I think most of us have realized by now that being a special snowflake doesn’t always feel that special.
As much as I’m a proponent of celebrating our differences, when it comes to rare diseases, those differences are more a complication than anything else.
Kerri Sweeris, who authors the blog “Living with Chronic Illness: Dealing with Reality with a Whole Lot of Hope,” talks about this very thing.
The post I’m referring to is from 2008, but almost eight years later, it’s still relevant.
In it, Kerri talks about the unique triggers she’s noticed throughout her over 17 years of living with myasthenia gravis (MG).
She details 2 in particular:
- LEVAQUIN: This was a newer antibiotic at the time that, according to Kerri, many people with MG responded well to. Not her. Within three days of beginning treatment, her symptoms worsened to the point that her husband had to carry her to bed. As of 2011, it’s now actually part of the indication that MG patients should not take LEVAQUIN for risk of those exact side effects.
- Flu shots: Despite being told for years to avoid them, she got advice from a neurologist to try a flu shot. As you can probably guess, it didn’t go well. Kerri ended up achy, sneezy, and feverish for days afterwards.
Of course, there are things Kerri mentions that everyone with MG should avoid (magnesium came immediately to mind) and things that others do well with that she doesn’t. There are also things, like LEVAQUIN, that seem fine at the time and whose real effects can only be parsed out years later.
(It sucks that those stupid pharma commercial disclaimers are right).
Everyone’s condition truly is its own snowflake.
All you can do is try your best to trace your own unique patterns.