Connection. It's one of the most primal human desires. We feel better when we know we're not alone. There is strength in numbers. I think that's why it can be so natural to flood of relief and connection when we learn of someone else with a medical resume similar to our own. "Oh my god, you too?!" It means we're not alone. It means that as shitty as we feel, or as debilitating as what we're suffering through might be, there is this life line of connection with someone else having a somewhat shared experience. And when that someone turns out to be someone on your family tree? Misery loves that company even more. Why? Again, I think it all comes down to connection.Read More
I'm on day 14 of my 17 day long work trip, and I'm still alive. And actually, feeling surprisingly ok. Every time I walk by something wooden I have the nagging feeling I ought to knock on it, because, how can this be? But this hasn't come out of nowhere. I've been working for this for weeks, trying to build up my reserve to get me through this trip. It takes a lot of work toward health with a chronic illness. A lot of work behind the scenes so that I'm able to sustain the normal day-to-day things.Read More
Not unlike the little sprouts of spring ephemerals beginning to poke above ground at the first promises of spring, I feel a bit of life returning to my body, and to my soul. I feel a little bit more me, a little bit more hopeful. And so I'll waking up every day hopeful it will in some small incremental way be better than yesterday. If this season has a theme, mine will be that of a spring of hope.Read More
When test after test is coming back "normal", it can get pretty frustrating. You know something very NOT normal is going on, but the tests aren't finding what it is. I have found myself at times thinking, "Please just let this test show something!" Let there be some concrete measurable evidence we can name, and treat.
Well today seemed to be that day.Read More
My cup runneth over. I have had an amazing Christmas Eve and day, surrounded by family (that I actually genuinely enjoy), lucky enough to have the means to provide many thoughtful and heartfelt gifts to each other, and in a place where my aches, pains, and fatigue feel far overshadowed by love, gratitude, and peace.
But, the road to get here was not smooth sailing. It required a 1,000 mile drive (I'm not even kidding, literally over 1,000 miles). So what makes it all worth it? Family. Supportive family that lifts my spirits, and gives thoughtful gifts to help me feel better. A gift certificate for a massage while here in town. An open invitation to get in with the local chiropractor while I'm here. Warm alpaca wool socks to keep my always cold feet toasty. Gifts that say, "I love you. I understand your struggles. I want to help ease your pain if I can."Read More
5 migraines in 5 days. It almost sounds like some sort of masochistic world tour, but I didn’t even get a lousy t-shirt. What did I get? A shot of toradol in the ass and a veritable cocktail of intense short term pain meds. My migraines come with the focal aura premonition like sun spots bouncing around my visual field. Usually this signals me just about 30 minutes before the pain of the migraine strikes. Often it's actually quite handy. It's enough of an early warning system to alert me that I need to take my meds, drive home while I still can (if I'm at work), and brace myself for the impact of the migraine. This system is generally so reliable that over the years I've learned to never doubt it, and to take action when it appears.
But during this little world tour, it is really messing with me.Read More
Migraines. Another chronic condition littering my already lengthy problem list of my medical record. And they f*ing suck. There's really just no other to put it. I'm on day 2 of 2 sudden migraine attacks that that have put me down for the count. Yesterday's struck during yoga class. Today's was during work. Sunday I at least had the ability to come home, curl up in a ball in bed with my eye mask on to block out all the lights, and my trust nurse Maddy curled up at my side. But when one strikes at work, options are more limited. So I improvised. My office mate after 2 years is used to the standard procedures to shut off our overhead fluorescent lights of pain, lower the blinds, and let me curl up in a ball on the floor with blankets we keep handy. As Office Mate of the Year, she also checks in as to when I need a wake-up call to be ready for my next meeting.
These small acts of kindness and understanding can make such a difference; and not just in terms of migraines. With any chronic pain, or even really any "invisible" illness for that matter, for others to acknowledge that our suffering is real is an immensely comforting thing. To have others willing to jump in and help give you what you need, when you need it, is huge.
Cherish those people who can empathize with you, and pay that empathy forward to others who struggle with something you might not have any personal experience or understanding of.