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Reply and Update

I just received the following comment and wanted to write a proper response, so I thought I’d make it a post rather than a short comment. I’ve been meaning to write anyway, so this is a great reason to do so. I swore I would keep up, but alas, life keeps moving swiftly.

Hi Kat

I’m curious how you’re doing now. I’m having a TT for Graves Disease on Jan 3rd and I’m soooo anxious about life without my thyroid. All of the horror stories on the Internet have me so scared. Your story seems like a positive one so far. How are you doing now? I’m hoping that the few posts/updates means you’re out there living your life and not worrying about your thyroid anymore!!! Please let me know there is hope after TT!!!

Jen

Hi Jen, thank you for the comment and for the nudging me to update my story. I have indeed been living life like crazy for the last few months, which is why I haven’t written. Since July, I’ve done/am doing the following:

  • moved from my apartment of 6 years into my boyfriend’s house
  • studied for/took the GMAT
  • quit my job (to travel and move)
  • received immunizations for Polio, Typhoid, Yellow Fever, etc.
  • traveled within Africa for 3 weeks
  • was on anti-malarial preventative medication for a month
  • sold my car and half of my furniture
  • traveled back and forth from Atlanta to Denver/Boulder three times to piece together a multistage, cross-country move
  • moved from Atlanta to Colorado via moving van for three days
  • finishing up my application for an MBA program

I’m still in the process of getting settled, looking for a job, finding my way around, writing application essays, dealing with car insurance bureaucracy for a complicated car-borrowing situation, looking for a new endocrinologist, etc….

Indeed, living life.

Things have been a little irregular with my TSH levels, but I attribute that to the travel and transition from Atlanta to Colorado that is still in a bit of upheaval.  I realize you probably deal more with T4 and T3, as I did since my TSH was pretty much at a constant .01, so relying more on TSH is something you’ll get used to after your TT.

I started with 112mcg of Synthroid (brand specific!) and my TSH shot up to about double the “normal” range.  I was then put on 137mcg (two notches up in dosage) and at 6 weeks my TSH was headed back down toward hyper-range, and I was put on 125mcg.  This seemed like the Goldilocks method (too little, too much, just right) so I figured we’d found our stable dosage.  The catch is, I left for Africa the week I started on 125mcg and had little control over what I was eating – and we were all eating A LOT!  Go figure.  There could have been soy oil in everything for all I knew.  When I did my labs (at only 4 weeks due to out of state circumstances) my TSH was way up and she wanted to put me back on 137mcg.  This did not make sense to me because I was headed toward hyper on that dosage just weeks earlier.  (I may be one of the few people you hear of that refuses a higher dosage, but I was having heart palpitations on 137mcg like I did when I was hyper naturally)  So I held off and did my labs a couple of weeks later (again, still too soon, but necessary due to circumstance) and it appears as though my TSH is headed back in the right direction on 125mcg.  Another kink in the chain, I was on Malarone – an anti-malarial for almost 30 days and that could’ve had an impact on my absorption.  The color of the pill looked like it had pigment made from iron oxide – and that could have interfered with absorption.

As you can see, there were way too many variables to really be messing with dosage.  I have to say, I’ve felt great and not great on each level of medication I’ve been on.  It’s been so long since I’ve lived without an awareness of thyroid levels that I forgot what used to be “normal” for me.  I’ve always been hyper-aware of changes in my body and when my levels fluctuated while I still had my own thyroid hormone, I could predict my lab results based on various physical symptoms, my menstrual cycle, and anxiety levels.  With Synthroid, my T4 hasn’t fluctuated as much as my TSH, and perhaps that’s why I don’t feel the changes as subtly as I did previously.

Since my surgery, my menstrual cycle is exactly 28 days no matter where my levels are.  That’s kind of weird.

Since I’ve stopped living out of a suitcase, remained in one time zone, and resumed cooking for myself, I am starting to feel better.  I had put on a couple of pounds before I left for Africa, looking back, it seems stress related, but nothing anyone besides myself might notice, and then added about four more in Africa.  I started to freak out, wondering if this was going to spiral out of control.  I think indeed it easily could if I continued to eat road and restaurant food I while remaining sedentary as I couldn’t help but do, whether due to the moving truck, sitting on one of my 13 plane rides or even in Africa where it wasn’t safe or possible to go out for a jog among the hyena of the Masaai Mara or get lost out in the the middle of the Great Rift Valley in a little place called Ewaso.

So, as my life begins to stabilize, I predict that so will my TSH.

If I could offer some words of encouragement…

I would tell you not to be scared, but I know that’s impossible.  I was absolutely terrified before my surgery.  The best thing that I did for myself was finding a way to just let go.  It was the ultimate lesson in learning to stop trying to control.  You are the only one who knows what your personal lessons are surrounding this and it is a huge opportunity for personal evolution and growth that many people do not have the chance to undertake.  Perhaps that sort of perspective can help calm your mind as it did mine.

Aside from the fact that I wake at 4 a.m. to take my pill every day, Graves’ Disease has been MUCH less intrusive in my life than it has been the last six years.  I still feel relief.  I still am thankful and find it difficult to believe that I have already gone through surgery.  It still feels like a weight has been lifted.  I still have $14K in debt, but after the initial sticker shock, that even feels okay.  I’m alive, I’m functioning well, I feel positive about my future.  I don’t have a single, miniscule thread of doubt or regret about making the decision that took me the better part of three years to make.

My scar is longer than most people’s because my thyroid was pretty big.  It’s still red, but I haven’t bothered with Maderma or anything to minimize it.  As soon as I find it, I’ll start using it.  I kind of liked the novelty of it, it was something awesome to show for what I went through.  Now it just clashes with necklaces…  I don’t really have any hang-ups about scars, so it’s not an issue for me like it can be for a lot of people.  My concern has always been the weight, muscle-wasting, and heart damage issues.  I feel the surgery definitely mitigated those for sure!  One more thing…  I’ve stopped obsessively searching the internet for answers that don’t exist.  What a relief.

I hope what I’ve said encourages optimism in you.  I feel that above all, my greatest asset was my positive attitude that came from I don’t know where, just in time for the surgery.  I think it was a gift that I was too sick for the original surgery date, as I was not in the proper head space for the best outcome.  Attitude will be your best ally.  That does not mean you can’t be scared, but you can feel the fear and still have a positive outlook.  There is no other way to look at it.

If you want more detail regarding any aspect I may or may not have mentioned, ask away!  I’m very open to sharing, just busy 🙂

I wish you the best of luck, Jen.  You will be fine.  Just take it one thing at a time.

Sincerely,

Kat

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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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T minus 12 hours…

I’m starting to get butterflies.  I haven’t been able to focus much on the upcoming surgery because I was walloped with a nasty cold late Friday night.  I was basically bedridden all of Saturday; managed to take a shower without passing out on Sunday; had my friend/neighbor to drive me to the airport to pick up my mom, as I did not feel it was safe for me to be driving; but started to do better once I was able to eat some food.  Today I am finally getting stronger and feeling better.  I do have a horrendous cough and it is a concern for me that the anesthesiologist may opt to delay surgery.

At this point, it’s been such a long, drawn out, emotional process that I just want to get it over with already.  I feel like I’m at the end of a very long, very high diving board and as I take my first bounce, they might tell me to climb down and come back another day.  I had an unfortunate experience with a diving board in seventh grade, so I’d rather just cannonball off the side.  Even if it’s not as graceful, at least I’ve taken the leap and I’m in the water.   I must admit, there is, and will probably always be, a part of me that believes that this organ belongs in my body and would do anything to avoid having it cut from my neck.  Delaying my decision, however, is not the answer.  It may be what happens due solely to safety reasons, but it will not be my call.

I spoke with a nurse from general surgery and she said I could take an expectorant, so I went straight to cvs and grabbed some to give my lungs every chance to be as clear as possible by tomorrow morning.  Last night I hovered over a bowl of steaming eucalyptus water – being a soap-maker comes in handy more often than you’d think.  That seemed to have helped based on the way I felt this morning.

When I laugh though….   I sound like I’ve spent thirty years suckin’ on the butt end of a Marlboro Red.  *shudder*  The nurse did say that it’s common to reschedule surgery when the patient has been sick, but she also gave me the option to reschedule or move forward based on how bad I feel.  I actually felt pretty good about halfway through today.  I get short of breath easily, but I’m rapidly gaining strength.  I feel like this is my time to be strong.  This is my time to dig deep and use the power of my body’s central operating system – my brain – and remember how robust my life force is when I think positively.  I remember how relatively easily I made it through my tonsillectomy 13 years ago.  I’ve made it through countless difficult physical situations simply by breathing, letting go, and understanding that it won’t last forever and all I have to do is make it through one moment at a time until I’m thriving.  Someone please remind me of this when I need it.

 

 
 

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Without fear, there can be no courage.

I had my pre-op appointment yesterday morning at 7 am. It was not a big deal, really. Just a bunch of different people asking me the same questions over and over, taking some blood work, giving an EKG, and some poking and prodding. As they were describing how the day of surgery would go, I got that cotton mouth feeling that I’ve only ever gotten a couple of times in my whole life due to sheer panic.

Given that I was in considerable pain the night before, I ended up with maybe an hour, possibly two, of sleep. On top of that, I’ve been under so much stress, riddled with fear and anxiety, that I wasn’t really as able to cope with things as well as I maybe should have been. One of the nurses who came in to ask me a bunch of questions, out of nowhere, offered up this statement.

“The thyroid gets blamed for so many things. I’m overweight, it must be my thyroid.”

…with the obvious sarcasm that no, if you’re overweight, it’s because you’re a lazy slob who eats doughnuts and pizza for breakfast…   So I couldn’t help but say to her (refined for the purpose of this blog):

“The body is so complicated that you never really can be sure, but as a person who’s lived in this body through the ups and downs of six years of unstable thyroid levels, I can tell you that it does indeed affect your weight.  When I came out of remission and went on tapazole again, it was like I got belly fat overnight.  It was the craziest thing.”

To which she said, dismissively, “yes, mhmm…” and went on about her business.  I squelched the urge to shout

“You know what lady…  do YOU have thyroid disease?  Have YOU ever lived through the highs and lows of thyroid levels?  Just because my levels look good to you doesn’t mean that you know what is normal for me.  A good medical professional listens to their patient, doesn’t just dismiss their input as irrelevant because the books you read are the end all and be all of thyroid fact.  There is a lot of controversy over the “normal” range being far too wide here in the U.S. and you don’t know shit about how in tune I am with my body or how much I’ve educated myself about my disease, so you can take your “yeah, mmhhmmm” attitude and shove it back to 1982, when I thought doctors – or in your case nurse’s – knew everything and there was no reason to question or participate in my own medical care.  If weight isn’t affected by thyroid, then why the shit is it on every list of symptoms to look for regarding thyroid disease?  Just Feck Off!”

This outrage was let loose in the car ride home in the form of a rant, which did not sit well with my company….   I just don’t know what to do with that rage, and if I let it fester, I’m bound to have a worse experience where I’m already having trouble focusing away from the fear.  I have read about and experienced a lot of this type of dismissal from medical professionals when seeking help and participating in my own treatment plan, and I refuse to believe that those people can provide better treatment than someone who listens to what I tell them is happening in my body.  I am not the majority who would rather bury their head in the sand and take a magic pill everyday.

Doctors simplify things for their patients, with good reason, but things are so complex and often times patients are not even made aware of treatment options other than the one the doctor prefers.  I happen to prefer to be in the know, even if it is a hundred times scarier.  At least I can make the decision that feels right to me and I will not be a victim of someone else’s priorities (i.e. pharmaceutical industry influence, insurance coverage, etc.).  I am fortunate that I found an endocrinologist who has been patient with me and allowed me to direct the course of my treatment because after some time, she realized I was a responsible patient.  I had to prove that to her, I understand that, but she also didn’t write me off immediately just because I didn’t go to school to be a doctor.

All of this is just a symptom of the real fear, though.  I feel like I’m under pressure to beat the clock.  I usually take it easy on myself when it comes to personal growth.  I realize that you can not force awareness or growth in yourself just as you can not force a flower to blossom.  That being said, I feel that if I don’t overcome this fear before my surgery next Tuesday, that all will go horribly wrong.  I desperately need to find peace before going under the knife, but if the last several days are any indication, that may not happen.  Perhaps the answer is to allow the fear to be there and be okay with it.  After all, courage is not the absence of fear, it is the ability to take action despite one’s fears.  There can be no courage without fear.  While I’m at it, here are some quotes I found demonstrating that feeling fear is part of having courage.

Courage is not the absence of fear, but rather the judgement that something else is more important than fear. ~Ambrose Redmoon

Courage is doing what you’re afraid to do.  There can be no courage unless you’re scared.  ~Edward Vernon Rickenbacker

Courage can’t see around corners, but goes around them anyway.  ~Mignon McLaughlin, The Neurotic’s Notebook, 1960

Fear and courage are brothers.  ~Proverb

Courage is not simply one of the virtues, but the form of every virtue at the testing point.  ~C.S. Lewis

Courage is the power to let go of the familiar.  ~Raymond Lindquist

To live with fear and not be afraid is the final test of maturity.  ~Edward Weeks  (I’m still afraid, mind you.)

Courage is knowing what not to fear.  ~Plato

Optimism is the foundation of courage.  ~Nicholas Murray Butler

Courage is being scared to death… and saddling up anyway.  ~John Wayne

Courage is almost a contradiction in terms.  It means a strong desire to live taking the form of readiness to die.  ~G.K. Chesterton

Courage is never to let your actions be influenced by your fears.  ~Arthur Koestler

Courage is a kind of salvation.  ~Plato

You can’t test courage cautiously.  ~Anne Dillard

I believe that courage is the sum of strength and wisdom.  You take away wisdom from the equation – courage may turn to rage.  ~Dodinsky

Thanks to http://www.quotegarden.com – from where I stole these quotes.

 

 
 

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Amalgam

This process so far has been surprising me left and right.  I’m very thankful for all the support I’ve been receiving through different avenues over the last few weeks.  Texts, emails, blog comments, phone calls, even hand written letters!  It’s given me a feeling like people are rallying around me, supporting me through this.  The surprising part is how alone I have begun to feel in all of this considering the massive support I’ve been receiving.

Wednesday, the fear started to set in.  I’ve been working on my self talk to get me through it and though I’m not where I want to be, I have faith that when the shart hits the fan, I’ll pull through like I always do.  It’s taking some serious, conscious effort to keep talking to myself and keep steering my focus.  Yesterday I started on Lugol’s solution – basically straight iodine, like the kind you’d use to disinfect topically – three drops, three times a day.  This is the stuff they give after radioactive fallout to protect the thyroid.  It’s also used, in my case, to prepare the thyroid for surgery.  It decreases the vascularity of the thyroid so that there is less bleeding during surgery.  It also blocks the thyroid from making thyroid hormone, so I figured I could expect to feel somewhat hypo, though I’m not sure if I’d feel it in a matter of ten days.

I started on it yesterday and the stomach upset was not too bad, but all of the sudden, while brushing my teeth, I had extreme sensitivity in several teeth.  One in particular.  A few years ago, my dentist noticed a dark spot on an x-ray at the base of one of my bottom front teeth.  She thought it indicated a dead or dying tooth and that I would need a root canal even after tapping and ice confirmed that the tooth was very much alive.  Fortunately, as I sat in the oral surgeon’s chair, he confirmed the viability of the tooth and sent me home saying I didn’t need one.  It must just be an anomaly and to keep an eye on it.  Well….  that’s the one that’s the most sensitive.  Being that one of the more worrying side effects is tooth/gum pain, I’m attributing this one to the Lugol’s.

The other side effects I’ve noticed so far are headaches at the base of my skull; metallic taste in my mouth; and mild stomach irritation.  I’m not prone to headaches, so when I got one shortly after taking my second dose last night at work, I was none too thrilled, though that wasn’t the worst effect.  For some reason I felt hyper symptoms within a short period after my second dose.  My hands were visibly shaky, my heart and respiratory rate went up, anxiety reared its ugly head and all I could do was keep working, breathing, pretend none of this was going on while presenting my happy face to the customers.  Fortunately it passed, the night ended, and now I have a day off.  It was such a surreal moment at one point.  I looked around, realizing that everyone was in their usual work pattern, probably feeling like it’s just another stressful night, nothing seems different.  To look at me, you’d probably think the same of me, unless you know me well.  No one had a clue what was happening behind the smile.  I felt so alone, strong, fragile, sad, powerful, scared, and vulnerable, all at the same time.

This is the part where the people who love me want to do everything they can to help, but they just can’t ease or maybe understand certain burdens. This part I have to do alone and be alone in my body as it endures this process.  As I write this, 40 minutes after taking my first dose, I can feel the back of my skull starting to ache.  I also began the lady pains something fierce yesterday, a uterine migraine, if you will.  So my whole lower abdominal region hurt; my lower back ached; my knees have been particularly painful lately, just squatting down – which I do a lot of in my job; the base of my skull felt tight and sharp and achy; my teeth hurt when I brush them; my fear comes in waves; and on top of that, my ability to care for myself seems to have halted.  I’ve been better.

Last week, I was having these cleaning urges.  I kept feeling like cleaning, organizing, purging useless clutter.  It felt like a really good sign of my internal status.  I cleaned out two closets, reorganized half of my soap room, cleaned out under the bed (half the stuff my cat put there), kept my bedroom, living room, kitchen quite free of daily clutter…  Then, on Wednesday, the fear struck and that all stopped.  My clothing from the last couple of days is strewn about the bedroom, my bed is left unmade, my sink is full of dishes.  It’s not disgusting yet, but if I don’t do something today, I’m going to feel pretty awful.  My pre-op appointment is at 7 a.m. tomorrow and I’d like to wake up to a clean home before that.

So, as part of my conscious effort to stay positive and focused.  As I end this post, I shall proceed immediately to the kitchen, where I will do my dishes, and from there, the clothing in the bedroom shall be put in its proper place and I shall clear my dining table of the debris its collected over the last few days.  You see?  I still have fear, I still feel alone, I still feel frozen and overwhelmed, but only until I say “enough already” and do something about it.  I’m still scared but I have to do only what I can do and then “let go all holds” and trust.

 
 

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F.E.A.R.

Fear is a powerful force.  It has its place, but often times if you give it an inch, it takes a 26.2 miles.  Fear, lately, has been an unwelcome house guest who is quickly overstaying her welcome and barging into my life at the most inappropriate moments.  She rears her head in the form of stress dreams; sudden, acute anxiety; digestive discomfort; emotional outbursts; crying over nothing.  Par example: Last Sunday I decided I hadn’t veged out in front of the tv in months, so I decided to sit back, drink my coffee and enjoy some mindless drivel.  I ended up flipping back and forth between Roadhouse (I don’t have cable) and one of the Big Mama movies where there’s a Mrs. Doubtfire scenario happening.  The farcical Big Mama and the kids become attached to each other and the goodbye at the end of the movie had my shedding a tear.  Oh Brooooother

Recently I received an email from my boyfriend’s brother who reminded me of something I’d heard somewhere before.  Fear can be put into perspective via acronym:

False Evidence Appearing Real or maybe False Expectations Appearing Real

Either way, I’ve been buggin’ out!  Lately, I can’t stop thinking about waking up during surgery.  Then, last night, I did the worst thing someone can do.  I googled it.  I found out it’s more common than I even thought.  I read people’s accounts of it happening to them, which somehow led to reading people’s horror stories of life after a Total Thyroidectomy.  I found myself on the very same page I remember reading that froze me to inaction last year when I thought I was ready for surgery.  I read about people gaining 25, 35, 75, 100 pounds after having their thyroid removed and claiming to have “normal” blood levels.

I could feel the fear spreading through my body.  There was actually a stream of tingling energy traveling through my body, animating particles and molecules and atoms, probably leading to inflammation or more belly fat or an aneurism or something…   See how it spirals?

All I could do was breathe.  I sent my brother an email and fortunately Anto called just in time to talk me down so I could go to bed.  I awoke feeling calm, but the fear definitely comes in waves.  I don’t want to plant an idea in my mind, as I know how powerful the mind can be.  This is very important to me and though I’ve been joking about it with people, I’m serious about having the right thoughts before surgery.

Here are the steps I’ve taken to correct this:

I went back and read the helpful emails of people’s positive experiences from people who have taken the initiative to be educated advocates for their own health.  I consider myself to be one and feel like that will contribute tremendously to a positive outcome.  One woman did not consider any of these fearful possibilities that I’ve read about as options for herself and I would like to get in alignment with that type of thinking.  Reading her words helps.

I have ordered books from my library about healing (spiritual/energy/etc.), prayer, conquering fear, and humor i.e. Mike Birbiglia’s Sleepwalk With Me.  Granted, I won’t be able to read them all before the surgery, but I’m surrounding myself with them before and after to keep my mind aimed towards the right direction or distracted by someone else’s comically written account of his own set of woes.  Hopefully from there my brain can pick up momentum and create these thoughts on its own.  Like giving myself constant, effective pep talks.

What do you do to counteract the fear that grips you when you have made a big decision or have to go through something in life that you’d rather not?  What skills have you acquired?  How do you cope?  What tools do you use to get yourself in the right frame of mind?  I’d love to hear your stories and your experiences.  I encourage you to share your own in a comment.

Thanks for “listening” …and sharing.

 

 

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Sometimes a pothole doesn’t result in a flat tire, it just shakes you up a little.

It’s funny when you’re looking out for bumps in the road, how you can completely miss a big ol’ pothole that jacks your sh*t up.

Maybe I only think this is funny because I live in the south or because I can mimic it really well…. and because there are some nasty potholes down here! And not just the metaphoric kind.

This remission junk has me all flustered.  I’ve been in remission once, it lasted a year.

Being hyperthyroid sucks.  The first time that led to my diagnosis was great, though.  I had loads of energy, I lost a few pounds, and I felt like I was always on allergy meds (read: speed).  Aside from these signs, the first noticeable abnormality was when a guy I was seeing mentioned that my heartbeat was twice as fast as his.  I dismissed it until my throat swelled and I freaked out and went to the doctor, was referred to an Endocrinologist, and went on anti-thyroid medication.  I didn’t think too much about it once things settled down.  The gravity of the diagnosis did not sink in until two years later when I came out of remission.  I didn’t fully understand what was going on in my body or what it meant to live with an autoimmune disease that would take such a toll on my body, mind, and relationships.

Looking back, even though it just felt like twenty-something melodrama, I had a lot of emotional turmoil that fluctuated with my levels.  Graves’ is associated with anger spells.  I had those.  “Graves’ rage”… I even lost a couple of friendships because of it, though I didn’t understand or forgive myself and them until recently.  Graves’ Disease often gets misdiagnosed as bi-polar disorder because you really do have those high highs and low lows.  I remember a Thanksgiving with my family in Boulder about four years ago and I had this spell of incredible anger/sadness/depression to the point where I thought living wasn’t such a gift.  Thankfully I made it through that, and it’s a place I never want to visit again.  At that point, I was on the same dose of AT’s and wasn’t having my blood work done regularly and I think my thyroid levels dipped too low.  I learned an important lesson and have gotten my levels checked regularly, every 6-8 weeks, since then.

When I came out of remission and went hyper for the second time, it wasn’t pretty.  It aged me about 8 years, instantly.  People have said to me “oh, at least you have the good one where you lose weight.”  …  get ready for an anger spell.  In fact, I did lose weight, but it was all lean body mass, muscle mass, cardiovascular strength, I lost a lot of the fatty tissue under the eyes, making me look like a crack whore.  When I went back on medication, I gained a good amount of fat on top of the muscle loss, I had belly fat overnight – which was something I never had all of my life, so my body composition has changed.  The average weight gain after 4 years from Graves’ Disease regardless of treatment method, is 25 pounds.  So, even though I fear weight gain after a thyroid removal, I’ve manged to keep my weight fluctuating within a range of about 10 pounds, so I suppose I’m doing alright so far.

Other fun side effects of being hyperthyroid include heat intolerance, shortness of breath from simple things such as speaking, fine muscle tremors, heart arrhythmia, and anxiety.  Right when I came out of my pseudo-remission, I tried working in fine dining.  Serving martinis and pouring wine were quite embarrassing.  I had a very noticeable tremor in my hands and was completely uncontrollable.  Guests must’ve thought I was hungover or ‘drying out’.  I’m sure I was judged, but I have a feeling I was being judged just because I was serving them in the first place.   Also, when speaking, which I had to do a lot of, I would run out of breath.  I tried to hide it, but it was as if I’d run a mile before speaking to each table.  We also had to wear jeans, a long sleeved, white button up, and a full body burlap type apron.  As you can imagine, Atlanta is quite warm in May.  The building where I worked was old, air conditioning leaked right out the walls, and forget it if I had a patio section.  I was a sweat ball.  I’m usually the person who is always cold, so this was a new thing for me and I felt like I was suffocating in my clothing.  I didn’t stay at that job for very long.  Also, it was a shitty place to work.

Fortunately, at the age of 19 I experienced a panic attack, which has enabled me to talk myself down from the hundreds of attacks I felt coming on over the last six years.  I know this is directly related to thyroid, because I don’t experience anxiety when my levels are normal.  I’ve been fine for months and months.  When they’re up, though, I’ve felt on the verge of one at work, behind the bar, in the middle of service; on the highway; anywhere it would make a scene, I’ve had to talk myself down from one.  Clearly, that makes genuine, friendly interaction difficult sometimes.  I’m pretty proud of myself for dealing with it through breathing and mental tools, but looking back, MAN is that exhausting.  I think most people would be on Valium, or whatever the patented, brand name anti-anxiety pill of the year is.  (Notice what I’m reading off to the right there, it’s heightened my skepticism of prescription medication.)

Relatively shortly into my relationship with my boyfriend, he surprised me with Ray LaMontagne tickets, which, even though I guessed and ruined the surprise, I was really, really excited about because I’d missed the opportunity to see him live a couple of times and I really like him.  Anthony had worked that day and so we decided to swing by Whole Foods and eat something before heading out to Chastain.  All of the sudden, at the hot bar in Whole Foods, I started having palpitations, like regular, frequent palpitations; unlike the occasional disturbance after exercising or something.  It was very scary, I was literally thinking “I don’t want to die yet, I have so much left to do” while staring at the napkin dispenser and trying to calm down.  Then, by the time things settled and we left for the show, we ended up arriving right at the intermission and were disappointed to find that we’d missed Ray and had to settle for David Gray.  I had to use my mental strength to appreciate what I had (David Gray and an awesome boyfriend who wasn’t my boyfriend yet) and not what I didn’t have (the experience of seeing Ray LaMontagne live).  Either way, I don’t want to put my heart in danger like that ever again.

These are all symptoms that subside once thyroid levels are brought down.  The problem is that the cardiovascular effects become more dangerous as I get older and levels don’t adjust the instant you take the pill.  It’s a long process to get the levels down.  The key to thyroid medication, whether supplementing or blocking, is consistency.  It takes a minimum of 6 weeks to see the effect of a dose, so it can take about a year to get both T4 and T3 into range.  That’s a long time to be dealing with symptoms like these.  I think I’ve had enough of those wild swings.  It’s very disruptive and damaging and after 6 years, I’m looking for some stability.

As many fears as I have concerning this surgery, the one real hope it offers me is a chance at stability.  I recognize that it might be a rough go at first, trying to find the right levels, I may not feel right for quite some time.  I might not ever feel right.  I don’t even feel right, right now.  My levels are so low that I’ve been experiencing hypothyroid symptoms.  Depression, tiredness, lack of energy – I have to force myself to go out for a run and when I do, it’s like I’m running through three feet of water.  Only a few months ago, might I remind you, I came in 3rd in my age group for the Thanksgiving 5K and craved going out for a run.  It’s a stark difference in how I feel with a reduction in my thyroid levels.  My muscles just feel like they’re not getting what they need to work.  It’s a strange feeling, unlike losing fitness from being inactive.  It’s a very strange feeling.  I also have had a little bit of depression, which I don’t like at all, but when I can recognize these as physical symptoms from low thyroid, it helps me to not identify with it and therefore not beat myself up or think something is wrong with me, other than a stupid autoimmune disease.

My hope is, once I find an optimal dose of thyroid hormone after surgery, that I can take those wide swings out of the equation and get on with my life.  It’s taken a lot of mental energy for me to try to maintain any sort of homeostasis, and in fact, mostly I have to fake it to trick myself into feeling balanced.  There’s no denying that I am at the mercy of numbers, but I have a certain element of control if only in the perspective I choose to view my circumstance.  It’s tough in the moment when things are out of whack, and it’s a lot easier to look upon my experience with normal levels of thyroid hormone in my bloodstream.  I’ve made this decision with a level head and maintain my decision.

I don’t want to let this surgery creep up on me while I’m waiting and seeing.  I want to actively move towards it with intention.  Participate, not let it happen to me.  That’s very important in avoiding regret.  I have to approach this with the intention that it is my choice.  I’ll never be 100% sure that my decision is the right decision, and that’s what has kept me from making this decision.  I have to move forward with the attitude that I’m moving forward.  I do not have the option to look back after the surgery, and though I can still cancel it in the next 26 days, I have to take that perspective now.  There are several very good reasons why I have made this decision that don’t really change according to my latest lab values.  I am still scared.  Very scared.  So scared that I have been writing letters to the people I love, just in case….  But I’m moving through this fear and it could be the best thing I ever do.

Maybe it’s all just a big hoax to trick me into thinking I have control of my destiny, but I’ll leave that discussion up to the philosophers of yore and Stephen Hawking, and I’ll just focus on my perspective.

 
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Posted by on February 24, 2012 in Graves' Disease, Total Thyroidectomy

 

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