HeartStrung

Two weeks ago I had to wake up Mr. Amazing at 2:30 in the morning to take me to the emergency room. We left the clones sleeping in their beds. They had already witnessed me, earlier in the day, struggling to breathe and it scared them. It scared me as well but I didn't do anything about it. I should have gone in earlier but I didn't know. It crossed my mind a number of times throughout the day that maybe I needed to go to the emergency room. For one thing, I was getting ridiculously short of breath whenever I stood up. If I took more than one step, things became severe. I tried to go from the couch to the washing machine but half-fell half-slumped to the floor less than half the way there, gasping for breath. I couldn't lay down flat either. Mostly I just sat on the edge of things, in a triangle type pose, trying to breathe through what we all just assumed was an unprovoked panic attack on top of an acute infection. (The nurses at the hospital later told me that was e...

In my former life, I was never a big medication taker. I was reluctant to even take an over-the-counter painkiller for a headache because I felt like the painkillers were just masking the pain and if I had a headache, I preferred to know about it. So unless something truly severe was going on, I preferred to just feel it and deal with it, knowing it would eventually go away. I may not be a pill popper under normal circumstances but chronic illness is not a normal circumstance. It's a different story when the offending feelings are a daily thing. Daily symptoms get old fast. The pain feels worse, not necessarily because it is off the pain chart but because it just keeps going. There is no end in sight. I've tried a number of medications over the past 5 years and none of them made me feel any better but most of them did plenty by the way of side effects. Mr Amazing lovingly refers to me as side-effect girl . I don't usually get the really bad side effects of a medicati...

What does chronic illness look like?  Does it have a face?  Does it have a sound? Do you think you can tell from a person's appearance whether or not they are sick? Do you think you can tell from the sound of their voice? Our society has so many assumptions about what it means to be sick. There are friends who will call on the phone and at the sound of my chipper voice will be convinced that I'm well. There are acquaintances who hear of my illness journey and confidently exclaim that I don't look sick so I must not be. There are doctors who say I must not be all that unwell because I'm sitting in front of them smiling and laughing. These assumptions hurt. They hurt me deeply and profoundly. They lack elements of compassion and understanding. They tend to make me feel misunderstood at best, not believed at worst.  Often, I sound chipper on the phone because I'm happy to be hearing from the person who called. Hearing from someone I love, who wants to...

photo by Ron Place I walk in smiling. I'm not necessarily keen on meeting new people, especially new people who are doctors, but I know that after the first appointment they are no longer new and every subsequent appointment will be easier. I walk in smiling. I'm grateful to be seeing this doctor. I'm hopeful that some benefit will come from the appointment. Or at the very least, I will be heard. I walk in smiling. I like people. I want to be a blessing to everyone I meet. And I know that sometimes a genuine smile from one person is all it takes to turn a person's day around. I walk in smiling. I know how this is going to end. But I walk in smiling. I wait. I do it with patience, even while I wonder what the point is of showing up 15 minutes early, as requested, when I will end up waiting in a colorless room for 45 minutes beyond my appointment time before they get to me. I wait with patience. I speak. I try to be clear, even as I use unusual simile...

It's November. November 2016. The air outside is chilly. The trees are half bare, their vibrantly colored leaves scattered on the ground, curling at the edges as their remaining moisture seeps into the air. My first friend-in-motherhood has been dead for a year now, her tragic death still feeling as fresh to my heart as the day it happened. And the anniversary of my getting sick has come back around. This month we mark five years of undiagnosed illness. Five years of unexplained, untreated pain and ailments. Five years. It is safe to say there is a lot of reflection happening here. I remember arriving at the testing facility for my first MRI in 2012. I'd driven there alone, not knowing what to expect. My palms were sweating as I signed in at the desk. I was afraid. Afraid of what the MRI would show. Was there a tumor growing in my brain, pressing on a cranial nerve in my ear? Was this MS? Was it nothing? The receptionist asked me some questions, one of which was how lon...

If you ask me how I'm doing you are likely to hear me say, "I'm okay." But...how I'm really  doing is so much more complicated than a quick reply to a passing question. I'm in a rough patch. It's been going on since school started at the beginning of September. Even though Mr. Amazing does the entire morning routine while I sleep, somehow I'm at least as exhausted as he is, possibly more. Whether or not I'm in charge of getting the clones off to school in the morning or not, school season brings with it a lot more activity. Our days are fuller. Or their days are fuller. And somehow it's affecting me, regardless of how involved I am in the busy. I can't get back to my base level of sick. Maybe it's all the car rides and the fact that the clones actually need clean clothes so the laundry has  to be done. Maybe it's the way we end up juggling dinners around soccer schedules. Maybe it's all the blood draws and doctor app...

“Brain fog is needing a reminder to remind you what your reminders are for.” — Selena Marie Wilson One thing most of us chronic illness warriors have in common is brain fog. It's like driving at night through heavy fog, when your headlights are bouncing off the moisture in the air and you can only see a few feet in front of you. You're not exactly sure where you are. You're not sure how soon the corner you need to turn at is approaching or whether or not you've passed it already, or wait...were you even supposed to turn? It is a couple bounds past "pregnancy brain" and a few leaps short of dementia. It is not being able to remember the names of teenagers you've known since they were in kindergarten. You open your mouth to cheer for them during a soccer game but their names won't come into your mind quickly enough. You echo the other parents around you, hoping no one realizes your slightly delayed cheering. You never know what day it is. You...