Mar 21

Seize the Day

I threw up in the shower today for the second time in less than a week. I’ve thrown up more than twice, but only twice while I’ve been in the shower. A new medication that I’m taking is making me sick and it’s been tough.

A little more than a week ago I was out on a Saturday afternoon with my mom. We had lunch with my sister and we laughed and joked and traded gossip. Then we shopped. The pet store for cat food. Mom needed cream cheese & I needed mascara so we went to the grocery store. We split up to get our stuff. I remember looking at mascara, but then suddenly I was sitting awkwardly on the floor of the makeup aisle and 2 people with a bed on wheels were asking me questions. What was my name? Did I know what day it was? Everything felt fuzzy. I was aware that I should have easy answers to the questions but I didn’t. I was thinking so hard but the answers just felt out of reach somehow.

I only recall snippets. I started to really be aware and lucid once I was in the ambulance. I started to realize what had happened. Well, it’s more likely that I was told what had happened. I had a seizure. Nobody was sure how long it lasted, but it was a grand mal (or tonic-clonic) seizure. This type of seizure is characterized by a loss of consciousness and violent, full-body muscle contractions. Surrounded by eye shadow & lip gloss, I fell to the ground and convulsed uncontrollably for what felt like hours but in reality was probably a couple of minutes.

The paramedics checked my blood glucose, ran an IV in my left hand, took my blood pressure and probably a million other things that I didn’t even notice or don’t remember. At the hospital, doctors and nurses drew my blood, checked my urine & blood pressure, did an EEG to check my heart and more. After a couple of hours I was discharged. They told me not to drive or swim, and that the neurology department would call me to schedule a follow up.

The next few days were awful. I was in so much pain that I could hardly move. The muscle contractions left every single part of my body in agony. I bit my tongue so eating was uncomfortable. I didn’t do much of anything, which gave me plenty of time to think.

I had seizures in my early 20s. Not very many, but one is actually enough. I took anti-seizure meds for a long time and once I found the right combination of seizure control and tolerable side effects, I did ok. In 2012, it had been 9 years since I’d had a seizure and my neurologist suggested I stop taking the meds. He felt that it was likely that I’d outgrown the seizures. From a medical standpoint, if I could make it 18 months without meds and without a seizure, I’d be considered cured. I went well beyond 18 months and I thought I was officially done with that part of my past. Until last week.

I feel betrayed by my own brain. I’m filled with fear and uncertainty. I’m desperately afraid. I can’t drive. I’m back on these powerful drugs that make me sick. I feel hopeless. Helpless. I turned 40 the other day. This isn’t what I thought 40 would feel like.

I saw a neurologist last week and she prescribed a new drug – the one that’s making me sick. I’ve reached out to her office to find out if the nausea & vomiting will go away or if I need to try something else. I’m still only on a half dose, but I titrate to the next higher dose in a couple of days. Will these problems get worse? I’m not sure yet.

As hard as this has been and as much as I want to scream about how unfair it all is and dissolve into sobs because I’m terrified, I’m incredibly lucky. My family and friends have been 1000% supportive. My boss is super flexible & has told me to do whatever I need to do. My husband is my rock & his job is also flexible enough that he is able to leave work to drive me to doctor’s appointments and to the many follow up tests that I have scheduled. I have great health insurance and I’m able to afford the deductibles and co-pays. None of this is cheap by any stretch. I haven’t been billed for the ambulance or ER visit yet, but my portion of the MRI I had this morning was more than $500 (which I had to pay upfront without any notice, but luckily I have an FSA). That’s just one test of many. Plus the prescriptions and office visits and it’s overwhelming and endless.

I guess what I’m getting at is that this sucks. It’s been a real struggle. As tough as its been for me, I can’t even fathom how people deal with any kind of serious illness IN ADDITION to the financial burden. Too many people have to choose between necessary medication and groceries. Or opt out of costly diagnostic tests that could ultimately impact their treatment & prognosis. So as much as I may whine & complain, it’s not lost on me that I’m extremely blessed.

I don’t really have any point to any of this, but I’m a tornado of emotion and I really needed to write about it. If you made it all the way to the end, thank you for listening. ☺

UPDATE 3/23 – I heard from my doctor, she thinks the nausea will resolve itself and told me to keep to the medication plan & update her either way. I’ve been feeling better the last couple of days, so I hope she’s right! I switch to the higher dose this evening, so cross your fingers. Also, here’s a very quick sketch of me on the grocery store floor I did a week or so ago. And YES, I really was wearing my Bad Ass shirt. 😎