Go ask Alice (or Bethybright)

You know the song, I’m sure you do. The one about how one pill makes her larger and one pill makes her small? I used to love singing that song at karaoke night in bars. You know. Back when I went to karaoke night at bars and stuff.  These days, though, I’m living it. 

I started taking a new drug to help my, um, bladder issues. (It should be noted that my family members were simply aghast that I had no scumbadee – made up word my family uses – to post publicly on the interwebs about my pee problems. Oh well!) Anyway. That drug actually works pretty well. I don’t pee my jammies nearly as often. I only get up once a night to use the bathroom, mission accomplished. 

Well. Sort of. Because now this same drug makes it actually difficult for me to urinate. It kind of feels like having an UTI but without the pain? So going takes forever. You just sit and wait. And wait. And wait. Until something finally happens. I read the patient information leaflet and this side effect is one to “contact your doctor” if you experience, so of course I emailed The Great Scott post haste. Of course it was the ever “helpful” nurse Carol who responded to let me know that she had sent in another script for me that should help that “can’t pee when I have to pee” feeling. Ok then. Drug number nine. I’m on it! (It’s also probably worth noting that this drug comes with many precautions one of which tells me to contact my doctor if I have an erection that lasts longer than 4 hours. So there’s that.)

One of those two drugs has the side effect of making me incredibly thirsty all of the time. I can’t remember which one it is – there are so many of them now. But this dry mouth is intense. Like stranded in the desert for months on end kind of dry mouth. The kind of dry mouth that wakes you in the middle of the night to chug a 33 ounce bottle of water. Did I mention these drugs are to help control my problems with peeing? Right. Alrighty then. 

Then there’s the walking drug. I freaking love the walking drug. It actually works. It helps me to walk almost like a normal human! The struggle is, insurance only approves you for one month of the drug as a test to make sure it works. I guess since it costs me $250/month it costs them something insane and outrageous so they aren’t handing that shit out all willy nilly. I got my 30 days worth, two small white pills every day twelve hours apart. Easy. 

Except that I happened to notice while taking my magic walking pill this morning that the bottle is running pretty low. I got a bit nervous and dumped out the pills in my palm to count them. Eight days. I have enough pills to walk for 8 more days. 

The insurance company my HR folks changed to last year is CVS/Caremark. Yeah. They suck. Really bad. I have to get another pre-auth for a longer term supply of this magical walking drug that goes through the same two week review that every pre-authorization goes through. But I only have enough for 8 days. I’m beginning to feel frantic.

I will call them on Monday to inquire about the timing on my refill which will likely be another hour of my life spent on the telephone with the world’s absolute worst customer service that I will never get back. In the meantime, I’m all over the internet asking Google “can I take one dose of ampyra a day and still walk well?” The google is about 50/50 on that one. Therein lies my problem. I may not get my refill authorized before March 16 which is kind of a critical date for me. 

See, I was so excited that my new walking drug actually helps me to walk that I made plans to visit my company’s home office in Atlanta to do a presentation to leadership in person instead of on the phone. I know this kind of trip will lay me out for a week afterwards –  but the timing was kind of critical. 

If I don’t go now, it’s hard to say when I will be feeling well enough to travel for a while. You see, I get my last Tysabri infusion on March 8.  After that, I am going DMT free (or going off of disease modifying drugs, what I like to call the the BIG MS drugs) for three months to flush my system so that I can hopefully get on the new goo that THe Great Scott is so excited about (the new drug everyone is counting on being approved by the end of March). I’m not sure what those three months are going to be like. It could be rather unpleasant. I have no idea what to expect. 

By March 16 and 17 then, by my calculations, the following  cosmic details all come together that should create the best possible trip conditions for a visit to the home office: 

  1. My Tysabri should have kicked in by then (as much as it ever does since neither me nor TGS thinks it’s helping me so much) because it will have been 8 days or so post infusion. 
  2. My new walking drug will make airports and our giant corporate campus less deadly for me!
  3. It’s not likely that it will be Africa hot in Atlanta quite yet, so weather conditions will be suitable for someone like me who can’t function well above oh, let’s say 70 degrees. 

But now I am faced with a pill rationing decision.  How important is it that I can walk between now and March 16? Should I save my precious walking pills just in case I don’t get my refill approved and delivered in time? Should I see how I do with taking one pill a day? But what if that doesn’t really work and then it’s like I’m wasting those pills that I might need for those days later in March when I know I definitely WILL need them. 

This, my friends, is what it feels like to go down the MS rabbit hole. Which pills should you take? Which pills will the insurance gods deem you worthy of and when? Which pills will actually work? Is it worse to be thirsty like a castaway on a desert island? Or is it worse to pee a little when you don’t really want to? Or is it worse to feel like you have to pee but then not be able to pee when you think you have to pee? Will my life grind to a screeching halt when I am forced to go DMT-free? Will my bedside table always look like that?!

I’d like to go ask Alice. I really would. But I’m betting she has no clue at all. I’d probably have to wait for a pre-authorization for a discussion with the white rabbit before anyone will even let me ask Alice anything at all. 

And you wonder why I’m tired all of the time? It. Never. Ends. 

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