Follow up

So, about a week after the debacle I went for a follow up appointment with my PCP to check in and update charts and all that stuff. We chatted about a lot of things, she gave me an ointment to put on the allergic-reaction rash I developed to whatever it was they swabbed me down with to insert the IV and do the blood draw at urgent care, the basics. We discussed my upcoming assessment appointment at behavioral health.

“Do you think you’re going to be able to stay sober until then?”

“Oh yeah. Gone through the withdrawals and the sedatives, starting to feel human again, I can and will definitely stay sober another week. Probably much longer. But in reality, until we get my pain and anxiety/depression under control, I’m just going to keep going back eventually.”

I had a really good run this spring, after the first try and the seizure and all. Three months or more, and I was even the kind of drinker I would LIKE to be—the kind that can go out and grab a beer with friends every once in awhile then go straight back to not drinking. And even this last time I lasted almost a month. And both of those stretches of time, it wasn’t even hard, really. Not in the way I always imagined it being hard, anyways. A few days of (granted, extreme) physical withdrawal, an occasional thought of “Huh. I could really go for a drink right now.”, but no problem pushing those thoughts away. I went and sang sober karaoke, soda water and lime on the table beside me. I had no problems going to my favorite bar and drinking an unadulterated ginger beer while I wrote. I could easily sit with friends who were drinking and have a coke. I drove a friend around to breweries, having a sip of each so we could discuss flavor notes, but not wanting more than that taste.

But it’s all part of the cycle, and the simplest explanation of my specific cycle is chronic pain and fatigue to depression and anxiety to alcohol. Because though I am continuing to wend my way down this unnecessarily convoluted medical path, NSAIDs haven’t touched this specific pain and booze has always been an awesome and almost immediate (if temporary) solution for both pain and anxiety for me. It certainly doesn’t help the fatigue, and seems more or less ineffective for the depression either way (though I know it’s a depressant), but for pain and anxiety….

When I was in urgent care last week, a nurse came in, woke me (sweetly. Every time this particular nurse woke me up she did it with this specific affectionate chuckle that made me feel like probably one of her kids used to sleep like I do, ridiculously contorted with impressive bed head. Or maybe I’m just that freaking awkwardly adorable when I sleep.), took my vitals and for the first time that evening asked the question, “What’s your pain level?”

“Five.” And then quickly, “But that’s my normal.” Actually, I realized, that was low normal. This might even be a 4. How long had it been since I’d had a non-alcohol-related 4? Maybe after six weeks the Lupus meds were starting to kick in. (Maybe it was just those pills they kept bringing me for the shakes.). My normal for the past few years has been hanging out in the 6-7 zone, with peaks up to 9.

It’s about that third day at an 8-9 that the devil I know starts to look awfully kind.

And autoimmune and mental health are both things that when it comes to medication, at least, it seems like everybody’s just kind of flying by the seat of their pants.

Lupus meds: “Well, we have no idea why this anti-malarial works for people with Lupus/RA, but it does for a lot of them and we’ve been using it for forty + years, so why don’t you try this and we’ll see what happens? It’ll probably take three months to even start working, though. And it has some unpleasant side effects like splitting headaches, but those usually get better after a few weeks so don’t give up. Oh, and it has a tendency to cause macular degeneration so make sure to get those eyes checked, yeah? It’ll probably also kill your already non-existent appetite. Now take two of these every day for the rest of your life. Come back in three months and we’ll see what’s next.” (One of my friends recently looked it up, and they HAVE finally figured out why Plaquenil works—“It just shuts off inflammation on a cellular level.”. OK, well what does THAT mean, exactly? Isn’t some inflammation important? I feel the same way about immunosuppressants. So my choices are chronic pain and fatigue or more regular infections? I mean, I know the goal is to find some kind of balance where your body can still fight other stuff but stops fighting itself, but how do you figure that out?) Plus the last time I was on it for any extended period of time, they put me on something ELSE in conjunction that was terrible, and then we were starting to talk about the third addition when my insurance situation changed and I had to make some new calls.

Antidepressant/anxietals: “Well, there are these three we use most of the time. We’ll just pick one, you can try it for six weeks, and if it doesn’t help we’ll move on to the next.”

“Are any of them better or worse for pain as well?” (I’d asked about pain meds and the response I got was basically, “If the NSAIDs aren’t working, our next step is usually opiates, and with you recovering from alcohol addiction, I really don’t want to put you on anything potentially habit forming.” “That’s fine. I don’t like the way opiates make me feel anyway, and I DEFINITELY wouldn’t want to be on them long term.”).

“Yeah, but that’s a different one we use for fibromyalgia sometimes, and it’s one we can only prescribe if we’re sure these don’t work.”

“OK then, if we’re just drawing names out of a hat here let’s go A or C. I have family that’s allergic to B.”

“A it is! Take half of one of these every day for a week then a full one, and we’ll meet back up in 6 weeks and see how it’s going. And make sure to tell the people around you you’re starting it, in case you have any negative mood changes.” And if A doesn’t work it’ll be C for six weeks, and if C doesn’t work it’ll be B for six weeks, and if finally at the end of all that it’s still not going anywhere we can move on to other options, maybe even one that will help with pain.

 

There’s no end in sight. And there’s this treacherous little voice in the back of my head that says, “Look, baby, there’s a grocery store two blocks away. I could have two shots of whiskey in my belly in fewer than ten minutes. Pain diminished, anxiety relieved, presto.”.

There’s even part of me that feels like it’s a valid argument, and that ethanol would be a fine solution IF I could stop once I started. IF two shots was ever enough. IF alcohol didn’t mess with the effects of most actual prescribed medications. IF I didn’t happen to be the convergence of two long genetic lines of alcoholics. And IF I could quit/take a break when I realized it was time without either four days on heavy sedatives or full DTs. If, if, if.

 

On the next installment: Something fun. I dunno what it’s gonna be, but it’s gonna be something fun, dammit.

Hearts,

Kat!

 

Here goes nothin!

OK, so I attempted to type this all up from the very beginning in order to present you with a linear storyline. However, that failed spectacularly because a) I’m not exactly sure where the story begins, really, and b) I am an obsessive self-editor. Given the opportunity to reread whatever I wrote at my leisure, I undoubtedly would do so, over, and over, and over again, each time changing a word here, a comma to a semicolon there.

In short, it would never end up anywhere but behind my eyelids and on this specific screen.

So, I’m gonna take a run at this as a one-shot-per-entry situation, and we’ll see how it goes. I apologize in advance for any grammatical, punctuation, and spelling errors.

The first (of the middle) starts here:

 

I called an old friend back home a couple of days ago. “Hey! How are you?” We chatted for awhile and then it was my turn.

“Well, I have to preface it. See, I wanted to text you earlier but realized that the message would require more exposition.”

Used to my strange introductions to topics after a decade and a half of friendship, curiosity just tinged her voice as she replied, “…OK…”

“Well, see… The message was going to say, “It’s a dark, dreary day in Seattle and I’ve decided to listen to Damien Rice. Maybe they WERE right to keep me under suicide watch Friday night.””

A pause. A bit of a sigh. “Yeah. Yeah, Kat. That’s going to require a bit more explanation.”

 

Let me assure you, I’m not suicidal. Severely depressed? Sure. Cripplingly anxious most of the time? Yup. A regular victim of chronic pain and fatigue? For the majority of my life. Addictive personality with a strong proclivity to self-medicate with alcohol? Oh, most definitely. Hell, after a year of unsuccessfully trying to quit long term, I’m even getting comfortable with calling myself an alcoholic. Worrisomely self destructive? At times. But really, NOT actively suicidal. In fact I’ve been seeking help for all of those things, and if braving the hullabaloo of the medical industry isn’t proof enough of a strong will to live, I don’t know what is.

I’ve spent most of this year struggling with quitting drinking. Add to that a lowered seizure threshold (most likely caused by the ol’ Lupus), and I’ve been to the ER once (the first time, when I tried to quit on my own and ended up having a full blown seizure on the sidewalk) and urgent care twice to get medical help when I realized I’d fallen back down the rabbit hole and it was time to climb back on the wagon. Last Friday I went to urgent care for the second time.

They brought in all the forms, including the yellow one with all the psych questions on it, and as I filled them out I was suddenly fed up. I’d spent all afternoon trying to get this done in any other way (called my PCP, and other PCPs, and tried to get into a bunch of different substance abuse programs), and yet here I was, filling out paperwork in a hospital gown on a hospital bed in urgent care of all places, where I mostly felt I was just wasting their time. Even though the care I needed WAS urgent, IS urgent, there’s really only a limited amount they can do about it. But none of the specialists were taking the bait.

And then came the yellow sheet, the one with all the various mood/psych questions. (Does everyone get those, or just people with history of mental medical issues?). Now, I need you to understand that I’ve filled out approximately a kazillion of these in the past few months between seeking my own therapy and dealing with my own chronic illness. And they’re irritating. While I understand the importance of them, the questions always come across as simplistic to me. Almost… Condescending. I know they’re written for the everyman, and non-native speakers, and all of that important stuff, but most of the time I just want to look at them and say, “Listen. I’ve been doing this almost two decades. If this stuff wasn’t an issue, I wouldn’t have told you it’s an issue.”

Of course I didn’t take my frustrations out on my nurses or any of the other medical professionals—I am the sweetest, most obedient patient of all time. I’ve watched nurses save a lot of the people closest to me. Nurses do NOT need my shit, and they will never get it. But I was a complete smart ass on the yellow sheet.

The three most memorable answers to the familiar questions:

Q: Do you ever want to go to sleep and never wake up?

A: It’s November in Seattle, guys. Don’t YOU?

Q: Do you want to harm or kill yourself?

A: If I were suicidal I wouldn’t be in this room right now. I would be dead.

Q: Do you have access to guns?

A: I mean, not like in an immediate, tangible sense, but this is America. I’m pretty sure we all have access to guns.

 

Yeah. I did.

 

Since I’d also circled threes on just about every other question (I am honest on these things, at least.), about five minutes later the doctor comes in. “Well, it looks like you’re staying with us at least twelve hours.”

Then they flew into the room and took EVERYTHING. My stuff, medical stuff, everything. And they spun the bed around into the middle of the room to face directly out the open door.

“What have you done now?” asked the friendly male nurse who had gotten me checked into the room. Once everything was arranged he brought in a pile of magazines and set them unceremoniously on my bedside cart. “It’s not much, but it’s what they’d let me bring.”

I wasn’t allowed to close the door, obviously, and there was a rotating cast of characters who sat in a chair just outside, watching me try to sleep in a hospital gown in an uncomfortable urgent care bed. Nurses came in on occasion (every time I managed to drift off to sleep, it seemed) to check my vitals and give me medicine to help me sleep and ease the start of the alcohol withdrawal I had come for help with in the first place.

I was there about sixteen hours all told. And one of the funniest things about it to my morbid mind is that they sent me home with three bottles of sedatives to get through the withdrawal. “We have to keep you twelve hours because we’re afraid you’ll kill yourself or hurt someone else. Now here, take these three heavy sedatives and go quit drinking.”

So, I rallied the support system (which is really, really strong.), brought the sedatives home, and quit drinking. For the third time this year. I finally have an appointment to be ‘assessed’ at a rehab place, hopefully to be placed in out patient maintenance care, because while I’ve managed this for a month or more at a time this year, it’s clearly not going to be sustainable for me to do it on my own. Here goes.

 

On the next installment: Medical Professionals Are Awesome (But the Medical Industry Sucks); or possibly: Living With Chronic Disease (Listen, Dr. House, Sometimes It’s Lupus).

Hearts,

Kat