In the 5+ years since I was diagnosed with Graves’ Disease, I have done a LOT of searching on the internet. Sometimes looking for pseudo-factual information, but mostly looking for people with whom I can relate to or be inspired by, but those attempts had failed. I tried joining a couple of different message board/online support groups and while they are filled with many people looking to connect and tell their story, it’s still online. I don’t find this medium to be very comforting. Although also an online forum, I find individual blogs to be more intimate. Until now, a majority of what I’ve found fall into two categories that render their posts irrelevant in my eyes.
The first category consists of well written blog posts, but they usually deal with issues of hypothyroidism post-RAI treatment. Many times these individuals have been prescribed RAI almost immediately upon diagnosis, without much experience of being on ATDs. They are usually struggling with weight gain, fatigue, hair loss, depression, and/or Thyroid Eye Disease. While I do have my own body issues and mood swings, I feel happy and lucky to report that I don’t have any major eye issues, save for some transient hours of feeling like I can’t relax my eyelids after ingesting a bit of caffeine. In short, I lose interest quickly when I don’t see any similarity in the course of treatment or symptoms I experience. It’s difficult to find people who still have a living thyroid as I am still with thyroid, though taking meds to suppress it. I mentioned in my last post that my current area of concern regarding my thyroid is the visible enlargement of it. I guess if I went ahead and had the surgery, I would have no shortage of people to share stories with, but as I also explained in my last post, I’m not ready.
In the second category, we have a lot of garbled blog posts featuring verbose accounts of their day; their personal drama, sans context; their current scrapbook theme; or their lab numbers. As you may notice, I have and will continue to post my lab numbers, as I am obsessed with them. I want to be able to reference how I’m feeling when my levels are at certain points so I can look back and see if what I’m experiencing is “normal” according to my previous experience. It’s really about as useful as using a knitting needle to spread butter, but it’s the only way I feel like I’m taking an active role in my disease, by tracking it.
Behold, I’m happy to announce a third category. People who write with humor to offset, yet not deny the plethora of emotions this disease incites. Where have you been the last five years of my life? Last week, I googled images of goiter. I’m not exactly sure why, because all that does is generate anxiety. However, I stumbled upon a picture of a woman who had posted a picture of her own small, but visible goiter, with an arrow pointing to it and a caption that reads “GOITER!” Holy shit! I’m not alone! Then I went cruisin’ through her blog posts and not only were they well written, but they were funny. And not only were her posts well written and funny, but the blog itself was altogether clever. After reading a few of her posts, I came across a video of her giving a keynote speech where her intro went a little something like this:
“… JD is from whatever city, her favorite physical feature is her goiter, her favorite way of pleasuring herself is with ear drops…”
HOLY SHIT! This lady is not only clever, she’s well spoken, hilarious, and most inspiringly: BRAVE. She also has great hair, much like myself. So I emailed her. She responded warmly and with encouragement. I could relate to a lot of what she shared with me, things that aren’t apparent when you read her blog or watch her videos. She represents the kind of character I want to embody while living with this disease; to live a full life despite it and to maintain my sense of humor in those moments when I catch the lump in my throat in the mirror, or the increasing prevalence of both swelling and sinking under my eyes. GAH! I just deleted the sentence “this disease is aging and deforming me”. Here I am writing about the person I want to be, about inspiration and positive psychological movement and I fall back into feeling like a victim. BECAUSE I AM ONE!! But that doesn’t mean I have to feel like one. …I’m looking into books on cognitive behavioral therapy.
Today, I was checking out my blog stats and clicked on an exit link that I didn’t know existed. It led me to other wordpress blogs about Graves’ Disease, where I quickly clicked on what promised to be words with which I heartily agreed. “Graves: The Chancre on the right buttock of life.” Yes. As I read the blog entry by the author gravesblows (indeed it does), I knew I’d stumbled upon a kindred spirit. I could not nor have not written such a succinct account of what it feels like to have this disease. Just as I think everyone should have to work in a bar or restaurant for a year of their life in order to learn how to treat people, I think non-health compromised folk should have to read this post in order to learn compassion for those who complain about their “invisible” diseases. Mr. or Ms. Gravesblows, thank you for providing me with a title for this blog post. An exerpt:
I just want to say, up front, that I think that Graves disease is a rather unfortunate name for a health condition. I mean, really. “My name is Dr. Gaylord Gary Grave and I’ve just discovered a disease. I don’t want the patient visualizing a hole in the ground headed with their name carved in stone, so I’m going to name it Gaylord Gary’s Rainbow Disorder.” See, that wasn’t hard. That name’d cheer me up at least.
Indeed it has. While Graves’ still both sucks and blows, now that I have a new name for it, I am filled with cheer.