In my last post, I shared about perspective and expectations when the mama has a chronic illness and enjoys the privilege of homeschooling her children. Today, I’m interviewing my 17-year-old daughter, Winter (you could call this a Winterview!), as she shares thoughts about having a chronic illness herself and how it has affected her educationally and emotionally.
Let’s jump right in…
How would you describe your life, Winter?
Winter: Creative, bizarre, enjoyable, unenjoyable. Non-normal. I guess you could say abnormal.
How would you describe the illness you deal with?
Winter: Painful, annoying, disturbing, bizarre. Not as bad as it was. Not as good as it could be. Not as good as I would like.
What are your diagnoses?
Winter: Allergies [food and environmental]; anaphylaxis to known and unknown substances; eczema or atopic dermatitis, depending on your vocabulary; ichthyosis vulgaris; cholinergic urticaria; and mild, nearly non-existent asthma.
What is the hardest thing about this condition?
Winter: The pain, I would say.
Can you describe the pain?
Winter: Needles jabbing into my skin, injecting spiders which crawl just under the top layer. Bug-bite-like pain. Should I describe how it feels when I have an anaphylactic reaction? [Anaphylaxis is a serious allergic reaction that comes on suddenly and may result in death. And yes, that definition is hard to type in context of interviewing my daughter. Really hard!]
Winter: Normally, it begins with a bit of a scratch in the throat. Then it feels like rocks are being thrown into my stomach, bouncing on rubber walls. And then I begin to itch [see above]. And then a marble in my throat, progressing to a rubber egg, and I can’t swallow very well. I get cold sweat-ishy. The world goes dim. I feel dizzy. I can’t think. And then…I don’t know what happens because I typically don’t remember anything else.
How does your health affect your decisions?
Winter: With the activity decisions, I know the triggers that make it worse—not dangerous [avoiding those completely] but worse—so I kind of weigh if that activity is worth the extra pain or not.
How does your health affect your education?
Winter: As of now or earlier in my life?
How about now?
Winter: As of now, I’ve missed out on a few field-trip-like things, but because I am home and homeschooling, it really doesn’t affect me much.
But at co-op, it gets hard sometimes with the food because people will bring in treats or donuts or whatever in class, and then they will be eating in class and I will be kind of left out. It bothers me and yet it doesn’t bother me, if that makes any sense.
And then after lunch, it’s kind of sad because I can’t play with the little guys very much because they had cheese and peanut butter, and I’ll get hives [from contact]. And then I can’t concentrate as well for the next class.
Oh, that’s something else that’s hard at co-op: After lunch during free time I typically flare, which makes it hard to do my best with acting in our Shakespeare class. But it kind of works out because if I flare in the presentation of the play, at least I know how to work through the pain. That’s one of those cost-benefits, where the benefit outweighs the cost.
And what about when you were younger?
Winter: It was hard because when I was in a lot of pain, I couldn’t concentrate very well. When I didn’t get much sleep at night because of the pain, it was hard to concentrate the next morning. I would end up doing school at night, as well as during the day.
When I was younger, we would school in the summer because I was homebound. I was at home anyway, so might as well keep busy.
Has the pain at night decreased so you sleep better?
Winter: As long as I keep up with my treatments, yes. If I kind of go, “It’s not toooooo bad,” I have a rough night and regret it.
This post will be continued tomorrow, as Suzanne discusses with Winter the impact on her education, treatments, advice to children with chronic illness, and finding joy. Please continue to pray for Winter; this is a never-ending journey for all of them.