Learning to find “normal” My internal struggle living with an auto immune disease.

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My first post surgery Selfie many moons ago.

February 21st marks the five year anniversary of my Thyroid removal, but not the end of the saga I thought it would be five years ago. I was diagnosed with Graves disease (over active thyroid) and Thyroid eye disease in October of 2011 after years of Panic attacks, weight loss, and feeling like I lived on the brink of insanity some days. Though it seems dramatic I seem to remember a six month period of little to no eating or sleeping, just constant itching like I was being eaten alive. I would take nyquil and the pill would get stuck until it dissolved enough to clear my throat. ( I now know that is because my thyroid was so large it impeded swallowing.) This was the worst of times and a diagnosis seemed like all the answers to all of my questions. There was hope that my hands would stop shaking, and that I may be “normal” again soon! So into Surgery I flew, all in, 110%. No second opinions and no other options (according to the first opinion.)

The surgery felt quick, I was surrounded by family and loved ones, Matt (at the time my boyfriend.) was a CNA in the Intensive care unit and he took two weeks off to be my personal care giver. I thought I was made. However, recovery was scary and I did not look at myself in the mirror for at least the first week. Even worse, the Anesthesia made me ill and vomiting with a neck incision is a new level of hell. The incision became infected and was not closing properly, resulting in a Frankenstein scar i still sport today.

The following months were an emotional roller coaster as I learned to have a new normal with a much lower hormone level than I was used to, planned a beautiful wedding and learned we were expecting Lucy. All positive things however my new normal came with a dependency problem. I now had a doctor who kept me on the lowest possible level of thyroid hormone I’ve ever had, and when I begged him to help me as I packed on 80 pounds in a matter of months his answer was “you should try weight watchers”. This weight and worry led to a scary first pregnancy and bed rest. When i delivered Lucy I weighed just shy of 300 pounds.

After Lucy I sought to find a new doctor to monitor my levels and by a stroke of luck was recommended to my current specialist, who increased my medication IMMEDIATELY!

Nearly Four years later, and we are here. My Thyroid-iversary, Just last week I received a letter from my specialist that my levels needed lowered and I was not ready to go to yearly check ups. I broke down in tears. My quick fix has never been quick. This is where the learning is coming in. As I sat and cried explaining to my husband that “I just want to be healthy, ‘normal’, I don’t want to be sick.” He said something that in the last 5 years had been said but never; when or how I needed to hear it. “This will be your ‘normal’ for the rest of your life, Unless someone creates a bionic Thyroid, you will need a doctor and blood tests forever. A change in dose is not because you did anything wrong, if you had a thyroid that worked properly it would adjust it’s own dose everyday.” Smart man, am i right?

So here is what I am learning.

-There is no “normal” and comparing or assuming that you know someone “normal” is wrong. We are all battling something that we don’t want anyone to find out about. Or that we down play, or aren’t proud of .

-Give yourself a break! ugh, this life is so hard, in different ways for everyone (some people worse than others) but this ish is never ending.

– Give others a break, you have absolutely no idea what shaped the person in front of you, what chip they may have on their shoulder that has nothing to do with you. No clue of the battle they are fighting, So be an olive branch a bright smile in their dark day.

– Love deeper and give thanks, If you have a husband like mine, or friends who have stayed by your side while you raged or ugly cried and have not turned and ran yet. Hold them dearer and be ready to be the shoulder they need someday. Be open to not always being the hot mess (in my case).

– If you are living with an illness give yourself grace and sit with that heartbreak, own it, learn in, lean in. Because it is so much more welcoming to say. ” I am so broken and I don’t know why, You (spouse, friend, child) have done nothing wrong. I need (a hug, a nap, i really don’t know just a minute alone)” and you can only get to that place if you stop fighting yourself first. It won’t be easy and it won’t be every time, but you will get there.

– Life is messy, but it is worth it.

So for my anniversary I ask, that at your next check up please have your thyroid tested, had I been diagnosed five, three even one year earlier would have been one more year toward healing.

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