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Complications of a delayed surgery.

Woke up this morning feeling pretty depressed.  I haven’t had a good run or bit of exercise since last Wednesday.  Between this cold and a pollen count of over 9,000 (extremely high considered to be >500) the one gentle walk I’ve taken to try and get my system moving probably swept more junk into my lungs than it expelled out.

I also woke up from a dream in which my boyfriend angrily yelled at me to not be frustrated (which, literally, does not happen in real life) and thinking about my work situation.  I’ve been saving money for the last few months because I knew I’d have this time off, so it’s not like I won’t be able to pay my bills, it’s just that it looks like I’m not going to be working for the better part of a month.  Thus using twice as much of my savings as I originally thought I’d need, thanks to this glorious f*@%ing cold that already kept me from working last Saturday.  Once again, I’m going to have to overlook the negative aspect (the financial), appreciate that my health is the priority, and look at the positive: some unexpected time off while I’m up and about.  Time with my Mom, who I so seldom get to see.  And who knows, maybe I’ll even get to go to the cabin in the woods for those two nights next week if no one asks me to work for them.

So, I sit here drinking some reheated coffee that is too sweet and too old, but it is good.  I was without it for a few days and with the blood supply being cut off to my thyroid, it’s a little piece of heaven right now.  I think what the body and mind need today is a good, long walk.  Maybe I can even try a run in a few days after it (hopefully) rains and my lungs are clear.  Today though, a drive out to the park for a good, long walk in the woods sounds like it should lift this cloud that surrounds me.

More good news…  the swelling at the first I.V. site from yesterday where the nurse exploded my vein is much better.  When I took the bandages off last night, I had expected bruising, but I also had some serious swelling which I found surprising.  It is now only slightly puffy, and I can hang my arm normally by my side without any pain.  I still have some purple writing below my neck, but considering what’s come so far and what’s to come soon, who gives a flying rat?  You could also surmise this to be my attitude if you’d seen my hair, face, and clothing through the rest of the day yesterday and this morning.  Sometimes other things are more important.  and I’m okay flopping about for a day or two like a ragamuffin.

Operation cloud raise today will consist of coffee (which I’m currently placing in action), a good 5 mile walk in the sunshine, a shower, a load of laundry, and a few chapters of Mike Birbiglia’s Sleepwalk With Me.  Then if that gets it halfway up, maybe making a batch of soap would finish it off.  Wish me luck, ’cause this cloud is thick as the morning fog in San Francisco Bay.

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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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Film Degree Comes In Handy For First Time In Decade.

Monday has been careening towards me like one of those dolly zoom shots in the movies…

I somehow manage to keep this distance in my mind while emotionally connected and even, dare I say, looking forward to my appointment.  Tomorrow will not be particularly eventful on the physical plane, but tomorrow I set the date.  It’s when the lingering possibility of the future becomes defined.  The countdown to the end of this way of life begins.  Though I feel mostly hopeful and optimistic, even excited, there remains some ambivalence.  This week has seen me through a few seemingly unexplained mood swings.

One day I found myself to be quite grumpy and irritable, though I hadn’t been conscious of it until I opened my mouth and heard the tone I had towards my Mom.  It was a short conversation, I apologized, explained, and thought better of interacting with anyone until necessary.  On another occasion, I couldn’t shake the mental fog surrounding me at work.  It’s unusual that I can’t shake it at some point during the evening.  This time it just lingered.  A few days ago, I had my first moment of genuine excitement.  It blindsided me, though I was grateful for the feeling.  I’ve spent enough time feeling fear and helplessness, it’s quite time for hope and action.

My version of action and participation are small actions that I can take to help ease myself into my new life before the stark shift that will occur with surgery.  Every time I put my hair back and feel self conscious about the lump in my throat, I instead imagine a scar there and try to place myself in the feeling of “after”.  Anything I can do to mitigate the shock of one day having my thyroid and the next, not, is constructive.  I plan to prepare myself as much as possible, participate in any way I can to receive my new way of life.

One thing I know is that there was a grieving process upon diagnosis and I can tell that another has begun upon taking real action with this new decision.  That in mind, the mood shifts I’ve been having this week seem more predictable than inexplicable.  So, tomorrow, I plan to go to the appointment; take some time to absorb and reflect; take a walk with my boyfriend; take the day as it comes and the emotions as they come.  Tomorrow will be all about relaxing, loving, laughing, and being grateful for life as I know it, for even if I wasn’t scheduling surgery, there are no guarantees, and life as you know it can change in an instant.  I plan to be thankful for the chance to prepare for the unknown.

 
 

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