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Non-fiction
"There's something wrong with me."
"I think you may be taking me to the hospital."
If you know me much at all, you know how alarming those words were, coming from me. In my mother's image (a woman who with a high school education became an assistant vice president of a local bank before jumping ship to work in the public sector, while dealing with an alcoholic, physically disabled husband, two small, badly behaved daughters, and a menagerie of animals, as well as household chores inside and out) I rarely stop and I rarely give myself a break. Weakness is something I can not afford.
Then I staggered into the bathroom, followed by my husband, who knows me quite well and knows how very distinctly alarming it is for me to admit weakness, and promptly proceeded to alarm him even more. I collapsed on the toilet; struggled to my feet and collapsed over the sink, leaning forward over the counter as he held me up.
That's what he saw. He was talking to me, but I wasn't answering. He wasn't sure I could hear him.
I could hear him, but I wasn't even trying to answer. I was fighting, inside my head, trying to get back control of a body that was suddenly unruly; I could hear him, but it was so far away, like there was a barrier between me and my ears; like something was in the way.
An apt description as it turns out.
Because I'm still me, a few minutes later, when I could mostly stand on my own, when I could answer him, I walked back on that a bit. I was slurring, I was forcing out words slowly. Internally, it took immense deliberation to speak. To stand. I stumbled to the study, where he called the insurance nurse hotline to decide if I really needed to go to the doctor. They were alarmed, and told me to call 911 immediately. It was too far to the hospital to go in a personal car.
The paramedics came. By then I could walk mostly unaided. I answered the door, because my sister and my husband were wrangling dogs. I stooped to push a cat back inside. I was functioning, but I still felt like everything was weird and slow and fighting me.
They sat me down in the living room and took my vitals. Textbook blood pressure, pulse a nice, even 68 beats per minute. "You might be hyperventilating," they said. "Could be an anxiety attack. We'll take you to the hospital if you want. There are things that could be dangerous to you, but at your age, they're unlikely." A stroke, for instance, was unlikely at my age, which I couldn't calculate myself - I had to give them my birth year because I was flailing around in my head trying to math. Every word was slurred and spoken with painful deliberation, but I had the words.
I said I'd see what happened, and they left.
Within five minutes, my poor slowed brain calculated. My hands and arms were still tingling. I felt like there was an iron bar between my ears. It wasn't exactly painful; it just felt... like there was an iron bar across my head. It was something my kinesthetic sense could feel.
I remembered reading about the fact that women have different 'typical' warning signs for heart attacks and other major medical crises. I remember reading that doctors aren't always aware of them, much less laymen like myself, and even volunteer paramedics like the lovely gentlemen who were perfectly willing to take me to the hospital, just weren't going to press me to go since I seemed okay. I wanted to be okay. I wanted to be strong. I didn't want to go, so I sent them away.
And I couldn't remember those signs, but I told my husband and my sister that I needed to go to the ER, and they drove me there.
At the ER, my vitals were rock solid. I still had to think about every word, but I walked in on my own, explained my own crisis. The lovely ER doctor wasn't sure what was going on, but she sent me for a CT scan, and an MRI. I laid in both machines, fretting about the expense, about how this was going to turn out to be an anxiety attack - even though I've never had an anxiety attack -- how embarrassing it was going to be. I thought about the weirdness of our medical system and our culture that on some level, I'd rather be having a stroke -- what the doctor was testing for -- than turn out to be having something 'all in my head'.
I was embarrassed they were moving me around the hospital on a bed. I could walk - more and more steadily with every minute. I was embarrassed and felt like I shouldn't be able to walk. They wheeled me back to the ER, and I sat there with a still anxious husband, waiting for results. Waiting to be told I was hypochondriac, delusional, it was all in my head.
My vitals were rock solid. I could still only talk with extreme effort. My hands continued to tingle. I had bars in my head. The nurses gave me ibuprofen and tylenol for what they kept describing as a headache, even though I wasn't registering the sensation as pain. I'm not sure that it wasn't a headache, just that pain wasn't the primary sensation I was detecting.
Then they came in and told me I had a small stroke in my brain stem, right at the top of the spine. They checked my limbs again. I could move them all; push up, push down, push back, track the finger in front of my eyes. The ER doctor went off to call the specialists in Seattle to find out what my next steps were, when someone comes in to the ER with a stroke, but no apparent after effects. My words started coming more and more easily.
By the time they admitted me to the hospital, I could talk mostly normally. I called my mother, and she came and checked on me, and picked up my husband to take him home. I still had tingling in my hands, but I could walk steadily. They still wheeled me in a bed, off to the ICU. I wasn't really in ICU, it was explained, but they didn't have a bed in the unit I belonged in. They hooked me up to the monitoring device, all the electrodes in place, tested my vitals. Still rock steady. The doctor managing the admission paperwork, he told me I was lucky that I'd gotten a good doctor in the ER. Most the time, someone with my symptoms - describing a classic stroke, but able to use all my limbs and without characteristic one-sided weakness - would be sent home. I mean, my vitals were solid, probably an anxiety attack.
When I met my attending physician, he was skeptical I had a stroke. I was too young. Didn't have enough risk factors. He wanted a second opinion on the MRI. Probably an anxiety attack. I could talk freely, but my hands were still numb and tingly, especially the left. I might have been having afterimages of light and visual artifacts, but I wasn't sure what was whatever had happened in my brain, and what was just exhaustion. It was 6 am and I'd been awake 24 hours with some serious stress in the middle. They gave me aspirin to help prevent a secondary stroke.
They did a battery of tests. There was an EKG to look for holes between the chambers of my heart. There was doppler tests on my legs to look for other blood clots. They sent me a physical therapist, who walked me up and down the halls, tested my reflexes, and declared me released from PT and free to move about the room independently. They sent me a speech therapist, who had some things for me to read, and told me I didn't need speech therapy. They sent me an occupational therapist who wanted me to have my eyes checked as soon as possible, and to see how I did as a passenger before trying to drive.
If I'd had a stroke, I didn't have any effects, but the doctor was skeptical. What are the odds a generally healthy 37 year old had a stroke? What are the odds a person who had a stroke at home, 30 minutes away from a hospital, basically was going to walk it off, without the weeks -- months! -- of therapy traditionally needed?
The EKG didn't show any holes in the heart. The doppler didn't show any further blood clots.
Finally, the second opinion arrived: the second opinion, too, saw a small blood clot in the brain stem, right at the top of the spine.
I was home by noon the next day, some 36 hours after I'd told my husband something was wrong with me, with instructions to see my primary care doctor soon, a referral to a neurologist that won't be coming any time soon because they're already overloaded, and a prescription for a statin, because even though my cholesterol levels are fine, that's what you do when someone's had a stroke. I walked out of the hospital without a wheelchair, because I was moving normally, speaking normally.
Now I'm left wondering every time I pause for a word, every time I fumble something I'm holding, every time my head hurts - is this something wrong? Do subtle consequences linger? Did I really just briefly look for words, or is that because I had a stroke?
And only slowly, after I was home, did it begin to hit me.
I was right about my sensation. Something was wrong with my body. Something was deadly, terribly wrong with my body. I lucked out on the size of the clot, where it was. But there was something wrong with my body that terrified me, and I was walking the razor's edge of a risk of death, of permanent nerve and brain damage.
But repeatedly, the medical profession questioned me. They weren't sure I could describe my own symptoms. They knew my body better than I did myself. They told me my textbook perfect blood pressure and calm, steady pulse suggested I was having an anxiety attack. Wait, what? Anxiety attacks are characterized by normal blood pressure and pulse?
If I had simply not gone to the hospital, I probably would have walked it off. I wouldn't have been told an aspirin a day (a habit I already have and possibly why I walked it off - I'd taken two no more than two or three hours before the event). I wouldn't have been prescribed the statins, which whether I agree with that decision or not, is in fact the standard protocol.
I would have learned that when I felt that, I could survive it. That might not be true the second time.
Even more alarming, had the second doctor, the one who told me that they normally send people with my symptoms home without doing tests, been the ER doc who saw me?
I would have gone home, and I would have learned that when I felt that, it was just an anxiety attack, and I should just calm down, ignore it. This too, would pass.
I don't think it's coincidence that the paramedics, the doctor who would have sent me home without a CT scan, and the doctor who wanted a second opinion were all male.
I don't think it's coincidence that the ER doctor who ordered those scans was a woman.
And if there's a next time I feel like that, I learned that I call 911 immediately. That I tell the paramedics I want to go to the ER. That I go, and I take nothing but proper tests for an answer. With a stroke history, I probably won't have to fight very hard to get them to take me seriously next time.
Probably. I am, after all, a hysterical female, probably a hypochondriac, and mildly overweight. Who knows what the next doctors will think?
Probably weird and strange to have me show up here but....
When it happened again that evening...and I was passing out every couple of minutes from obvious blood loss, I still didn't call 911, I called my brother for a ride (who can afford the ambulance?). 8 liters of blood, 3 endoscopes and a battery of other tests later, after being repeatedly told nothing seemed wrong except I had blood loss somehow, and older small and healed ulcers, during the 3rd endoscopy they had found a rare-ish defect in an exposed artery that tends to "hide" itself in my stomach wall when it's not bleeding, I had/have a Dieulafoy's lesion.
Now any time I have stomach pain, or discomfort that thought runs through my mind "Am I about to bleed out into my own stomach again? What if they can't seal it this time?"....When I sneeze, I can feel it, the "clamps" they put in me, when I roll over, I can feel it. And every time I ask that question.
Anyway Leti, at this point if you're still reading I'd assume you remember me at least a bit from the name. I was just thinking fondly on the old times RPing in Furcadia and decided to see if I could find anyone (Korthos has a surprisingly small social media footprint, even knowing his real name!)
Good luck in your future endeavors, and don't think me TOO creepy for finding you this way. That group was really my first group of "older" (if only by a couple of years) friends, in a time when I really needed it, and it's always stuck with me as a positive experience. So much so that I still continue to use the handle I cultivated with you guys there, going from Kit'N'Kaboodle, to Kitten Kaboodle, Kaboodle and Kaboodle Moon.
Re: Probably weird and strange to have me show up here but....
I miss the Furc days myself. I've been setting up a new computer and just copied over the installer to install even though I almost never log on anymore. (And there's really nothing creepy about it. I mean, I still have Furcadia in my interests, and I'm using the same name here as there! Hidden this is not.)
I wish it were all that simple ...
Fortunately, you have listened to your docs, right? It's been a year and a half with no known recurrence ... that's a good thing! *smiles* There're at least a handful of us lunatics out here that admire you, and think the world's a better place with you in it. :)
Yikes!
My wife's had the same doctors not listening thing going on. And it really does seem to be the dude doctors. She had to go to her old endocrinologist with a bunch of printed out research papers on the various medications to get him to listen to her on her diabetes. Now he does presentations to other groups based on the info she gave him. -.- Even
Re: Yikes!
Thankfully, the only lingering symptoms I've had have been exhaustion and, oddly enough, increased sweating/BO. Or at least I've noticed it more. Right after the stroke, I fell down fast for almost any exertion. Even still, I hit a wall. I'll feel fine, feel fine, and then it's just time to stop immediately.
The first few months after the stroke, I said I could do anything I used to do - but I could only do it once.
Now I'm a lot closer to 'normal' whatever that is, but there's still a difference in how fast I run out of steam when I start to tire. There's no gradient between 'can' and 'can't'. I just haven't been hitting the wall as often.
I'm glad your wife got listened to - eventually. I hope it made a difference.
They say that a lot of doctors get stuck where they graduate medical school and are slow to learn new information that's been released since.