Friday, December 21, 2018

Wednesday, December 19, 2018

My Kingdom for some Sleep

This week a great fear finally happened: I ran out of options.

One of the most debilitating aspects of my Fluoroquinolone Associated Disability (FQAD) is a complete inability to sleep. You see, I have brain damage that impacted my GABA (aka. “body-calm-down-and-sleep") system.

So Hi-Ho, Hi-Ho, to the sleeping meds I go…

But over time Ambien quit working.

And then the sedating antidepressants quit working.

And then the muscle relaxers and benzos quit working.

Yes, yes, yes, you name it, I’ve tried it: from chamomile and melatonin to the heavy stuff (including GHB). I’ve done Cognitive Behavioral Therapy. I’ve meditated. I’ve had the sleep tests. I have a sleep doctor.

But while they have the best of intentions for me, it seems I am now out of options.

I hobbled along for a while by alternating the meds every few nights to avoid tolerance. But my hobble became a crawl, which has now become an all-out faceplant.

Y’all I’m stuck.

And every aspect of my rare chronic illness intensifies when I cannot get any sleep. Add that to the knowledge that sleep is essential in combatting ongoing and ever-increasing illness.

I’m at my wits’ end.

I feel like giving up.

Where once I was a warrior, I now feel like a soldier slain.

Because what do you do when the meds fail you and you’re out of options?

Pray It Away

Since being stricken with Fluoroquinolone Associated Disability (FQAD) in 2015, I’ve had perpetually bruised knees – not from the illness, but from prostrating myself to my Higher Power, begging for a miracle.

Two years of disability – that’s 730 days – 730 days of begging, pleading, showing gratitude, asking for Divine answers, waiting for instructions from The Most High. Sometimes penitent, sometimes shouting, sometimes just sobbing, “Please, please, please…”

But apparently that’s just not enough for some people.

Indeed, if I am told by one more evangelical that I continue to be sick because I’m “just not praying hard enough,” I’m gonna be sick…er.

I know I am not alone in this. Almost every person I know with chronic illness has experienced it. “Just pray harder. God will heal you. You have to claim it.”

It’s insulting.

It’s hurtful.

And it’s wrong.

I get it. For those whose faith dictates that God “made the lame to walk and the blind to see,” nothing is impossible. Miracles occur everyday.

And you know what? Maybe they do. But that doesn’t mean that God has a miracle on the shelf for me, and that I need only ask Him (or Her) to take it down for all of this to go away. Sure, there’s no harm in asking. I ask at least every other day (if not every other minute).

But this whole “ask and ye shall receive” mentality from strangers, friends, or even family is toxic. Why?

1. It’s victim blaming. Instead of placing the “blame” for our illnesses (which is outside of our control. No one would choose to be sick if they didn’t have to be), it places the blame squarely on our shoulders. Don’t wanna be sick anymore? Just pray. As if miraculous healings can just be ordered via Holy Amazon.

2. It’s a misreading of every holy scripture of which I am aware. Just because God can do miracles, doesn’t mean everyone gets one. “You get a miracle! And YOU get a miracle! Everyone gets a miracle!” He’s not Oprah, for Heaven’s sake.

3. It’s nonsensical. We live in a world replete with suffering. Children get cancer, heart disease claims more than 600,000 US citizens a year, Zika is a thing. You really think all of these people – and their families and friends – didn’t think to pray and ask their respective Higher Powers for help? I guarantee you, they did.

So when the miracles don’t come through – when we remain sick or worse – what does that mean? For some, it means we’re meant to endure trials to become stronger, to learn lessons, to provide inspiration or comfort to the suffering. For others, it means we simply drew the short straw: some people live to be a healthy 100; some don’t. Tough break for us. But for others, especially those of the evangelical sort, I always get the same response: you must not be praying hard enough.

My illness is therefore linked to my faith, and I must be a spiritual slacker.

Nope, nope, nope. I refuse to bear this blame any longer.

Just because there are people on this planet that cannot conceive of a world full of senseless injustice doesn’t mean I or any other chronic illness warrior is to blame for the hardships we suffer. I’ll be damned (pun intended) if I continue to shoulder the blame of that accusatory belief system.

Does God continue to grant miracles? I’m sure. Will I continue to hope/pray for one? You bet. Can you add me to the prayer list at your church/temple/mosque/house of worship? Yes please.

But if you see me next week, and I’m still sick, please don’t pester me about how my continued suffering is a result of some personal, spiritual failing. It isn’t.

Instead, remember: “there but for the grace of God go I.”

And give thanks for your health. Because some of us would do anything – including pray every single day – to have ours back.

You're Dismissed

Medical errors are the third leading cause of death in the United States, but patients who bring medical malpractice suits to trial lose nine out of 10 cases.

These startling stats, which are explored in HBO's new documentary about malpractice in Aurora West Allis Medical Center in Wisconsin, are a documented but seldom-discussed danger of chronic and rare illness.

For some, like myself, medical malpractice is actually the cause of chronic conditions. For others, frequent trips to the hospital and comorbid conditions requiring the care of multiple specialists increase the chances that one day one of those specialists is going to make a mistake. And when that day comes, we can only hope the repercussions will be minimal.

Since becoming disabled by fluoroquinolone antibiotics in 2015, I've become my own health advocate - researching methods and medications before making decisions, because I know first-hand what blindly trusting a doctor can do. I make sure I go to the reputable sources - Mayo, Cleveland Clinic, Johns Hopkins. I approach each doctor respectfully with my findings and questions. But, like many with rare illnesses, I (and the research I lug to each doctor's appointment) am ignored, dismissed, or ridiculed by the very people who are supposed to help.

This happened to me again this week, when I went to see a neurologist, studies and newspaper articles in hand, and the neurologist openly scoffed. She refused to even look at the studies, offered me pain meds, and, when I declined, she left the room and did not return.

Knowing that medical malpractice and medical mistakes result in patient death and disability so frequently, it's surprising that so many of us with rare diseases are treated this way by the medical establishment. Why the pushback? Is it an issue of pride? Because I already know each doctor I see spent years getting that expensive medical degree. But I also know that doctors are people, and people make mistakes. I don't want any more mistakes made with my care. Are two heads not better than one?

Prior to becoming a member of the chronic illness community, I was an investigative journalist. Many's the day I've mentally flogged myself for not using those research skills to investigate the meds I was being given in 2015, but hindsight is 20/20, and all I can do now is to attempt not to make those same mistakes going forward.

So I research. Not to diagnose (though I do know many in the chronic illness community, myself included, who would not have secured a diagnosis had they not done research themselves), but to explore new avenues of treatment. In the case of the neurologist this week, I brought her news articles about a cream researchers are exploring to help those with peripheral neuropathy. I wanted to know if this might be an avenue of treatment for me. Without reading the articles, she gave me a cursory, "I've never even heard of it" and sent me packing.

I spent the remainder of my day crying, my bank account lighter a co-pay and my emotional and physical reserves depleted from my efforts.

It shouldn't be this way. Patients shouldn't be bullied or discarded for attempting to participate in their own care, especially when physician errors count for so many deaths among our population. No one is saying physicians should bow down to Dr. Google, but studies including “Clinical Research to Clinical Practice-Lost in Translation,” conducted by The New England Journal of Medicine, have found that the average physician is 17 years behind on the current medical literature.

Fellow warriors, we walk a lonely road. No one outside of ourselves can truly understand our challenges, but this doesn't mean we should be alone in our pursuit of treatment options or wellness. For those of you struggling to find a supportive medical team that actually listens and considers what you have to say, I offer my condolences. It's a struggle I share.

But please don't let the naysayers and the gaslighters get you down just because they wear the white coats. Continue to seek out those physicians who want to be allies, advocates, and partners in the process. They do exist, and they are worth their weight in gold.

Tuesday, December 11, 2018


There are 756 names in my contacts.

And I can't contact any of them.

Monday, December 3, 2018

Aiming Right At You

Oh my Depraved King

fiddle while it's blazing

Cackle as it burns

watch 'em run; it's amazing

I bow to your bow

King you got me aflame

MCs prayin’ for snow

They can't handle your reign.

But I'm screamin' your name


But that's just an analogy.

I've never had a reaction to you.