I can’t say for sure because I’m only on the first sentence here, but this post probably won’t give off as much optimism and determination as a lot of other things I’ve written. Fair warning: I have an appointment hangover today, which means I’m over-tired and feeling all over unwell and quite frankly I just don’t feel like being very positive. But that’s okay, because that’s real life.
So remember last week when I said that my one word for January was “trust”? Remember I said that I was going to put my trust in the medical system, long waits and all, because it had yet to let me down?
Yeah well, I’m calling a time out.
I spent a lot of time yesterday evening grappling with the frustration and impatience that I’m feeling because it’s still January which means that I’m supposed to be focusing on letting go and trusting the system. The thing is, though, ignoring those feelings didn’t make them go away, it only added to my exasperation. I realized that I could feel guilty for being fed up when I’m supposed to be all calm and trusting, or I could just accept those feelings because they’re real.
So I’m calling a time out, now. A time out for real life.
I had my long-awaited appointment with medical genetics yesterday out at BC Children’s and Women’s Hospital and Health Care Centre. My mom and I spent an hour and a half with a geneticist, a genetic counsellor and a medical student. They were thorough, understanding and proactive; overall it was a very good appointment. I’m being evaluated for a genetic connective tissue disorder called Ehlers-Danlos Syndrome but before she decides to make or not make an official diagnosis, the geneticist needs some more information. As such, I’m being referred to a cardiologist for cardiovascular imaging and an autonomic specialist for autonomic nervous system testing.
Don’t get me wrong, these referrals are good! I’m happy about them, because it means that I’m one step closer to finally getting to the bottom of all my random yet rather disabling symptoms. But, of course, this involves more…say it with me now…
Waiting. Waiting, waiting, waiting. I feel like all I have done for the last two years is wait, wait and wait some more! And I just do not want to wait anymore!
They couldn’t tell me exactly how long it would take, but they estimated about six months until I would be able to see the specialists and get the tests done. And it’s very possible it will take even longer than that. Plus, once I get this testing done, then I will have to wait to get another appointment with the geneticist to go over everything. Maybe it will all happen a lot sooner than I expect, and maybe in six months we will be laughing at how unnecessarily melodramatic I was. If that’s the case, great, but like I told you I’m over-tired so all I’m really focusing on right now is that I have to keep waiting.
But Catherine, you might be thinking, six months is not that long! Especially since you only started pursuing this in December!
Except that’s not exactly the case. I started wondering about Ehlers-Danlos and autonomic dysfunction two years ago. I mentioned it to my family doctor, to my GI and to the motility specialist I saw in Calgary. It’s not that they didn’t take me seriously, it’s just that they kept telling me I was malnourished and needed to get my caloric intake up. How could I argue with that? I was malnourished! And I did need more calories…hence the NJ tube, and the J tube, and the TPN. But I also really felt that there was more to it than just inadequate nutrition. And it’s only now that, for the first time in years, I’m consistently getting adequate nutrition, that my doctors are realizing there’s more to it than just the gastroparesis.
Six months, when I’ve already been waiting for two years, is discouraging. I know that I’ve got a lot of lost time to make up for, and that undiagnosed issues aside things will continue to slowly improve with time. Even still, my life is largely on hold, and it has been for the last two years. And it will always be somewhat on hold until we know what is going on and how to better manage it. I do my best, and I promise I’m not miserable day in and day out, but I’m also not going to school, going to work, going out with friends or anything else like that to distract me.
I’m waiting. Waiting to find out when my appointments are. Waiting for the appointments to come around. Waiting for results. Waiting for answers.
I’m tired. And I’m frustrated. I’m hopeful, too, but today I’m mostly just tired. I don’t want to be patient anymore. So forget my one word for January today. Today I needed to call a time out and let myself feel defeated, because that’s real life.
What am I going to do about it? Nothing, because what can I do? I’m going to keep waiting, and not because I’m exceptionally resilient or incredibly tough, but just because I have to. Because this is my life. Because that’s real life.
Aaaaaaaaand BREAK! (That’s supposed to signal the end of the time out…and if that’s totally wrong please don’t hold it against me because I didn’t play sports. I was a dancer, what do I know?)
Chin up, guard down. I feel a little better now. And I am surrounded by good people and reasons to be grateful. That’s real life, too.
P.S. I’ve really upped my game on this whole Lady in Waiting thing, as evidenced in the photo below. That or a fellow spoonie is learning Photoshop. It’s one or the other, or perhaps it’s both!