Chapter 6: The Unthinkable

I was still reeling from seeing the stark reality of my illness in a three way mirror, but life needed to go on. I was still a wife, a mother, a daughter, an employee. I wanted as little of my life to change as possible. I needed the comfort of my usual routine. I needed to know that this disease was not going to affect my entire life. I did continue to work, only because I have the uncommon good luck of working for two incredibly realistic and understanding people. Of course my work load had to change, but at least I could still retain that familiar part of myself. I will be forever grateful to them for that.

As women, we feel as though we need to be invincible - all things to all people. I’m here to tell you, this is the time to be selfish. Actually, selfish is a bad word because it has all kinds of negative connotations associated with it. Maybe self centered is a better term. Well, that doesn’t really sound good either. Anyway, the point is, you need to focus on yourself. Let’s call it “self-focused” then. I don’t mean that you get to the point that you exclude the wants and needs of the loved ones in your life. What I mean, is that you shift your focus. You may need to have food in the house that they don’t want to eat. Too bad, they will adjust. If they don’t want to eat it, they can prepare their own while you make yours. You may need to take a nap when they feel like going out. Too bad, let them go without you. You may need to delegate some responsibilities. Oh well, it’s character building. You may be invited to family gatherings that you just don’t feel you have the physical or emotional endurance for. You’re allowed to say no. Now, keep in mind there is no need to be obnoxious about all this. I’m just trying to illustrate a shift in focus to concentrating on the things you need to get healthier. It may be the first time in your life that you begin to think this way, but it is absolutely necessary for your success at overcoming the effects of an autoimmune disorder.

It was around this time, shortly before my birthday, that I had another appointment with the endocrinologist. My visits were now going to be two months apart, so it had been eight weeks since I saw her last. I had started my Paleo diet, was taking a small amount of vitamins and supplements, and was drinking my Ensure. I was still extremely thin, but I decided after my episode with the mirror that I was no longer going to weigh myself.  I knew I was underweight, and that was enough. I didn’t need to obsess about the number. My blood pressure and pulse were under control, and I was shaking much less. During my appointment I was informed that my hormone levels had shifted from 35 times normal to almost below normal. Extreme to say the least. My doctor was pleased with how I was doing, except for the weight, and decided it was OK for me to discontinue the cardiac medication. A step in the right direction! One down, one to go! I felt great about it. I also felt great about what I had started to do for myself with my diet and nutrition. I took this as a sign to keep going. Keep going. It can only get better from here!

Until shortly before my birthday. The unthinkable.

Now, I have to preface this by saying that as a nurse, and even just as a patient in general, I should have known better. I assumed my doctor had told me everything I really needed to know about my medications. All I ever heard was liver toxicity. When I picked up my prescriptions at the pharmacy months before I was diligent and read everything on the little pamphlets that came with them. The cardiac medication I was pretty familiar with because I have seen so many patients on it. The methimazole, however, was another story. So I read that pamphlet very carefully, including the list of side effects. But what I dismissed as “that’ll never happen”, actually happened. Remember, prior to this I had always been healthy, so I was arrogant in my thinking. Take it from me, even though you will read “other side effects are rare but may include….” , you must assume that you will be the one person to experience a rare side effect. Go through the entire list, all the way down to the one on the bottom. That’s where mine was. Dead last. You need to be mentally prepared just in case.

So here I was, right before my birthday, in my mid forties, in what should be the prime of my life, with drastic weight loss, constant exhaustion, tremors, self confidence issues, battling a chronic illness, struggling to keep my life going, trying to understand the meaning of it all…..when one morning in the shower my hair began falling out….in chunks.

My long, blonde, soft, shiny hair that my son always says smells like apples…the one thing I ever really liked about how I looked, was disappearing down the drain. I stood there in the shower, speechless. No…maybe it was just a fluke. I’ll rinse my head again. Big mistake. It pulled away from my scalp as if it was never even attached in the first place. A whole new low. I can’t take it any more. And once again, I cried.

I immediately called my doctor’s office. What was going on with my body? How bad will it get? Will I go completely bald? What can I do? The covering doctor, although very kind, was not very helpful. His answer: “There is really nothing we can do. If you come to the office I can give you a prescription for Rogaine.”

Another drug? No thanks.

I hung up the phone and was left alone with the fact that I may now lose all my hair. It was sudden. It was unexpected. It was one of the worst things I could have imagined for myself at that time. And there was no stopping it. The despair was indescribable.

Life Lesson #6 - Always read the fine print.

Graves Disease Lesson #6 - Not only is hair loss a possible side effect of methimazole, but it can also result from an extreme shift in thyroid hormone levels. The hair loss may not just be limited to your head. You may also lose eyelashes and eyebrows.

- Dorian A., RN, CHLC

  www.BioEnergyAromatherapy.com