Friday, March 29, 2013

Day Four of Treatment: The Down and Dirty

See also: how to live alone while treating late stage chronic Lyme disease.

Yeah, it ain't easy being green. Kermit had it right. In my former life ... the healthy one where being a single mother of four; graduate student; teacher; and "Girls on the Run" coach was no big deal, I had some mad crazy organizational skills. I could be at work on the phone w/the parent of a student, on hold for a convo w/a teacher of one of my own sons, and grading papers and entering grades into the computer ... while planning dinner in my head and deciding what I was going to wear on a date that weekend. For starters.

Now? Well, let's just say that the supplements that arrived last week are still sitting on my counter and I still haven't been able to truly read and comprehend my LLMD's treatment manual. And it's well written ... this former teacher can hardly find a "whoops" although I'm having to index things with those nifty color coded Post-It sticky arrows for ease of reference. (Wouldn't have needed to do that in the days of yore. I'd have just remembered the page numbers.) My PLAN was to put all my supplements into a month's worth of plastic pill containers: one set to take with breakfast, one set to take with dinner, and one set to take at bedtime. Once cataloged, off they'd go to the fridge so my prescriptions could ride shotgun on the kitchen counter. Yup.

I'm on Day Four of treatment which means there are only about 1,091 days to go. Supposedly this gets easier as one gets further into treatment. Yeah. We'll see. According to the "Treatment Manual" days 4-6 of any new med can usher in a pretty big herx. That's "Herxheimer Reaction" for the uninformed ... the mother of all "die offs." Yup. After about four days ones blood levels contain enough ammo to CLOBBER those spirochetes and they do not go quietly into the good night. They kick and scream causing pain, vertigo, possible seizures, muscles spasms, loss of vision, and lots of "spin the wheel" symptoms. Or nothing at all. "What did she win TODAY, Johnny?"

Yesterday I phoned eight pharmaceutical assistance programs as I can't pay the $560 co-pay for ONE of my drugs. ONE drug. Others get this drug for a mere $8 or $30 co-pay, but not me. I guess I'm lucky as SOME insurance companies don't cover it at all and out of pocket it's $1,800 every four weeks. Woot. Go me. And geesh, I HAVE insurance!! But I can't afford my co-pay. Is there any sense on the face of this EARTH why erectile dysfunction is covered by insurance but chronic diseases aren't???? Wait. Lemme guess. Those higher up on the Big Pharma food chain are not just sharks, they're boy sharks. And yeah, I don't qualify for any of the assistance programs.

Bad night's sleep last night. Bad, bad, bad. I dreamed a former LLMD emailed me to tell me I was never going to get better. Yeah, I sweat all night and no, it's not menopause. I paused and then stopped that nonsense years ago. It's Babesia, a co-infection of Lyme ... the source of many drenching night sweats. The kind that would make you get up and change the sheets if you had a sleeping partner, or the kind that demand you roll over onto the dry spot if you're single. I've got it easy.

So I really can never tell if I can't sleep because of insomnia, or Lyme, or Babesia (really getting drenched w/sweat is startling) or just plain old free floating anxiety ... which isn't really free floating at all, and is directly nailed to my diagnosis. But I didn't sleep ... the sweaty bottom line.

My goal for the day was to put the above mentioned supplements into their little boxes, tuck them into the fridge and let Big Pharma hang out free range on the counters. Yeah. But it's Day Four. DETERMINED to beat this into submission I got up promptly when my first "drug alarm" rang to go take the round one. I've got this down now. Use the restroom, brush my teeth, feed the cat, take the meds, eat some nuts, go back to bed. After feeding Larry I marched myself right into the kitchen, filled up a glass with water, slugged back 2 pills with the water, and in true defiance pounded the glass down hard on the counter only to realize I'd taken twice the amount of my meds. On Day Four. Not feeling good about this I consulted with the "Peeps" (some of my Lyme BFFs) and decided it wasn't time to call my sons and tell them I love them one last time. No need to wake up the Designer in CA and have her wake up Mr. My Baby so his Safta could tell him how very much she loves him and how very much she will miss him. No need to call the School Psychologist to tell her to remember to let my soon to be grandchild from Ethiopia know I have prayed for him since his father was about 4 and I was ready to shoot him ("may G-d have mercy on his children.") No need to remind her to remind HIM that yeah, his Safta knows the angst of adoption. No need to fill Larry's dish so he'll be ok until someone finds me lifeless because the reality is, a double dose isn't going to kill me, I'll just wish it would.

I loves me my Peeps. They graciously commiserated with me and told me they'd done the same thing. We bantered about whether or not I should take my dinner time dose later on. And then we bantered until the pharmacy was open. Seriously ... shop locally. Screw those one stop toilet paper/lipstick/candy/trashy magazine/drug stores and get thee hence to a local pharmacist. Really. Why? Because I said so. Because I LOVE "Skip" and he tells me whatever I need to know in his lovely boy-next-door midwest way. He reassures me. He explains things to me. And at precisely 9:00 AM this morning he told me I was not going to die, but I probably should be a little bit more organized so this didn't happen again. And not to forget to take my evening dose because those blood levels gotta be high to kill off those little buggers. The Peeps concurred and again reassured me. But Day Five and Six lay in wait.

So I decided to do exactly what one of my "pins" on Pinterest says. I'm going to follow the advice I'd give to a friend I love. What WOULD I tell a friend who is healing from late stage Lyme and had just double dosed on Day Four? (One I REALLY love.) It might go a little like this, "You what? You're joking, right? Oh. OH. Whoa. Yeah ... well. Ok. You DID call the pharmacist and you're going to be ok? Yeah, I know. I meant you're going to live. That's good news, right? Ok. I'm going to believe that one for you today. It's good news. I love you, your kids love you, your grandchildren love you, there's work for you to do in the world, you count, did I tell you I love you? Good. Go back to bed."

And I did just that. I went back to bed until the phone rang ... the surveyor was on his way to resurvey my property a third time because my swell neighbors keep pulling out the property line stakes, asking me how it happened, and promising to build a fence on my lot. Really. Stick a fork in them. I'm done. So I dragged myself out of bed and got dressed (screw being presentable) and walked the line w/him. I took pictures of the lot markers buried in the ground. Took photos of the THIRD set of markers in place and then, lo and behold, a knight in a pick 'em up truck arrived with metal stakes which he pounded into the ground while the surveyor watched. Hopefully The Lawyer will send off a nastygram worded ever so nicely which gets across the following point. "IF YOU HAD WANTED THAT PROPERTY YOU SHOULD HAVE BOUGHT IT." But he'll make it sound nicer than that. Hopefully he'll sign off with, "Ms. James considers this matter done and will no longer discuss this with you. Should you have any questions regarding the lot line, have your lawyer contact me." Yeah. Go Lawyer ... and how I love you. WAY back when you were four and I started praying HARD for your spouse and children I knew your career had been revealed. I mean what four year old innocently asks his mother, "Do you THINK before the words come out of your mouth" and DOESN'T become a lawyer? Really.

So I appeared disheveled but normal for about an hour and have been in bed for the duration (and intend to remain here.) I did get up to drink my concoction of oils and powered supplement and realize that I DO prefer adding strawberries to adding blueberries. I actually ate lunch ... and in a couple of hours I'm going to make myself some salmon and the requisite "Miracle Salad" (which really is quite good.) Then it's OFF to the detox bath for an hour where I hope to sweat out some toxins and a quick shower to ensure I don't have to sleep in them.

Then maybe a little bit of reading, perhaps a convo w/Vito, and then it's lights out and ceiling fan on.

My goal for tomorrow to put the above mentioned supplements into their little boxes, tuck them into the fridge and let Big Pharma hang out free range on the counters.

Stay tuned.


  1. Laughing my ass off. Reality is you really are a funny girl!!

    You will beat this!

  2. Thanks. I intend to ... or die trying!