Holy Toledo

So, the last couple of weeks? Oy vey, you know what I’m saying? You probably do – because I haven’t really been able to shut up about it – but let me elaborate in writing. Thanks in advance.

On Sunday, April 26, my mom and Mollybear & Phoebe and I were heading out of Shawano (after attending my godson’s spectacular first communion party) when I slumped over in the driver’s seat (because I was driving) and became unconscious. I can’t imagine what this must have been like for my mom. I know that she, and the rest of my family, handled it beautifully, though, because when Molly talks about it she laughs and says that I got sick and that she and Steve then went to a party and ate hot dogs. I remember nothing of the event itself and even the moments after are very foggy. For example, I distinctly remember throwing up in the ambulance, but I remember neither walking to the ambulance, which I’m told I did, nor getting from the ambulance to the hospital bed. While at the hospital (or medical center, as I guess it’s more accurately called), I had a bunch of heart, brain and blood tests. Nothing looked too out of the ordinary and, after a decent amount of time with Ibuprofen and fluids inside of me, I was sent on my way with a diagnosis of having suffered a grand mal seizure and two directions: (1) no driving for three months and (2) call my primary doctor the next day to get a referral to neurology.

On Monday, April 27, I called my primary physician. I told the nurse that I was directed to ask for a referral to neurology. Instead, I was told that I would first need to be seen by an internist and the next available appointment for that wasn’t until Friday. Uh, ok. I took Monday, Tuesday and part of Wednesday off of work because I couldn’t move without significant muscular pain (for example, my jaw hurt like the dickens and moving from one position to another would have been comical if it weren’t so painful) and I was uncommonly sleepy. When Friday came, I went through the hoops of the appointment. I relayed everything that I remembered and I gave a written report of what my mom had observed. I brought all of the paperwork from Shawano, including a DVD of the CT scan of my brain. I just kept thinking, “Answer the questions and we’ll move this along.” I did all of the muscle tests that were asked of me (push here, resist here, etc). The appointment must have lasted an hour. At the end of it? I was referred to a neurologist. First, though, she asked that I do more blood tests and another EKG. I complied and the tests were all returned with mostly normal results (“Good news!” read the note to me). I was told that Neurology (I’m going to capitalize it from now on, just because) would call me, but that if I didn’t hear from them by Tuesday, I should call the office.

Tick, tock.

On Monday, May 4, I woke up with a horrible sore throat. I mean, ouch. But, I also had a bit of a cold so I thought that maybe it was related. We took Mollybear in for a dental appointment (during which she sat on my lap and cried, “I want my mommy!” – always confusing for everyone), then to school and then we went to work. My throat pain wasn’t abating and I realized I’d had chills throughout the night. Hmm. I called the doctor and made an appointment, worrying that it might be strep. I had my performance review at work at 10 and asked Aaron to take me home around maybe 11. I just wasn’t feeling right. I slept for a bit and Aaron picked me up at 2:30 to take me to my appointment. I went in, described my symptoms and was told, unequivocally, that I did not have strep throat. No swab was taken, no test performed. Although the resident said some of my lymph nodes were a little swollen, he was certain it was not strep, but was instead viral. He told me to come back if it got worse. I went home and felt kinda embarrassed. When I woke up on Tuesday, I felt no change in my condition, but I certainly felt like something was wrong. Even if this was *just* viral, it wasn’t feeling very good. I needed to stay home. As the day went on, things got worse. The pain in my throat extended up to my ear. It no longer hurt only when I swallowed, but all the time. I measured a temperature of 100.6. This just couldn’t be right. But I’d felt dismissed the day before, so I doubted myself and continued to hope that the pain would subside soon.

Tick, tock.

On Tuesday afternoon, I called my primary doctor’s office to relay that I had not yet heard from Neurology. The response? Here’s their number. Uh, ok. So, I called Neurology and explained the situation. The nice woman on the other end of the phone said, “Well, we’ve actually asked your doctor to request a couple of tests be performed before we see you and she has not yet ordered those tests. Let me transfer you back to their office, but I’ll explain to them first what we need.” So, I get transferred back and the guy to whom I’m transferred said to me – earnestly – “Ok, great, I’ll get the ball rolling on this!” Uh, ok. It’s been nine days now since I had the seizure.

Tick, tock.

On Wednesday, May 6, I woke up and felt terrible. Every time I swallowed, my body made a large jerking motion to try to offset the pain. I couldn’t talk without pain. I couldn’t breathe without pain. Whatever this was, I needed help. Ibuprofen hadn’t alleviated any discomfort since Monday evening. Enough is enough. I just couldn’t take it anymore. We dropped Molly off at school (well, AO did; I was far too reluctant to go near all of those kids) and he took me to Urgent Care. I walked in and asked to be seen. The woman at registration was so kind. The nurse who led me back to the exam room was mostly nice, but when I requested that we skip the scale – honestly, since turning 39 I feel more confident in asking to skip the scale at most appointments, but why on earth would anyone need to be weighed to determine if they have strep? Plus, I’d had it! I didn’t want to take any more time to do any of this nonsense! – she said, “Ok, I can put down that you refused.” Uh, ok, put that down. You do that. The nurse took my blood pressure and pulse and temperature (100 even) and became more sympathetic as her tasks wore on. She took a swab of my throat and left. The NP then came in and I almost started to cry immediately. She was so kind and caring and she listened so well. She looked at my throat and told me that no matter what the test results were, she was getting me medicine because things looked terrible. In about three minutes’ time, the test results came back. Positive. I had strep. I actually started to cry. I felt so validated. She sent me on my way with a prescription for penicillin, three Ibuprofen and a bottle of apple juice. Praise modern medicine and health care providers who listen.

I went home. She said that I needed to stay home for 24 hours. While I didn’t feel immediately better physically, I felt entirely different mentally. I felt listened to. I felt respected. I felt, weirdly maybe, vindicated.

This morning, Thursday, May 7, I realized that I had missed a phone call from my doctor’s office that came in yesterday after 4 p.m. The voice mail just said to return the call from someone I’ll call Jennifer. Around 8:15 a.m., on the way to take Molly to school, I returned the call. I was told that Jennifer was busy, but she would call me back. Around 11:20, Jennifer called back to tell me that Neurology had requested an EKG and an EEG. She said that I could come in anytime for an EKG, but that I’d have to wait for a call from a specialized scheduler for the EEG test. Ok, I thought, kinda puzzled. I hung up the phone, relayed the info to Aaron via text, and quickly checked MyChart. I thought, “Didn’t I have an EKG on Friday? Isn’t that what that was? And didn’t I have one in Shawano? Why would I now need a third one? And why would Neuro want yet another one?” I quickly called my doctor’s office back and – against all odds! – was actually able to speak to Jennifer during this same phone call! I said, “I think I had an EKG on Friday. I think Dr. X ordered it.” Jennifer gave me a weird answer to something that I hadn’t said, but eventually confirmed, yes, indeed, I had had an EKG on Friday and, oh wait, that’s not what Neuro had asked for at all. Turns out, Neuro had asked for an EEG and an MRI of my head, something my doctor had not previously ordered. Oops! Ok, they will get on that now (four days after Neuro had requested it) and I will, once again, wait for a specialty scheduler to call me.

Tick. Effing. Tock.

[And yet I know, despite all of this, how lucky I am to live in a time with the medicine we have, in a country in which I can access it, in a city in which it is all around me and with a job that lets me afford its privileges. Still. Holy Toledo there has to be something more efficient.]


5 Responses to “Holy Toledo”

  1. 1 satcla May 7, 2015 at 1:15 pm

    It’s. Too. Much.

  2. 2 Sara May 7, 2015 at 2:52 pm

    I don’t even know what to say about that. WTF?

  3. 3 Tammy May 7, 2015 at 3:52 pm

    Been thinking a lot about you! I appreciate the detail, except that I can’t think of one thing to say to make it better. XX

  4. 4 Mary Lloyd May 7, 2015 at 3:56 pm

    Bad news. Thought you had an MRI in Shawno. But I guess that was a CT scan. That is horrible medical treatment in both situations. Glad you are an excellent advocate. Most people would not be able to do that. Keep up the good work. Looks like you are the only one doing it.

  5. 5 Jane Roe May 7, 2015 at 5:35 pm

    Good grief how ridiculous! I have been think of you and thinking of you, assuming that by now you’d have some answers. Instead you have been dealing with utter incompetence. Hang in there sweetie and don’t let the buffoons at the helm get you down.

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May 2015

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