Health & ME/CFS

How Did This Happen?

Each day, I wake up & it’s the same, always the same:

Make tea. Eat a Larabar or Luna Bar. Must have padding in there. For what’s to come. The meds, and there are so many of them. They’re sneaky. You start out with just one, but then over time, more get added:

  • Lyrica:  Big-Pharma’s answer to FMS. It does help with the pain & complete lack of energy. Instead of 0% of my previous level of energy, I have 5%. Occasionally, 10%.
  • Synthroid & Cytomel, T3 & T4: Thyroid hormones for hypothyroidism.
  • Zantac: an antacid to help prevent a gastric bleed from all the meds, as well as “fix” the reflux.
  • Celebrex: an anti-inflammatory, a NSAID, for the arthritis, and it also helps, some, with the migraines. It’s the bad boy for causing gastric bleeds & the primary reason I need the Zantac.
  • Enderal LA: a blood pressure med. To help with the migraines, and for BP stabilization.
  • Oxycodone: for the never-ending pain.
  • Zoloft: because every person diagnosed with CFS/FMS in America takes some type of antidepressant, even though we’re not depressed. Something to do with faulty brain chemistry – I used to remember the reasoning. I’m trusting myself that I did at one point remember the whole business of serotonin and thought it was an okay thing to do.  I did, with doctor approval, cut my dose in half over the last year. (And if you’ve seen the ads for Cymbalta, the latest of Big-Pharma’s children for CFS/FMS, you might be asking why I’m not taking that. You really don’t want to ask that question.  Short answer: It nearly killed me. Twice.)

Swallow those, follow by

  • Wild Salmon Oil (my Omega 3- & 6-s)
  • Evening Primrose Oil (for PMS), taken now, first thing, with my bar breakfast, so I can take the bad boys:
  • Valcyte: the outrageously expensive anti-viral that we’re giving a trial to, though they carry risk. It’s “they” because the instructions are to  take 2 – 450mg tablets together, with a high fat meal. They are the riskiest of the bunch, multiple “black box” warnings. But, they’ve definitely helped with cognitive function. And I thought they were starting to help with the exhaustion, but then we hit a little bump in the road. A “flare”, as these “bumps” are called. Personally, I think the Epstein-Barr Virus & Herpes varieties that reside in my body got wind of the fact there was a new sheriff in town, and are putting up a bit of a fight. 3 to 6 months, that’s what the Stanford study said, for the most effect to be felt. It’s been 2, 2 1/2 maybe.
  • Finish off with Zenpep: a combination of pancreatic enzymes, useful for digesting fat & protein when you’ve had your gallbladder removed and you have leaky gut syndrome and basically little proper gut function. (and does anyone besides me think Zenpep is the stupidest name ever?)

And I ask myself again… how did this happen?

I raised organic gardens, organic meat, looked to herbal medicine for answers.

I had my first child naturally, refusing meds the doctors wanted to give me because she was taking forever to make her way into the world, or meds for the pain or constant puking, because it was so important to do it naturally, for her sake as well as mine.

I was so turned off by the medical machine that I had my second child at home with a midwife, took herbs as treatment during my pregnancy & to stop the bleeding afterward… and yet, here I am. Swallowing pill after pill, just to squeek through the day.

Yes, we’ve tried stopping them all, or at least all that it’s safe to stop. Several times, actually. Not good. I always wind back up on them again. And I do reduce things, reduce dosages, consolidate two meds into one med, periodically. In the last year I’ve eliminated the methadone entirely (big YAY for me!), cut the florinef to a half tablet every couple weeks instead of a whole one daily, cut the zoloft dosage in half,  and consolidated the gabapentin & Lyrica into just Lyrica. But then we added the Celebrex, and then the Valcyte.

Most of the time, I just swallow my handfuls of meds without thought, other than to be sure everything is there and accounted for.

But once in a while, it comes creeping up from wherever it is I’ve stuffed it, the voice that screams at me:  “What the hell are you doing? You are all about the all-natural and organic! You wash your hair with organic shampoo, for goddess’ sake!”

But what other choice is there? To live constantly in bed instead of getting up and down out of bed repeatedly, and once a week or so managing a trip to town (with the help of additional meds, of course, to make sure I don’t shut down mentally while driving the car) ?

My ex-pain-management doctor used to end every visit with the same question:  “And are you sure, really certain, that the meds you’re taking right now are doing less harm than good? Are you sure they’re really helping?”  It wasn’t a rote thing, he looked at me very intently when he asked, and even though he asked it at every visit, it was always phrased just a little different, and he always expected a real, honest answer – there was no blowing off the question.  I liked that.

It’s a question I’ve remembered, and ask myself all the time. Am I really sure I need x, y,  and z? What’s the least amount of whatever I can take and still sleep through the night? What if I skip half of this tonight and see if it makes me more or less tired tomorrow?

There are what-if’s I try to stay away from:

  • “What if, when I was on the IV Rocphin for the Lyme, I’d kept up taking all those handfuls of complementary herbs, even though they were expensive as hell & made me want to puke?   I don’t know.
  • What if I had all the money in the world and could afford to go to one of the CFS/chronic Lyme clinics, and went through all their rotating rounds of antibiotics and thrice-weekly IV’s of vitamin and mineral and who knows what cocktails?  (That thought makes me want to puke… or maybe it’s just the salmon oil trying to come back up.)
  • What if I had stuck with the mainstream doctor instead of the LLMD (Lyme Literate MD) who put me on the IV for a year?  (I think I know the answer to that one, and the picture is an ugly one – the Lyme would have gone untreated for even longer and I’d have had more of the neurological decline I’ve read so much about, and it would not have been a good thing. )

A lot of I don’t know’s. But it’s good to contemplate these things occasionally. Ironically, this post was brought about by a discussion had through Facebook – a newly diagnosed woman, who was feeling very overwhelmed and isolated, was trying to decide on trying Lyrica. It was knowledge of the history of Lyrica and it’s predecessor, Neurontin, that got me thinking about how much I’ve learned about meds.

How much I never would have guessed I’d know.

Nor did I want to know.

But I do.

2 thoughts on “How Did This Happen?”

  1. I take fewer meds than you do; but I ask myself the same questions. And, of course, everyonce in a while-about every month and a half, for some reason-I decide to try and stop everything. I convince myself that the pain “isn’t that bad,” or “I managed some how before” Before. Before the little grey and while ball showed up on my MRI, before I was cut stem to stern, and before I allowed for poison to be pumped through my veins for almost 5 months. So I stop, and by the next day, I am crumpled up on the bed, puking, wishing that someone would “Just shoot me and put me out of my misery.” My questions run the same as yours-“What if I hadn’t worked night shift all of those years?” What if I had stood up for myself a few times, or even just left-could it have ended up any worse than what now is?” and so on, and I have the same answers as you do-“I don’t know.” But having you to talk to, and having your words to read is wonderful therapy, with no bad side effects that I need “padding” for; I talk to you, read your words, and know that I am not crazy, or “anxious” or “exaggerating,” and most importantly, I know that I am not alone.

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    1. No, you are not alone – I am always here for you. And I always will be. And I know your pain is tremendous, and can’t imagine what you went through – it’s my worst nightmare. I’m so sorry we are both so sick – I wish we had known each other before being sick became a full time job.
      But we stand beside each other now, believing in and supporting each other. That’s what’s important.

      Thank you, Dawn, for all the long messages, for sharing everything we’ve both gone through, for listening, for all the loving thoughts, for all the lifting me up you do. Probably more than you know! 🙂

      Big, big, but oh so gentle hugs! And oceans of love…

      Like

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