HeartStrung

I can’t stop the tears. They just flow out of my eyes and stream down my cheeks and drip off my chin. I’m not sobbing. I just can’t stop the tears. The same way I just can't stop my heart. I know it sounds silly. I mean, 6 years have gone by with no answers so it’s not really shocking when the doctor says, “There’s really not much else we can do.” But somehow it crushes my spirit anyway. It’s like I’m a balloon and all the air inside me has just been let out. I’m left wrinkly and deflated. Because I get up and I go to appointment after appointment and test after test and I hope and I hope. Maybe this time they will find evidence. Maybe this time will be different. All that hope, wasted. Again. I choked it all back as I sat there under his watchful gaze, willing myself not to let my eyes fill more than they already had, willing the tears not to spill over the edge of my lids. I stared at the pink poster on the wall across from me and blinked, trying to get the tears t

I woke up this morning to the sensation like a gorilla or a refrigerator or something  really really  heavy was crushing my legs. I wake up to this sensation more often than I care to but it's not just a morning thing. Sometimes it starts mid-morning. Sometimes afternoon. Sometimes evening. Sometimes it keeps me up most of the night. It is a pretty awful way to wake up though. I've been trying to decide which is worse: waking up to this crushing sensation or waking up to the sound of someone clapping loudy and shouting, "Time to Get Up! Get Up! Get Up! Time to Get Up! Get Up!" in a sing-songy kind of voice. Some energetic lady (someone's mother maybe? Or a teacher aide? I don't remember) woke all the girls up this way on our 6th grade overnight trip. I can't really decide which is worse. They are both pretty jolting ways to wake up. On the one hand, I prefer the pain. It starts out mildly and brings me along with it until I can no longer stay asle

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