My name is Kat. I’m 34. I work as a bartender, but desperately yearn to do something more meaningful and more daytime oriented. I am smart and pretty, though slightly deformed and aging; I’m in a relationship with the love of my life; I make soap; I love to ride my bicycle, hike, camp, or anything outdoors; I struggle with body image; I live in Atlanta but feel my home is in Colorado, I have a 4 month old niece who lives there. My favorite thing in the world is to laugh. I could tell you more, but who could ever put the complexities of a person into words, effectively?
Part of the reason I started this blog was to shed the shame I’d been feeling due to certain symptoms of
Graves’ Disease Gaylord Gary’s Rainbow Disorder. But the other was in the hopes of connecting to people with my specific and apparently rare situation. In the past five years, I’ve searched the depths of the internet; found a single, local support group; been met with disappointment… Most of the information out there is geared towards people who are hypothyroid either from Hashimoto’s or post RAI/surgery for those with Graves’ or Thyroid Cancer. There is not much material out there for those of us who choose long term ATD treatment. I’d feel safe in saying that half of the Endocrinologists in this country won’t support the patient who leans toward ATD meds, pressuring them towards a more “definitive” treatment; while the other half don’t even inform their patients that ATDs exist.
I was struck by a comment on a previous post by someone who feels like they’re a stubborn hold-out a year into treatment. My dear, there is no reason for you to feel this way, and my guess is that when you do, it’s because your doctor prefers another option. The generally accepted time line for remission after ATDs is between 6-18 months. So you’re well within range. It may be that at 18ish months, you’re advised to go off meds, but you still only know your progress 6-8 weeks at a time. I achieved remission for over a year after my first course of treatment that lasted about a year and a half. Also, you want to talk stubborn hold-outs… I’ve been on ATDs for four of the five and a half years since I was diagnosed. I don’t necessarily think this is the best course of action for everybody, but it’s the right one for me and I absolutely, 100% refuse to let any professional pressure me into doing something before I’m ready, especially something of this magnitude. It may end up that I get surgery, but when the time is right, I’ll know it, and it won’t have anything to do with what someone else tells me. Any medical professional in my eyes is not fulfilling their oath to “first do no harm” by not listening to or respecting their patients who live in the bodies they’re altering.
Granted, I know there are a lot of people in this country who have been raised with the mentality that you just take a pill for your ailment rather than take some responsibility to do all they can to contribute to their own total health and well-being. I am not one of those people, but I used to be. I think this may be where some of the doctors are coming from. But in turn, I think they miss a LOT of people who know their bodies, who listen to their bodies, and who trust that their bodies are complex miracles that can do amazing things if given half the chance. I also realize that there are people who tirelessly read, research, and take action, but are just met with frustration. It makes me think of a book I read after my second flare of hyperthyroidism, called Coyote Healing, written by a medical doctor who is also a Native American healer. In it, he tells stories of people he’d worked with in an attempt to heal physically, spiritually and emotionally. Many of these people who had experienced such terrible degeneration of their bodies did not heal physically and died from their condition. However, by the time they died, they had healed. Healing isn’t always about the body being “fixed”, but sometimes the only thing you can heal is the emotional and spiritual component. This is what I’m looking to do, at least, though I don’t necessarily know the way. Intuitively, I feel that connecting with others in my narrow experience of thyroid disease is the first step.
With this in mind, please, if you feel like reaching out, do so. I believe you can email me through this blog. If I’m wrong, let me know.