Documentation: Updating supplement sheet, showing changes

I switched to a new insurance company that might provide dental care. I haven’t tried them on that yet, but I will. It’s on the agenda for this year.

They want to pre-authorize my main neurological med, Savella. This is the main med that keeps my pain under some kind of control most of the time. If it weren’t for Savella, I’d simply not have survived the past 5 years.

Somehow, the pre-auth requirement has thrown my pain specialist into a tailspin. He wrote a prescription (although I had refills) and mailed it to me, then asked me to come in to see him (2-1/2 hour drive, involving an overnight stay to be there in the morning, which is when  his office hours are) in order to discuss this, before he’ll initiate the pre-auth paperwork.

I could get testy about that. It would be so easy.

What I did was refer, by date, to the first visit, when we discussed that first for 10 minutes. I guess his notes from that got lost.

This is where I stay off the computer for a day while I calm down, remind myself that it would not actually be in his best interests to throw me into a bottomless lake of fire, and it would probably not be in my best interests to beat him to it and kill him first.

When you have a brutal pain disease, and you have a med that works enough to let you have a life beyond fighting for the next breath and waiting for the lack of food and crazy stress hormones to kill you, and there’s a situation that threatens to take it away, the consequences of losing the med mean that life will descend into a level of hellishness that most people can’t even imagine. Thus, those of us who’ve found a med that works for us, enough to let us eat and move and think and speak — we get pretty intense at the prospect of having that med taken away.

This is not addiction. It never was. It’s true and valid need. Big fat difference.

Funny how it’s easier to believe when we’re not talking about narcotics, isn’t it?

> If you’re serious about managing the narcotic disaster in this country, you have to let yourself remember that both addicts and painiacs NEED TO BE PATIENTS. They both need CARE. Neither they, nor their doctors, nor their communities, are served by being turned into CRIMINALS.

> REHAB WORKS, when properly funded and designed. THAT is how you get addicts off of contraband drugs.

> PAIN MEDS WORK, when appropriately prescribed and used. THAT is how you keep pain-patients functioning as well as their diseases permit.

> There is some logistical overlap at times, but ADDICTION AND PAIN TREATMENT ARE NOT THE SAME THING.


Okay, stepping off that soapbox. Feel free to copy/paste the whole blockquote as much as you like.

So, anyway, I’ve calmed down about my doc’s curious response to doing a pre-auth on my longstanding pain med.

This is really important: from here on, I’m talking about MY ANXIETY, not MY PHYSICIAN’S REALITY. This is pretty normal and natural, and I’m leaving it in as a straightforward demonstration of what my brutally nervous brain can do to in the grip of PTSD from decades of questionable care. So, here’s the anxiety-driven, defense-at-any-cost response. (For more on the reality, check my future posts on his doctoring.)

I remembered he’s a geek. More than that — he’s an ubergeeknerdyguy who’s been a high-end specialist for a very long time.

Geeks are brilliant in their particular slice of the world, but can be surprisingly insecure and nervous about stepping outside it. Also, sudden changes can be surprisingly disorienting to them. (Those of us with ANS problems can sympathize.)

Things that might rattle an ubergeeknerdyguy about this and set off mental alarm bells:

  1. My med was covered before, but now it needs pre-auth. Why? /dingdingding!/
  2. My diagnosis was wrong, and it’s possible that my treatment will change, but we don’t yet have enough info to decide what’s next. Feels like change is coming upon us too soon! Not enough information! /dingdingding!/
  3. Winter. Nobody over 35 is at their best here in the winter. /dingdingding!/

Old amber-screen lettering showing *TILT* like on old pinball machines

Obviously, to those of us who don’t inhabit the intellectual stratosphere, the first 2 issues are pretty straightforward (1: Cuz American insurance is funny like that. 2: Doesn’t matter — stay the course until there’s reason to change) and the 3rd is just life.

To an ubergeeknerdyguy who’s accustomed to controlling outcomes that nobody else can bear to deal with, it’s too much uncertainty to handle at long distance.

So, I’m getting my documentation ready:

  • I’ve got another copy of the letter from the ins. co. explaining they just want pre-auth.
  • I’ve got the current formulary showing that Savella is covered.
  • I’ve updated my supplement matrix showing the changes for the winter, which does 2 things: shows I’m really working on this “being functional” thing, and that I’m taking my chemistry seriously, not being passive and expecting him to do all the work.

In fact, the last point is so useful, I’m going to link my matrix here for anyone to crib from:

Isy’s Whole List of Supplements and Topicals (PDF)

Now my secrets are out! 🙂 You can now see exactly which brands I use and what I find that each thing does for me. (And, if you count up the number of capsules and pills this makes, you also know why it can take me over half an hour to get my pills down!)

Interesting points:

  • The first column shows changes (represented by a delta sign at the top). Docs LOVE being able to see at a glance what’s new and different.
  • Blank spaces are shaded out. This makes it obvious nothing’s intended to be there. (Common sense is not the same as intelligence, remember. Be as clear as possible.)
  • I put notes at the bottom putting it all in context.
    • My neuro supplements went down when I got my antioxidants dialed in to reflect the results of my blood tests. In other words, balancing my antioxidants really helped my brain!
    • My neuro supplements, along with everything else, have gone up to mitigate the brutal effects of cold and snowy winter.
    • This is not the time to make changes. Having said that, I’m not opposed to changes — just not now. (It’s good to explain, courteously and clearly, what your boundaries are around treatment.)

Detailing those changes tells the doc that I really do pay attention to what I’m taking in. I’m not a faddist; I’m diligent and determined to manage this as well as I can. Just from this one document alone, that’s reasonably obvious. Displaying this characteristic (or set of entwined characteristics) helps my doctors take me more seriously.

The real fun of this symptom complex: trying to keep others taking me seriously even when I realize I’m in such a panic my brain explodes. Woot!

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2 Replies to “Documentation: Updating supplement sheet, showing changes”

  1. Nice blog. Some really interesting supplements. It amazes me how in the US,the lengths you have to go to to get prescriptions. Different system here thankfully. Also it upsets me to see how in some countries pain patients are compared to drug misusers, Polar opposites. I wonder would you not be concerned about serotonin syndrome with the combination of savella, at Johns wort, 5htp and phenylalanine? Also how do you use the lemon balm? Thanks.

    1. That’s an excellent question. Thanks for raising the issue.

      I’ve had serotonin syndrome a couple of times, from meds. If I hadn’t been living with a good friend the first time, I don’t know how I’d have survived: I didn’t hurt, but neither did I care about anything, which is antithetical to self care. I’m diligent about noting and recording how I’m doing, so I got back on my daily logs and learned what the objective measures were for me of serotoxicity. (It was everything on the list except rage.)

      For me, the white-out quality of my perceptions is the earliest clue that, one way or another, I’m getting serotoxic.

      As the PDF says, I check my supplements regularly. I don’t like to go up (or even down) much without having a very good reason, and I don’t like going past twice the usual dose — just like with medications. I worked out the neurotransmitter supports by using that as the underlying strategy, and when one thing didn’t do it at a reasonable dose, I’d add something else and track my response, then proceed tactically step by step on this basic principle of “some is good, but more is not necessarily better” — with the necessary rider, “neurology has a lot of moving parts involved, so simple solutions might not be enough.”

      I used to use just St. John’s wort. Then, when my good brand got bought and went bad, I thought it over and tried 5-htp with good results. Then I had to raise the 5-htp. Then even that wasn’t enough, and I thought it over, and tried re-introducing st john’s wort, after finding a good brand. A few years later, my jaw-clenching was getting out of hand and my teeth were really doing badly. I looked into it, realized I might have an imbalance of serotonin and dopamine causing that (I had to remind my psychologist of this, but he verified that that was a real issue for many people) and at that point, I added the dopamine. The jaw clenching is much less, but not gone; however, I don’t want to take more dopamine, because I get that slight sense of fuzziness if I do, and I don’t want my symptoms to proceed beyond that.

      So, this is NOT fixed in stone, and I ALWAYS test and retest each addition, ONLY adding it after doing research about its expected effects and getting some sense of its chemical shape and behavior, so I can have some idea of what it might do in relation to the other things I’ve got going on.

      It’s a lot of work! Worth it? Well, this blog is my best answer. I have to be able to think and type to do it, and I can’t do either when my neurology is out of control.

      As for the lemon balm, I’m pretty ad-hoc about it. I’m content to get a bottle of good extract, put a dropperful into my palm, wipe it onto whatever hurts and be sure to get up the nerve path to the next big joint nearest my center, add a topcoat of emu oil to make it suck into my tissues, and let it dry in place. If I were better at planning ahead, I might soak a teabag of it (you can get lemon balm tea), let it cool in the fridge, and use it as a compress. The extract is portable and quick, so that’s my go-to. If I were more particular about my appearance, I’d probably work on the compress angle.

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