When you are sick for a very long time, and no one gives you any answers, it sucks. You start to question yourself, your symptoms, your mind. It is terrifying and isolating and there are days you would give anything to know what is wrong and how to fix it.
And God bless the doctor who finally gives you answers, at least some of them, and sets you on the path to feeling better.
But what happens eight? Nine? months down the road when you feel awful all the time again, and your blood work shows you are following your stupidly rigorous diet to the letter so obviously, this, too, is all made up?
What happens when it is a struggle, mentally and physically, to get out of bed in the morning and go to work? How about when anything you eat makes you hurt? And all you feel is guilty, because you are making so much hassle for everyone else? What then?
Six months ago I was frustrated at the challenges of following a gluten-free lifestyle, but I was starting to feel healthy for the first time in more than a decade, so the scales tipped in favor of all the work and expense it took to live gluten free.
About two months ago I was slammed with a pretty nasty sinus infection, and within a month, a second one. And I haven't felt well since then. Not just in an "I have some sniffles" way. I'm exhausted all the time. My joints hurt. I've been working on crocheting a scarf for weeks, because I can get about two rows done before my fingers just lock up. And I'm back to having to scout the location of the nearest bathroom any time I leave my house. I have no energy, and some days, it takes all my spoons just to get to work. This comes at an awful time, as we are heading into the holiday season, my first as a card-carrying celiac, and I know it's going to take loads of energy to handle it.
I normally like to keep it pretty light here. Yummy food. Fun events. The sunny side of celiac, if there is one. But pretending everything is okay when it's not? It's exhausting. I'm tired. There's hope on the horizon, though, in the form of the University of Chicago, and I will be visiting them early in December to hopefully find some more answers.
Those of you who are veterans of this nasty disease, did this happen to you? I'm not looking for pity, I am looking for answers, and maybe a little bit optimism.