of choice is running.  The stability of the post surgery levels has allowed me to make steady progress.  In the last six months of casual jogging, I’ve been able to double my mileage and decrease my average pace by a full minute per mile and hit a couple of personal records while I was at it.  And that’s on top of a full time MBA program with a 3 hour commute each day.

That’s another reason for my disappearance – I just finished my first semester in the MBA program at CU Boulder.  As someone with little to no background, this has been a really intense learning experience, and not just academically.  It’s the hardest thing I’ve done since the decision to remove my thyroid.

I got a really sincere comment recently and wanted to address it before the semester starts up again and it gets lost in the shuffle.

Just came across your post… Wondering how you are doing now post surgery.. Also wondering why RAI wasn’t an option. I was diagnosed with Graves’ disease 2yrs ago and just ended 2yrs of methimazole on 12/30/13. I’m scared for what’s next- hyperthyroid symptoms coming back. I have felt good with the treatment (except for the awful mood swings & craziness) and got my fitness back. Our stories sound similar; I run and have had three pr’s in the last year since thyroid levels normalized. I don’t want to start over again. So, if you wouldn’t mind updating me on how you are doing, I would really appreciate it. My endocrinologist is not as understanding or receptive as I initially thought. Hope you are doing well :)

 

So, I’m doing great!  I’m in a really intense and stressful period with grad school and facing my fears about this huge financial risk I’ve taken.  Without the stability, post TT, I doubt there’s any way I could be dealing as well as I have been, and believe me, it’s not been very graceful.

Stability.  That was the main reason for my choice to finally have a TT after six years of the roller-coaster that is Graves’ Disease.  I can’t believe my relationship survived those mood swings, though I did lose others.  Perhaps more disturbing to me were the body changes.  With each recurrence of hyperthyroid, my thyroid got a little larger and more visible; I lost muscle tissue and even if my weight did not fluctuate much, I gained a larger percentage of body fat as a result and lost a lot of fitness.  I just had to wait for my levels to come down before I could even do muscle building exercise, let alone make any progress.  I also lost a lot of the fatty tissue underneath my eyes at one point, and though I feel some of it came back, I think the disease aged me faster than time.  Given the nature of the disease, how could it not?

Another form of stability present since my surgery is that my anxiety has all but disappeared.  I may have said this previously, but I’d like to reiterate.  I used to have to talk myself down from panic attacks all the time.  I’m so grateful for that to be gone.  It used to happen, less so, but still happened even when my levels were “normal”.  Also, no palpitations.  My heart muscle was stressed and now it’s not unless I do it on purpose with strenuous exercise.  It’s a huge relief.

There were three main reasons why I decided that RAI was not an option for me.  First, there is evidence that Thyroid Eye Disease – the bulging eyes – occurs more frequently in patients who have undergone RAI.  Some endocrinology surgeons have suggested that removing the thyroid rids the body of the antigens, thereby decreasing incidence of TED.  Not sure how much credible, peer-reviewed research has been done on that, however.  Second, the stabilization period is much longer and more frustrating with RAI.  You still have a slowly dying organ in your body making thyroid hormone at unpredictable rate and levels, respectively.  It’s often the form of treatment recommended by the medical community, because to them, it’s relatively cheap, “convenient” and definitive – a relief to the medical community, but not to me.  I didn’t suppose it to be any of those things, except for cheap compared to my shite insurance deductible.  The third reason I chose the surgery over RAI was that my thyroid was enlarged and visible.  It changed the way I interacted with the world.  I withdrew and couldn’t get past feeling like a circus freak.  If I really believed it was the best treatment, perhaps I could’ve found a way to deal with that aspect, but considering the other two, it didn’t seem worth it.

I have to admit that sometimes it freaks me out that I have to take a pill to stay alive, but those are the circumstances I chose based on the cards I was dealt, and I am still content with my decision.  For the first year, I was on a high, so much relief.  I felt human again.  I felt like I could engage with the world again.  I was high on happiness and relief.

That’s my story.  That’s where I’m at.  School starts in a week and it’s probably a safe bet that I’ll disappear again for a while, but do know that I receive email notices when someone comments, and I will respond.  I know how difficult it is to navigate this disease, particularly when the internet contains mostly people’s horror stories while the success stories are so few and far between because we are then allowed to go on with our lives rather than living in a world seen through the lens of thyroid disease every moment of the day.  So I’ll leave you with that run-on sentence and please feel free to contact me personally at kat (at) sudstress (dot) com.

I wish you all the best and keep moving forward one day at a time.

 

 

 
 

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Two week update

Today marks two weeks since the removal of my thyroid.

Perhaps I should’ve updated more often, because now the first week is kind of a hazy memory.  I started weening off the pain meds at about one week.  Then, on Monday, I drove for the first time.  I still have to turn my whole torso to look behind me, I can’t tilt my head back much at all, and it still feels like my neck is sewn on too tight.  My incision is pretty dark and is about 3 inches across – longer than I thought it would be.  I’m used to it now and am taking pictures as it heals.

Almost from the day I got home, I had a good bit of energy.  When they handled my thyroid to cut it out, it likely stimulated it to release a bunch of extra hormone into my bloodstream before it was removed.  I experienced palpitations during surgery (I was told by the anesthesiologist) and for a few days afterward, but they felt very minor compared to those I experienced in my hyper days.  Because it is often difficult for me to take it easy when I’d rather be productive, I don’t think I allowed myself as much rest as I really needed.  I forgot that just because I felt fine didn’t mean that there wasn’t a big slice across my neck that needed healing, and that the body heals when at rest.  So two nights ago I crashed.  My digestive system started acting crazy, I had terrible cramping all night and into the next morning.  The minute my morning green smoothie hit my lips, it felt like my entire intestinal tract went into spasm and I couldn’t even stand up straight.  I was informed that I was probably dehydrated on top of not getting enough rest.

In an effort to aid in my further healing, I rested all day yesterday with my kitty Lilly, who did not leave my side and is currently napping next to me as I write this.  I got a full night’s sleep, took an easy walk and then napped three or four times throughout the day and still went to bed and slept like a log.  I must have needed it.  I’m taking it easy again today, drinking plenty of water and resting.  I ran the essential errands – kitty litter, kitty food, and groceries.  I have all these other things that I’d like to do today:  make soap, clean out the refrigerator, put my laundry away, clean the kitchen floor.  Then I remind myself that there is plenty of time to do those things and the priority now is rest and healing.  I go back to work on Tuesday and I’m not going to take the chance of exhausting myself during the time that I need to be recovering.  It’s easy to forget that my body is using a lot of energy to regenerate tissue and heal the space where my thyroid used to be, I just need to step aside and give it the opportunity to do so.

I don’t really know yet how the synthroid dose is suiting me, since I’m only two weeks out and I still have my own hormone running through my bloodstream.  My educated guess is that I’ll start to have an idea starting at about six weeks out from surgery.  I’m hoping for a relatively seamless transition since I feel I’ve already paid my dues over the last six year roller-coaster ride of hormone fluctuations.  I’ve already wasted too much energy on anxiety and feel there’s no more to spare on something so useless.  From here on out, I can only look forward.  I promised this to myself before the surgery and so far that promise is holding solid.

I have a follow up appointment with my surgeon on Monday and another with my Endocrinologist on Wednesday.  I am fairly confident that they will both tell me that everything is looking good and that I’m recovering nicely.  It’s really strange.  I have to keep reminding myself that I’ve already done it.  That the surgery is behind me.  I feel like along with my thyroid, the surgery removed a lot of the weight of the world from my shoulders.  Granted, I still have my struggles, like anyone does, but I feel lighter.  I’ve always laughed easily, but the last couple of weeks have been full of laughter and ease that were hidden in shadow, previously.  I have a tremendous sense of freedom and relief.

I feel joyful that I can walk around with my hair back and my head held high.  I almost feel as if I had plastic surgery.  I’ve rid that sense of shame and embarrassment formerly choking me.  I may have a big red slice across my neck, but I feel good and proud and slightly bad ass about it.  It’s proof to me and everyone who sees me that I’ve faced one of my biggest fears and came through with flying colors.  It’s my own permanent merit badge.  I love my scar and life!  I am a walking medical miracle now.  Without the little pill I take every morning, I would slip into a myxedema coma and die within a matter of weeks.  We are all lucky to be here, to be alive.  “There, but for the grace of God”, I genuinely get it now, to my core, and I hope to hold it with me further on this path.  All we have is now, and right now is good.  In that spirit, I’d like to leave you with another lesson in the words of Pema Chodron:

The Path Is the Goal

What does it take to use the life we already have in order to make us wiser rather than more stuck?  What is the source of wisdom at a personal, individual level?

The answer to these questions seems to have to do with bringing everything that we encounter to the path.  Everything naturally has a ground, path, and fruition.  This is like saying that everything has a beginning, middle, and end.  But it is also said that the path itself is both the ground and the fruition.  The path is the goal.

This path has one very distinct characteristic: it is not prefabricated.  It doesn’t already exist.  The path that we’re talking about is the moment-by-moment evolution of the world of phenomena, the moment -by-moment evolution of our thoughts and emotions.  The path is uncharted.  It comes into existence moment by moment and at the same time drops away behind us.

When we realize that the path is the goal, there’s a sense of workability.  Everything that occurs in our confused mind we can regard as the path.  Everything is workable.

I would like to say, again, a big, big thank you for all the support I have been receiving throughout this experience.  Well wishes, flowers, smiles, hugs, thoughtful texts and inquiries, prayers, vibes, and all the rest.  It’s truly had a positive influence on how well things have gone so far and has helped lift my spirits overall.  Thank you, thank you.  What an incredible healing force you have all been.

 

 
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Posted by on April 20, 2012 in Total Thyroidectomy

 

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Here goes…

Well, what’s left to say?  I spent the day running last minute errands.  My mom and I went to the Farmer’s Market to get mushy food in case I feel like I can’t put down the solid stuff.  We got some sweet potatoes for mashing; lots of beans for pureeing; kale, bananas, berries, and parsley (forgot the celery) for smoothie-ing; soup for healing…

Yesterday I worked out the crazy medical bills that have started to come in and stress me out.  I paid the $54.00 doctor bill which is separate from the hospital bill in that the doctor charges for the interpretation of the ultrasound and EKG while the $399.00 hospital bill is for the actual ultrasound performance.  The $889.00 “this is not a bill” statement of charges that is being sent to my insurance is for the EKG and laboratory work that was done during my pre-op appointment – fortunately they did not have to re-do the pre-op or that would’ve been a really expensive cold I caught.  I thought I was only going to be responsible for a little over $1,000 for the actual surgery, but after the second woman I spoke with and the varying ways different people code medical procedures, I have absolutely no idea what I’m going to be facing financially.  The good news is that two of the three people I’ve spoken to at the billing department of Emory University Hospital told me the something similar, which is that I can arrange a payment plan once I receive a bill and I don’t have to sort it out beforehand.  So, I opened a tab with $399.00 which I will begin paying in May since I don’t work two weeks this month, and as I receive the next two, I can just call them up and have ’em put it on my tab.  Gotta do what you gotta do, eh?

Earlier today, my surgeon’s secretary gave me a call to make sure we’re still on for surgery tomorrow.  Not sure why she didn’t call the first time, but she did have heart surgery recently, so I’ll give her a pass on that one…  She’s a sweet lady, a bit odd, but in a good way.  While I had her on the phone, I asked her a question about something that has been concerning me.  T.M.I. ALERT!!  My period is due tomorrow.  Of course that’s no guarantee that it will come, but the way things have been going, I figured I’d be in for it on surgery day.  I know that when you have anesthesia, you have to remove all metal from your body – jewelry, piercings, etc., as it will burn you or something of the like.  On top of that, on my first go-round, they told me to get completely undressed under my gown, under-roos and all.  Since you never really know what goes into certain products, and if I were to use an internal feminine hygiene device a tampon, what if there’s some metallic derivative, like how they use aluminum in antiperspirant, and I end up with third degree burns on my delicate lady walls?  As ridiculous as that sounds, I’m not taking any chances.  Maybe they have some kind of surgical menstrual diaper or something, how do I know?  So she puts me on hold to ask the surgeon before I could protest, then comes back on the line and tells me “He said ‘you’ll be fine'”.  Oh, good.  I guess I’ll just ask tomorrow if circumstances call for it, like I should’ve just decided to do in the first place.

So, that’s what’s going on with me.  A little more peace, a little more ease.  I do still have a bit of the collywobbles.  I had one angry outburst due to an upturned bowl of quinoa and broccoli, as well as a couple of stress dreams, but overall, doing much better than the first try.  It’s really strange how this feels physically.  The first time, I was so knotted up that a two hour massage couldn’t fix it.  Then, after the post I wrote about the three poisons, where I realized I had the choice to let go or try to hold onto my metaphoric jello by squeezing it in my fist, I really did let go.  I completely forgot about the knot in my shoulder, it just dissolved.  What I’ve been feeling now is the very same feeling I felt in my body while getting ready for the seventh grade dance where I told my “boyfriend” I’d kiss him afterward; the very same feeling I had five minutes before the end of the school day in seventh grade as I prepared to speed-walk out to my bus while the six girls who bullied me daily chased after me, threatening to “kick my ass”, as was the popular phrase back then.  Whether it was anticipating an exciting first experience or the fear of physical harm, it was the exact same feeling back then, and the chemicals running through my bloodstream are the exact same ones now.  They transported me back to those moments instantly, like a smell that puts you in the most specific time and place.  The fire in my belly makes me wonder if I’m excited, like I’d feel if I was moving to Paris, but the brain says “Holy shit, I’m about to jump off a ten story building and I’m not sure if that’s a regulation air mattress down below”.

I’m experiencing some unease, but I think that’s natural for anyone about to go under for any kind of surgery.  The difference this time is that I’m breathing, thinking and feeling more positive, and absolutely ready to lift this heavy burden that I’ve carried for the last six years so that I can move forward with my life and do the things I’ve been wanting to do.  I’m looking forward to not losing any more precious moments that would’ve been filled with laughter and joy, but instead were filled with self-consciousness and focused on ways to hide my neck.  I think of how many more moments I could’ve enjoyed in my very special trip to Costa Rica, how many more pictures I would’ve participated in, how many more times I could’ve been truly present.  I’m ready to participate in life instead of hiding from it, one step at a time.

I have to be to the hospital at 7:30 a.m. and surgery is scheduled for 9:30, but I’ve been told it will probably be at 10:30 since it’s not a normal surgery day.  I anticipate returning home on Saturday morning.  I will try to post about my experience as I recover and I also have some pictures that I might share.  I also have a few episodes of An Idiot Abroad and Arrested Development to keep me smiling.  Thank you to all of you who have wished me well over the course of the last few months.  I feel surrounded by light and love, and I am smiling.  Here goes…..

 

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You can’t hold onto Jello by squeezing it in your fist.

Things have slowly settled into place since my surgery was rescheduled.  My boss at work retooled the entire schedule so that I could work a full schedule up until the day before surgery.  I know that had to be a pain in the ass, so that felt really generous of her.  Even though I did end up with a couple of extra days off the first week, which makes finances a little tight, at least I’m not out of work for a month.  That’s a huge relief!

I was able to reschedule my tax appointment for a day that does not interfere with work.  That was a concern since my tax guy is way out in the suburbs.  To make tax day easier to take, the three of us (my mom, Anto, and myself) are going to head up to Amicalola Falls afterward and make a day trip out of it with a picnic and a hike.  Lovely.

My mom’s original return flight was April 1st.  Being that my surgery was rescheduled for April 6, we looked into what it would cost to change the return date.  Turns out it would be about $350!!  So, I looked to Ol’ Faithful: Clark Howard’s Atlanta travel deals website to see if there were any deals.  It just so happened that Frontier was running a special to Albuquerque, where my mom lives.  We decided to wait a day or two to book the one way ticket, as we were waiting to hear back from the surgeon’s secretary who told us she might be able to reschedule for March 30.  I went to check if the deal was still on the next day and all the information was replaced with a notice that the Clark Howard show was on vacation in Europe and travel deals would resume the following week.  What luck!  If I hadn’t checked it the day before, I’m not sure I would’ve discovered the fare sale.  So we went ahead and booked with Frontier.  It cost $244, including two checked bags which would’ve run an additional $30 for one on the original flight with United.

As it turns out, I may even just get a night or two in the cabin in the woods, yet!  My mom will only be here for one week following my surgery, rather than two, so if we can get it, we’ll go to the cabin just four days after my surgery.  Knowing that many people with desk jobs return to work after one week, I am hoping that a one hour car ride won’t be too much for me.  I think a couple days to relax in the woods will be just what the doctor ordered.  *fingers crossed*

So, it seems that when you just let go, things eventually work out.  I can’t tell you how stressed I felt the moment the decision was made to delay surgery.  Not knowing how difficult each variable would be to change.  I just had to approach it one thing at a time.  When I wrote the last post, I had chosen to let go and felt a tremendous weight lifted.  Fortunately it stuck.  I’ve remained loose.  It had been like trying to hold onto Jello.  The tighter I clench my fist, the more of it that squeezes out through my fingers and onto the floor.  If I just open up my hand and let it be, it’ll wiggle and dance in its gelatinous glory and remain in one piece.  Then, if it still flops on the floor, it’s because there was an earthquake or I fell asleep, either way, due to events beyond my control.  Not the most graceful analogy, but you catch my drift.

 

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Do Over.

I had an epiphany yesterday.  As positively as I may seem when writing about this experience so far, ending my posts on the positive note, I hadn’t felt that way offline.  The entire past few weeks, I’ve been emotionally and physically tied up in knots.  My shoulders have been up to my ears and I couldn’t loosen up despite stretching and massage.  I was flailing about desperately.  It put a strain on my emotional well-being, my physical well-being, and the well-being of a most important relationship.  I have to say, I was really surprised when taking the perspective of the outside observer.  I normally lean into the dark, messy, scary parts of life.  I am not afraid of my emotions, I understand that they pass through like a storm or a cold, and know not to identify with them or let them envelope me.  I normally would consider myself pretty strong and feel like I always pull through when things come down to the wire.  I was surprised to see how difficult I was making this on myself, how much resistance I had, and quite frankly, with how little grace I was approaching this ordeal.

My Mom and I did a Native American ceremony, like we’ve done for most of the big events in my life, to help me to say goodbye to my thyroid the night before the surgery.  I did some heavy emotional and spiritual work for over two hours.  I realized that I have so many personal issues tied to this decision.  In many ways, I’d felt like a failure by not being able to heal myself and that cutting it out is equivalent to giving up/quitting/failing.  I questioned whether I’d been on the verge of healing and was I giving up right before some great success, like healing wasn’t possible sans gland.  I’ve chosen to give up the illusion of control and the most fundamental form of self sufficiency.  These are difficult things for me to give up.  Letting go of my thyroid goes against some of my very strong convictions.  Many times it’s the belief systems that are harder to let go of than anything else.  This is the work I did Monday night.

I made some progress, enough that I was able to go through with it all before the surgeon called it off.  I woke the next day feeling pretty depressed.  I wrote about it.  I did indeed go for a walk, which made me feel better, but those feelings crept back in later that evening.  I couldn’t sleep, I was feeling desperate, looking to cling to something, some kind of guarantee.  Looking back, I know that it was all in an effort to avoid, to resist, to shield myself from change, from fear, from the ache of loss.  The irony is that all of these attempts just exacerbate those feelings that I was so desperately trying to avoid.  We can not both fully live and avoid these messy bits.  They are part of life.  I was reminded of this the next morning.

I awoke Thursday knowing that I could not continue to approach the situation the way I had been, and I picked up Comfortable With Uncertainty, 108 Teachings on Cultivating Fearlessness and Compassion, by well known American Buddhist nun and author Pema Chodron.  Among others, I read the following passage, which spoke to me and opened me to epiphany:

The Three Poisons

“In the Buddhist teachings, the messy emotional stuff is called klesha, which means poison.  There are three main poisons:  passion, aggression, and ignorance.  We could talk about these in different ways — for example, we could also call them craving, aversion, and couldn’t care less.  Addictions of all kinds come under the category of craving, which is wanting, wanting, wanting — feeling that we have to have some kind of resolution.  Aversion encompasses violence, rage, hatred, and negativity of all kinds, as well as garden-variety irritation.  And ignorance?  Nowadays, it’s usually called denial.

The three poisons are always trapping you in one way or another, imprisoning you and making your world really small.  When you feel craving, you could be sitting on the edge of the Grand Canyon, but all you can see is this piece of chocolate cake that you’re craving.  With aversion, you’re sitting on the edge of the Grand Canyon, and all you can hear is the angry words you said to someone ten years ago.  With ignorance, you’re sitting on the edge of the Grand Canyon with a paper bag over your head.  Each of the three poisons has the power to capture you so completely that you don’t even perceive what’s in front of you.

The pith instruction is, whatever you do, don’t try to make the poisons go away.  When you’re trying to make them go away, you’re losing your wealth along with your neurosis.  The irony is that what we most want to avoid in our lives is crucial to awakening bodhichitta.  These juicy emotional spots are where a warrior gains wisdom and compassion.  Of course, we’ll want to get out of those spots far more often than we’ll want to stay.  That’s why self-compassion and courage are vital.  Without loving-kindness, staying with pain is just warfare.”

That was the one that blew it wide open for me.  I’ll spare you a line by line analysis as to how this resonated with me, but the short story is; the reason I’ve been having such difficulty is because I’ve been using every trick in my book, every old pattern from childhood to try to avoid these poisons as if they’d kill me.  Hilariously enough, as most of the lessons in my life tend to be, it is all due to a decision I made.  Oh, life, you’re such a prankster!  After reading several more passages on the heels of this one, I realized that I can simply decide to let go, let that stuff in, breathe, and enjoy the life I have rather than be consumed by avoiding.  I did, and instantly my body loosened up, my mind freed up, I felt like I got my life back, like I could be me again.  This surgery being delayed gave me a chance to do it over again with some dignity and grace.  I found something bigger to lean on, something that won’t crumble under the weight of me and something that creates space and light within me.  I just need to remind myself if the vices start to tighten again.

 

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