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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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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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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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Quick update…

I’m getting an ultrasound of my thyroid in the morning.  I meant to post the schedule of events leading up to the surgery.  I’ll do that in the next couple of days.  The surgeon wants to get a 3-D image of my thyroid so he can see what he’s dealing with.  I’m sort of looking forward to it since it’s non-invasive and I’m curious to see exactly how big it is. Mainly for my own weird obsession with knowing quantifiable facts regarding my current condition.  I like math and puzzles.  It’s probably related to that.  It will also be an exercise in humility, as I’m always aiming to distract from my neck and I’ll have my boyfriend in the room while they are focusing on it.  It’s good character building exercise and it’s my last few chances to do it with my thyroid, so I’m taking full advantage.  I don’t want to maintain the “get rid of this thing” attitude.  I want to send it off lovingly and with my own brand of integrity.

I was planning on inserting a hilarious clip of 30 Rock character Tracy Jordan singing “My girl has a fat neck”  or   “Fat neck girl…  let me count your neck rings”   …you’ll have to appreciate from memory or pass it off as dumb if you are not a fan or watcher of the show.

 

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Pivotal moment, achieved.

I’ve made a BIG decision.  I’ve decided to finally have my thyroid removed.  I’d considered it a year ago, but somehow just backed off from actually taking steps toward surgery.  I am still scared, but somehow I keep taking steps.  I’ve spoken to work about it and most recently, I sent this letter out to friends, family, and otherwise important people in my process:

Hello All.  Some of you are very close to me, some are friends with whom I’ve kept in scarce touch but hold dear, others still are people I may have never met in person, but either share the thyroid/autoimmune burden with you or have simply shared with you the story of my own.  Wherever you fit into this spectrum of people, you all have had an impact on me even if it’s simply that I think you are an awesome person with a great sense of humor (Kim) and cared to include you in my support network.  I hope you’ll read on and participate in whatever way suits you in this very big step that I’m about to take.

The short story is, I’ve been living with Graves’ Disease for nearly six years.  I’ve tried and tried to will myself into lasting remission and ultimate health, but I feel my DNA has stacked the odds against me and I’ve made a big decision regarding my treatment.  So far I’ve been able to get my thyroid hormone levels under control with Anti-thyroid meds, but my thyroid stimulating hormone is still non-existent.  I feel I’ve reached the end of this long battle and am ready for a different method of care.  I wish I could’ve had all the resources in the world available to me upon diagnosis so that maybe I could’ve done more in the early stages to get this monster to retreat, however that is not how things have played out.  I am finally ready, terrified, but ready to schedule the removal of my thyroid.
I won’t get into all the reasons why in this email.  If you’re interested, I’d be glad to share.  Ultimately, I had to wait until I was ready and that moment occurred a couple of weeks ago when for the first time, I experienced relief and a burden being lifted at the thought of total thyroidectomy.  Granted, this will render me unable to sustain life without medication for the rest of my life, but things are sort of that way as it is.  Were I to stop my meds, I’d just go in a different way.  I’m scared, but I’ve always been scared of this surgery.  The difference now is that I continue to take steps toward this surgery even though the gremlin in my brain is holding onto my thyroid with its heels dug in the sand.  I allow him to hold on, yet I still move forward.
I am in the beautiful state of Colorado currently, visiting my 8 month old niece with the cutest, chubbiest cheeks you’ve ever seen.  It is my intention when I return to Atlanta to make an appointment with Colin J. Weber – to schedule my surgery.  I don’t know how far out I’ll have to wait, but I’m hoping for the end of February.  This particular surgeon is Chief of Endocrine Surgery and personally emailed me back when I emailed him over a year ago asking for his stats.  He’s performed over 4,500 thyroid surgeries with 6 nerve injuries.  He performs about 275 thyroid surgeries per year.  You can read more about him here:  http://www.surgery.emory.edu/about-us/faculty_directory/faculty_profile_collin_weber.html
I am reaching out to all of you for support.  Some of you I may lean on heavily, others, I hope that you’ll keep me in your thoughts often and send me some positive thoughts or energy; whatever feels right to you.  Often when someone asks me for support, I ask them to define it for me, as different people find different things supportive.  Specifically to me, some examples of ways you can offer me support that I would find helpful include but are not limited to:
  • a phone call or text to let me know you’re thinking of me or wishing me well
  • sharing a story with me about someone you know who has had a positive experience with thyroid removal (this is a BIG one)
  • asking questions that might help you or someone you know who is struggling with thyroid disease (it’s common) – feeling helpful to others as a result of my own struggles is also very positive for me.
  • an email telling me about what is going on in your life or just a quick note, as long as it’s genuine, the subject matter is not important, it’s the connection.
  • anything specific to our relationship that you think may be helpful or supportive
  • sharing vegetables from your garden with me, perhaps over coffee (decaf for me)
  • anything involving connection and cultivating positive, calming energy.
  • a hilarious email about the minutia of life (Kim, Milana, Jimi)
I’m sure you get the idea….
So, I’ll leave it there and hope that many of you will show up along the way in this journey that I ultimately have to take on my own.
I plan to provide details of my experience in two places.  On Daily Strength, where you may have to create an account to follow my posts:
  • If you’re interested on connecting with me on daily strength, please reply and let me know and I’ll send you an invitation to make it as easy for you as possible.
Also, I hope to be posting here:
a blog that I’ve neglected quite a bit, but hope to revive as quantitative details provide a platform on which to contemplate, expand, and share my experiences, thoughts, emotions, etc. with others in the hopes of making meaningful connections that help to heal and also to hopefully serve as a positive example in the thicket of horror stories that are out there on the internetz.
Thank you for reading all or part of this, or even opening the email and scanning it…   when you feel like it, I hope you’ll reach back.
Love & Laughter,
Kat
Of course I am inclined to avoid the dismantling of my body, but the truth is, it’s already made the choice for me.  For a long time, the better choice for me was to keep the gland and take poison medication to control the condition and the dangerous roller coaster ride of symptoms that would eventually kill me if not for pharmaceutical intervention.  There are several logical factors that led to this decision, but ultimately it just had to be that mental shift that cannot be forced.
Anytime I have faced a decision to let go of something that’s been a big part of my life – usually a relationship – I’ve spent a long time making sure I was absolutely sure because I aside from difficulty in letting go of people, emotions, ideals, etc. without a mental struggle; I rarely look back once I’ve come to a decision and look to avoid regret.  I think that method will serve me well in this instance.
One of the things I had to let go of in this process was an idea.  For a long time, I clung to the idea that an act so severe as the removal of one’s thyroid should not be based on such superficial platforms as cosmetic appearance or financial resources.  However, I am comfortable with the fact that those are my two main motivating factors in this decision.  I only accepted that after my brain shifted.  My logical reasons are as follows:
  • cosmetic:  plain and simple, I’d rather have a scar than a goiter.
  • financial:  it’s just realistic.  I have to get my labs done every 8 weeks and see the Endocrinologist (who is lenient with me regarding appointments) every other time I have my labs done.  With my current insurance, my lab work is covered.  I receive 6 office visits per year at a $40 co-pay, and my deductible is $10,000.  Like everyone else, my premium saw a dramatic increase in price and I am now paying just under $300/month for this skimpy coverage.
  • also financial:  other insurance plans I’ve looked into would not exclude me with a pre-existing condition, however the labs would only be covered up to $400/year, leaving me with the rest to pay out of pocket.  The deductible would be $3500 with $60 specialist visits.  If I only had to get my labs done once or twice a year once I find a dose that’s somewhat stable, it’s a more sustainable way to receive care.
  • risk of thyroid storm:  under my current method of care, as long as I still have my thyroid, I’m at risk for thyroid storm.  This is fatal unless immediate medical attention is received, which is the main reason I get nervous on airplanes and certain other situations in which it would be difficult to get immediate medical care.
  • cardiovascular risk: with the inevitable fluctuation of my thyroid levels – when they’ve gone up, I have experienced arrhythmia and anxiety.  As a person gets older, this is much more dangerous, as does surgery.
  • athletics & muscle wasting:  with each rise in levels, I lose more muscle tissue and it has become more and more difficult to rebuild that muscle.  I’m hoping that I can find some balance that will allow me to pursue the activities I love for the rest of my life without having to start from the beginning again.
  • weight:  ironically, one of the reasons I was scared of the surgery is the stories of dramatic weight gain.  However, I have experienced weight, specifically stomach fat gain that appears virtually overnight once I start on a higher dose of medication.  People say it’s age related, but that’s the last place I put fat on and belly fat actually functions as an endocrine organ!  So I’m hoping some long term regulation will allow me freedom from the fluctuating appetite and fat distribution that seem to be a direct result of thyroid disease.

I suppose I could go on, but those seem to be enough for me now and I feel pretty good about this decision.  I feel like I’ll have some relief.  I think connecting to people who have positive stories over a year out from surgery have really helped.  One woman, the main story I’m clinging to, is a year older than me, lost her methimazole weight and is now 7 months pregnant.  (methimazole is the medication I am on and is known as an ATD antithyroid med).

Please feel free to comment with words of support or questions if you or someone you love is living with thyroid disease.

 
 

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