autoimmune, part 2

Wednesday, October 17, 2012

This week, I’m chronicling some of my battle with a chronic illness. You can catch part 1 here, where I explain a little bit of why I’m writing this and why it may not seem as congruous as it should.

…The first thing that had to be done was attempt to manage most of the symptoms with medication. Actually, the first thing they wanted to do was permanently treat the disease – meaning they would give me a radioactive iodine that would kill off (ideally) enough of the thyroid that it would function normally. I was resistant to a permanent option; I had read about remission, and I was determined that was how things were going to work for me. So we did ‘maintenance’ meds. Meds to regulate my heart rate, meds to regulate my thyroid, meds to reduce my anxiety, a couple of other medications that I can’t for the life of me remember.

I spent most of that first year on the couch. Literally. Lying on the couch for hours on end. The fatigue was debilitating. I got up late (thankfully I had some late sleepers at that point), got the kids dressed and fed, then laid on the couch. Turned on the TV, Nick Jr. and PBS all morning long, the toddler tucked into the crook of my legs so that I could sleep and still know if she got down from the couch. Ben learned early on how to get himself and Maggie breakfast and snacks when I couldn’t get up.

When my husband came home, I was still lying down. He cleaned, he took care of children, he cooked. He went to work. He got little sleep. He picked up all the slack when I had nothing to give. It was overwhelming and exhausting for him. He made our family function when it was on the edge of falling completely apart. I wish we had been more honest about this part of our lives. I just felt like there wasn’t anything anybody could do for me. I was embarrassed that we needed help. I was ashamed that I couldn’t get off the couch. All of those things were true. The thing I was forgetting: the help wouldn’t have been for me. It would’ve been for him. But we didn’t ask. He did everything, and he didn’t complain about how hard it was.

Anxiety ran high. If I dug my fingernails into my palms, again and again and again, I didn’t feel so out of control. I didn’t have any desire to self-harm, but I did develop a new understanding for people who do. It’s just that small part of your life that you can control. I remember my dad driving me to my first endocrinologist appointment, and all I could do all the way there was clench and unclench my fists over and over again.

I took meds. Three times a day, four times a day, pill after pill after pill. Calm my racing heart, calm my frazzled nerves. Anti-thyroid medications, beta blockers, anti-anxiety meds, herbs to help combat depression, vitamins, fish oil, I tried so many different things in a desperate attempt to ‘naturally’ manage this whole thing.

When they told me they would prefer I not get pregnant, I asked them for the meds that would be safest just in case. Not quite ready to say no more, yet ready enough to not fight against it too hard. After a certain point, I was just too sick to care. I’m sure part of the reason they allowed me the fantasy is because they knew I was unlikely to get pregnant while I was so sick anyway. I wasn’t that fertile even when I was healthy, we had already talked about adoption for the rest of our family, but something about being told you ‘shouldn’t’ do something makes you reluctant to agree.

I had my blood drawn. And drawn again and drawn again. Measuring thyroid hormones, measuring liver function and blood count (the meds make you more susceptible to liver failure and low white blood cells, increasing risk of infections), attempting to make sure that my body was working as well as it could under the circumstances. I had been queasy around needles, but after close to three years of blood work every 4-6 weeks makes you a little more at ease. I took my kids to the lab with me; they became intimately familiar with the smell of alcohol, the sight of needles, and watching blood pour from their mother’s arm.

When my hair turned greasy, fell out by the handful, when I could see the thinning spots on my scalp and the bald spots on my eyebrows, I just colored it in with pencil and tried to wash my hair as often as possible.

When the thought of going to a reunion for the weekend, packing, socializing, travelling reduced me to a crying, out of control wreck of anxiety, my husband called his family last minute and told them we couldn’t come.

I didn’t get to reap the more popular side effects of Grave’s. Increased energy? Try everlasting exhaustion combined with constant insomnia. Weight loss? The opposite. Grave’s causes increased appetite, and my metabolism didn’t kick into high gear like it typically does with hyperthyroidism.

I battled depression, anxiety attacks, heart palpitations, intestinal difficulties, and acne. I got hives with regularity. Extreme sensitivity to heat. Infrequent menstrual cycles. Non-existent libido. Unexplained rashes. Difficulty with focused thinking. Poor memory. Dozens of tiny symptoms, most of them not at all bad on their own, but dealing with thing after thing after thing wears a person down.

Praying for healing, praying for remission, praying for relief became part of my daily schedule. I desperately clung to medication that merely attempted to manage symptoms, knowing there was a more permanent course of action to take, yet unwilling to go there for more than a year.

I finally decided to do the treatment that would kill off my overactive thyroid. Even then I pushed, asked for a significantly smaller dose of radiation than the doctor recommended. I decided I’d rather do it twice than to overshoot it the first time. I knew what killing off too much would mean: hypothyroidism, making me dependent on medication for the rest of my life.

Ironically, even that bit of control I pushed for was taken away from me. The smaller dose killed off a huge part of my thyroid. It would be months before we finally increased the dose of artificial thyroid hormone enough to make up for what my thyroid was no longer producing. I ended up being on one of the highest doses of Synthroid my endocrinologist had ever prescribed.


This post only begins to touch on the day-to-day of living with a chronic illness, and the emotional and mental processing of all of this is yet to come…back tomorrow.

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