41 things I’ve learned since my diagnosis

  1. The pros and cons of pretty much every EWG approved sunscreen.
  2. What SPF actually indicates. (Hint: it is NOT the amount of time you can safely be in the sun. Though hard and red experience had already taught me that wasn’t true.)
  3. How freeing sun-protective clothing can be.
  4. What a nephrologist is. (I should have known this already, honestly, but nephrologist and necrologist sound pretty similar and I was just really relieved to learn I didn’t need to make an appointment with the latter.)
  5. Prescription toothpaste comes in a flavor called Fruitastic that tastes literally nothing like actual fruit and is the color of bubble gum and who the hell wants to brush their teeth with something that tastes like pretend berry candy anyway? I AM AN ADULT JUST GIVE ME THE TOOTHPASTE IN MINT.
  6. I’m way more ok with needles than I’d thought.
  7. My body can offer up 13 vials of blood at the lab, but 14 is pushing things too far.
  8. Fewer than 10 empty vials waiting to be filled is a light day with the phlebotomist.
  9. Peeing in a cup gets old real quick.
  10. You should not pee in a cup if you have your period, unless it’s for April Fool’s Day and you want your doctors to panic.
  11. The “normal” range for a C3 lab result.
  12. Numbers on lab results don’t tell the whole story.
  13. You can tell a lot about how your experience with a doctor will be based on your experience in the waiting room.
  14. Falling asleep with adhesive lozenges in your mouth is not as scary as anticipated.
  15. I can swallow two (admittedly small) pills at a time, which is something I’d never have guessed I’d do. (I was always bad about taking pills. The first time I had to take one was when my pediatrician had screwed up and prescribed me antibiotic pills instead of the pink bubble gum liquid amoxicillin I’d always had before, and we lived 30 minutes from the pharmacy so there was no going back to trade it out right then. My dad had to convince me to get it down by telling me that it was time for Power Rangers and I was going to miss it if I didn’t hurry up and take the pill. After I’d gotten up all my courage and swallowed it, I hurried to turn on the tv. Turned out my dad lied and Power Rangers wasn’t starting for almost an hour.)
  16. Literally no doctor appreciates hearing that you’re using non-fluoride toothpaste.
  17. Or that you’re not exercising.
  18. Sometimes you will have to trust your own knowledge of your body and stand up for yourself.
  19. Knowledge is always neutral, and you should try to learn everything you can about your illness.
  20. But also, it’s better to hold that knowledge a little loosely.
  21. People who tell you there is only one right way to approach healing should be dropped.
  22. People who suggest that you brought your illness on yourself by not eating right, not eating right enough, not taking the right supplement, etc., should also be dropped. On their heads.
  23. How to plan to rest.
  24. The best way to have energy to do what I want is to rest before I get tired.
  25. Wanting to be able to do a thing does not mean I will be able to do a thing. Apparently, willpower and positive thinking are not all it takes and The Little Engine That Could lied to me. (Like my dad. Thank God for therapists.)
  26. It can be a relief to be able to remember the direction you’re supposed to turn 4 actual seconds after the GPS announces it. (For months I’d been having to check the same turn directions 4 or 5 times, because my brain just could not recall whether it was right or left, this street or the next one.)
  27. Having the short-term memory of a goldfish as a 29 year old is not, in fact, a natural consequence of aging.
  28. It’s crazy how great it can feel to be hungry when you didn’t realize you hadn’t felt hunger for years.
  29. How to deal with hanger. (J/K, I don’t actually know that. PLEASE FEED ME 12 MINUTES AGO THANK YOU.)
  30. Trying to get doctors at different practices to communicate with both you and one another can feel like a Sisyphean task.
  31. Trying to get traditional Western and alternative holistic practitioners to believe that the opposite side is helpful to you can feel similarly challenging.
  32. It’s incredible how often assorted medical experts will tell you to take a medication that you’re allergic to, despite the number of times you’ve written it on their forms. It would probably be more effective to just get my allergies tattooed on my face than to keep listing them on those 14 page forms.
  33. As much as I don’t want this to be true, it’s very often up to me to be on top of my meds, supplements, potential reactions, medical records, and a whole host of other things.
  34. Finding people who really “get it” is an enormous gift.
  35. “In sickness and in health” doesn’t necessarily mean 40 years from now, like most of us imagine when we say it. Sometimes it means 4 months from now. Surprise, honey!
  36. My lifelong obsession with finding the perfect chapstick and carrying tubes in every coat and every bag is apparently a medical necessity, so good job me for keeping my lips kissably soft all these years.
  37. My body’s needs do not make me less-than.
  38. Chronic illness tired is a thing that’s hard to explain.
  39. I don’t always need to explain.
  40. Or apologize.
  41. X reduces mortality rate” is a really funny medical research phrase. Like, does it really? Because to the best of my knowledge we, as a species, are historically running right at a 100% mortality rate. Even Jesus died, you guys.


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