May is here, which means the days are warmer, the pollen is plenty and the lazy summer days are near. It’s also Lupus Awareness Month, which means it’s probably time to talk about my new normal.
Many of you know of the countless visits to the doctor throughout the past couple of years when I was desperately searching for an answer to why I was so tired and in so much pain. Well, after all of those appointments–four doctors, two ultrasounds, two MRIs, two CT scans and several dozen blood tests–I tested positive for lupus and Sjögren’s Syndrome.
While this is a “forever” situation–there is no cure for either disease–I’m glad to know. It’s been a couple of months since the diagnosis, so I’ve had time to adjust and find my new normal, which means:
-not being quite as coordinated as I used to be
-having to write everything down
-being dizzy and nauseous
-sometimes waking up in the middle of the night because it feels like someone set my joints on fire
-not being able to go out for a run just because I feel like it (…or more likely because I ate too many cookies)
-sometimes not being able to do anything besides going to work, cooking dinner and going to bed (to be fair, Rob really does most of the cooking)
Honestly, I’m really lucky. For me, this is merely a frustrating interruption to my well being. For others, it’s something that wreaks havoc on their bodies and ability to lead a normal life.
Because these diseases are so different from patient to patient, it’s important to learn how they can affect one’s lifestyle, how you can be supportive of those with the disease(s) and what’s being done to move beyond treatments for symptoms to find a cure.
Please take just a few minutes to learn more about lupus (www.lupus.org/awareness) and Sjögren’s Syndrome (www.sjogrens.org). And join me on Friday, May 17, for Put on Purple for Lupus (#PutOnPurple). But don’t just wear it. Talk about it.
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