Some additional thoughts on "Migraines"

Previously on The Diagnosis

Shortly after posting my last entry entitled Migraines, Ryan, as he kindly does with all of my writing, re-posted it on Facebook. It was accompanied by a comment that I had "pulled my punches" by basically sugar-coating the entire experience. I value Ryan's opinion above all others, especially since, well, he was there. He usually has only minor feedback - mostly positive and encouraging, occasionally sharing bits and pieces of items he remembered that I did not include. This time his observation worried me so I went back and re-read what I had written.

He's absolutely right.

I have a tendency to do two things. The first is, as Ryan said, I will often re-frame my story when talking to other people so that it's not so upsetting. I don't like for people to dwell on what I've been through. It's in the past, I got through it, and it's not something I even think about much anymore. And I also don't like making other people feel bad.

The other is that I've just blocked certain things in my memory. I think it's my brain's way of protecting me and being able to continue to have a good attitude. If I can fool myself into believing "that wasn't so bad" I can maintain a more cheery disposition and it's easier to continue on.

Also on top of this and in this particular case, the migraine era was a time in which one, I felt crappy a lot, and two, I was on a lot of drugs (prescription, people). I just don't remember it well at all and that's on top of my brain's selective memory. But you know who does remember it? Ryan. 

It's no secret the Phoenix years were awful and high on the list of reasons for that was our isolation. Ryan not only had a front row seat to the unpleasantness, he felt entirely responsible for me. There was no one else around to give Ryan assistance. Not only would it have been nice to have help making decisions, being my advocate, and lugging me to and from the hospital, he also needed the support emotionally.

In Texas it was a lot easier for my mom to jet in to lend a hand when things got hard. Jason lived nearby and we had a lot of friends. Ryan's folks were relatively close. My mom would occasionally fly over to Arizona, but it was a bigger ordeal and happened much less frequently. 

Most devastating of all was the resistance he was getting from me. I hated being admitted to the hospital. Hated it. So when the doctors gave me the all clear to leave the ER instead of being checked in, I should have backed Ryan up and pressed harder for more answers, but instead I couldn't wait to get home and jumped at the opportunity. 

I also wasn't taking care of myself at home. Here's an example: my appetite wasn't good so my diet was terrible. We would have whole fights over my insistence upon eating ramen noodles. Ryan's point, which was a solid one, was that the MSG was not helping my migraines. In my head, I was getting migraines all the time anyway, so what was the difference? Not a great argument and not helpful.

Friends, throughout this whole story I've given the impression that I was a model patient. That may have been true in some respects, but it certainly wasn't the case at home. It's one of my biggest regrets in life that Ryan had to go through that stress and that I was not more understanding and helpful. He still carries a great deal of PTSD from that time. In giving a rose-colored version of events, I was not only being dishonest with you the reader, I was also discrediting Ryan's experience. 

I plan on going back and editing the entirety of The Diagnosis when I finish (I think we're getting close!), and I will merge this content with the Migraines chapter at that time. For now, I wanted to make sure it got the attention it deserves so I am making it a separate entry. My apologies to Ryan for not getting this right the first time. I never want him to think that I don't appreciate and treasure the kind of person that he is. He truly got me through life with migraines.

Next up: Dialysis Two


The League said…
This comment has been removed by the author.
The League said…
Oh boy.

So, to date I have tried not to comment or weigh in. This is Jamie's story, and I think she should tell it as she sees it. If I wanted my version of events, I'd be writing a response blog, and that seems weird, so. No.

Jamie has done a great job painting a picture, but when I read the migraine entry, this was the one where I did think Jamie left out a lot even when she acknowledged it factually.

For the better part of 2005, we were in the ER 2-3 nights per week. This round trip included driving, checking in and filling the exact same info out over and over and over (something that as an IT professional drove me personally insane), then waiting for periods from 10 minutes to eight hours. Every time. This was followed by about 2-6 hours of time in the ER while whatever THIS team of people tried out to stop the migraine. Then the eventual check out and return home. It was usually a 12-hour turn around.

I should not *hope* Jamie's migraine comes in at 4:00 AM when I know the lobby will be least busy, and that you need to get there before 5:00 PM when people get off work, but that was how much we were in the ER.

We never slept. Jamie would wake up during the night and tell me she had a migraine and off we'd go. If she got up to do anything in the night, even turn over hard, I was up and putting my shoes on, which irritated her to no end. The longest we had for a stretch with no ER visit was about 4 days.

If it was night time, I'd check her in, get her situated, I'd leave her, go take a shower and deal with the dogs, go to work for a while, then come get her and then go back to work.

The hospital staff were unpredictable. I had one orderly offer to fistfight me when I asked if he could turn off a machine that was screaming electronic beeps that everyone was ignoring. Another one heard Jamie had heart issues and insisted he couldn't help her until he had tracked down her *entire* medical history. Which even we couldn't remember anymore (and he didn't ask us).

And, of course, Jamie was very, very ill and couldn't be fully worked up, because the ER insisted she needed to see her doctor, but she was missing all of those appointments because she was in the ER. I literally begged multiple people to just check her in, explaining the situation, and no one would do it. Of course we never saw her real doctors in the ER, just people trained to send her back out.

For the record, I started also saying Jamie needed to go back on dialysis months before her doctors did, but she also couldn't be seen. So.

I was fairly certain my departure from Phoenix was going to be alone until she finally was checked in to Desert Samritan and checked back out on Halloween, 2005. That's when the ball started rolling the right direction.

But, yeah, for a few months there, all we did was have downtime between ER visits, waiting for the next one to happen, which it did every few days.

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