Birthday Jubilation

Tomorrow will be my birthday.

I don’t write my birthday down on the calendar anymore. I put other people’s birthdays down on the calendar without hesitation. I even schedule reminders on my phone’s calendar, and it politely counts down the last 7 days until the celebration. Somehow, I can’t do the same with mine.

It’s not because I’m dreading growing another year older. It’s not because I think it will be a depressing day, full of regrets that I’ve lived so many years but have yet to fulfill my 4 year old self’s dream of climbing Mt. Kilimanjaro, or some such goal. It’s not because I think that birthdays are overblown affairs. Actually, I enjoy and celebrate birthdays with a zeal that borders on the absurd.

I don’t put my birthday on any of my calendars because some bit of me is afraid that if I put it down, I’m expecting it to happen. Somehow, it feels like if I do grab my sharpie and just scrawl it down on the blank white square I, who don’t believe in jinxes, will somehow jinx it. If it is another event on my phone then maybe, like any other event, it could get canceled. I don’t want to count on getting another year older, because in the topsy-turvy world of illness that I live in, getting another year older is far from guaranteed. Because I don’t know if my birthday really will happen, I don’t put it down.

Life is not guaranteed. The next day might not happen for any of us. It’s not quite like the sunny commercials with the song “Tomorrow” from Annie playing. I love tomorrow.  It just that, unlike Annie, I don’t always feel “it’s only a day away.” Somehow my friends seem to traipse through their days, knowing that life could end quickly but seemingly only rarely feeling the gut punch of it. But even though I walk the same halls that they do, go to the same library and grocery store, and watch the same television commercials, that’s not my life. You see, I have chronic and largely invisible illnesses.

Most of what I have isn’t the sort of thing that kills you, at least not directly. I have POTS – postural orthostatic tachycardia syndrome. My body doesn’t automatically adjust for the change from lying down to sitting to standing. There’s good days and then there are floor days. Will it kill me? Not directly, not unless I happen to pass out somewhere dangerous.  I also have chronic pain conditions, and while fibromylagia and/or myofascial pain syndrome and neuralgia won’t kill you, they occasionally made me wish for it. Like many chronically ill patients, I’m still waiting and fighting for other diagnoses that might be years in coming — answers to questions about an undifferentiated autoimmune condition and random bouts of anaphylaxis. Both of those have the potential to kill me, either slowly or quickly. Even if we don’t have the diagnosis down yet on paper, it’s serious enough so that my doctors have already started treatment.

My doctors are not good about talking about the emotional impact of these conditions. Once or twice, immediately after I was diagnosed with one condition or another, I was handed sheaves of paper as I blundered out the door. Somewhere on the back of the generic printout would be a similarly generic, bland paragraph about support groups and depression.

No one told me that I would find myself staring at an unmarked day on the calendar and wondering what was wrong with me. Why couldn’t I just mark it off in the cheerful, sunshiny color I used for every other fun event, and move on?

Eventually, I did move on. I just put the pen down, walked off, and began the next thing. I proceeded to live my life, my new and strange life with chronic illness. It is not the Annie living that I do, where everything is only a day away. There’s usually plenty of everything in the current day, and I try to make it be good, too. I don’t use the YOLO philosophy anymore either, which often seems to be the excuse for doing things like having a pizza-eating contest or doing parkour on the third story of a building (I will neither confirm nor deny my past participation in such actions.) Instead I try to live knowing that even if I don’t know if I’ll be alive tomorrow, there’s no way I know right now that I won’t. I want to live life beautifully, honorably, uprightly. I want to live passionately and fully. I want to live so that my legacy is good, not bad.

I still can’t bring myself to mark the day on the calendar. Obviously, though, I know when it is. I recite the date every few days to someone in the medical profession, after all. I’m looking forward to spending the day with friends and family, whether that’s in person or virtually. I just want to live every day like it’s a celebration and appreciation of life, in some small way now.

Tomorrow is a blank day, full of the possibility for everything. Everything. Anything.

Advertisements

Confessions of a (chronically ill) graduate student

I confess. I occasionally get irked at friends who are trying out new diets. “Shred 10 is great!” one recently gushed. “I love it and I’ve done it several times!” “Nah, Ketogenic is the way to go,” someone else insisted.

For them, diets are pulled on enthusiastically and then discarded quickly, like summer camp t-shirts. They try to get me to come along to camp, and don’t understand why I don’t get on board, start singing “The Wheels on the Bus” and pull on a sparkly t-shirt too. But for me, well, diet is less summer camp and more a career in the Navy SEALS. Reading ingredient labels is life.

So I politely decline to join them on the trendy new diet. I secretly hope that these sorts of voluntary restrictions don’t adversely affect people who really have to avoid certain foods. And then I smile, and I tell them where I go to shop… because friends are friends, and people should be able to chose what they eat without excessive judgement, and SEALS do occasionally help summer campers.

Eating on Vacation, part 2

20170623_140937

Victory came in the form of a golden brown oblong. Bread. Real bread.

Tests results and a trial elimination diet showed that gluten wasn’t my problem. However, milk and eggs provoked all kinds of symptoms. I was told that food intolerances could wax and wane. I also found out that dairy and uncoooked egg whites could be triggers for histamine release. We decided it would be best for me to avoid dairy and eggs for several more months. The only bread I could find quickly while I was at school was Energ-G’s line of allergy-friendly breads. Tapioca bread quickly became a favorite, especially toasted with almond butter.

Problem: on vacation, there wasn’t any Ener-G bread in any of the grocery stores in my rather more country hometown.

In flew my mom in a super-hero apron cape dusted with flour. She whipped up a batch of French bread without eggs or milk.

The recipe below calls for 1 tablespoon of butter. But you can substitute in a safe oil/ fat. We did one a version with olive oil and double the whole wheat. It was a little denser and more chewy than your typical French bread, but very tasty.  It bakes at a high temp and we also tried a version with all the butter, and thankfully it didn’t seem to trigger anything. This site has a lot of substitutions for baking that I’ve used before: https://delishably.com/dairy/Substitutes-for-Butter-in-Baking.

FRENCH BREAD

2 packages active dry yeast

2 1/2 cups warm water (105°-115° F)

1 tablespoon salt

1 tablespoon butter or margarine, melted*

7 cups all-purpose flour

2 tablespoons cornmeal

1 egg white and 1 tablespoon cold water, for egg wash*

Instructions: Dissolve yeast in warm water in warmed mixing bowl. Add salt, butter substitute, and flour. Attach bowl and dough hook to mixer, and mix/ knead on medium-low speed for about 3 minutes. Dough will be sticky.

Place dough in a greased bowl (olive oil or a non-dairy substitute like Earth-Balance is cool, just so it doesn’t stick). Turn to grease top. Cover. Let rise in a warm place, free from drafts, about 1 hour and/or until doubled in bulk.

Punch dough down and divide in half. Roll each half into a 12×15 inch rectangle. Roll dough tightly from longest side, tapering ends if you want. Place loaves on greased baking sheet that have been dusted with cornmeal (ditto greasing with a dairy substitute. I’m not allergic to corn but I imagine if it’s not a good idea for you but a slightly crunchy, gritty base is still desired, Cream of Rice cereal could work. We’ve run out of cornmeal and the bread came off the sheets just fine without anything but “butter.”)

Cover bread. Let rise in warm place with no drafts until doubled in bulk (about 1 hour).

With sharp knife, make 3-4 diagonal cuts on top of each loaf.

Bake at 450° F for 25-30 minutes. Remove from oven. If doing egg wash – which we skipped – beat egg white and water together with form and brush over top of each loaf; bake for 5 minutes longer. Bread will make a nice hollow knocking sound when done.

Remove from baking sheets and cool on wire racks.

Should yield ~ 30 slices, give or take.