Saturday, July 28, 2018

When the meds stop working

Modern medicine offers miracles, but for many - like myself - those miracles come at a price.

Every new treatment offers the hope of relief, but each comes with a list of potential complications that can have you asking if the "cure" might be worse than the disease.

Especially when those drugs could cause life-long disabilites.

Or death.

It's a terrifying gamble, and, even if you keep your life and avoid life-long complications, medicine remains a potential minefield.

Since the onset of my rare, chronic illness in 2015, I've seen all of the specialists and been given all of the drugs. But none of them have worked long-term. And most have caused a slew of other problems.

What alleviates one symptom will cause or exacerbate another. Pill X helps the nausea but causes constipation; Pill Y helps the pain but brings on palpitations... And after a few months, neither pill is providing the benefits it once did.

I know I am not alone.

For every warrior I know with a successful medication regimen, there's at least one that's tried everything but had no luck. For those folks - folks like me - everything is a trade off. Do I suffer with the nausea today, or do I take Pill X to tackle it, knowing that all the Metamucil in the world won't save me from the fallout?

There's no such thing as simple relief.

Everything is a trade-off.

And then, as it inevitably does, the day will come when I take Pill X for the nausea, and it no longer helps. Heart in my shoes, I'll return to the doctor to tell him/her that, yet again, my body - which cannot seem to figure out how to get healthy but always finds a work-around for medication efficacy - has ceased responding.

"What are my other options?," I ask.

Lately I've exhausted the list.

In the three years I've been chronically ill, I've undergone every recommended treatment I could afford. This includes rolling the dice on a slew of medications, hoping for the best, fearing the worst, and usually experiencing something in between.

But what I haven't experienced yet is relief.

I'll keep trying. I haven't given up hope that relief is out there - that the cure or at least a mitigator is just around the bend.

If and when it arrives, I'll welcome it gladly.

But I won't be surprised if it causes constipation and palpitations.

Thursday, July 26, 2018

3 years

July 28, 2018 marks the 3-year anniversary of the day I was prescribed Cipro as a "just in case" for a stomach bug.

I had a reaction after the first pill - and I spent at least 2.5 of the past 3 years berating myself for continuing the Cipro and the medications that followed that left me disabled.

I have PTSD.

Year 1 was spent on the FQAD boards, listening to the healing stories of others, counting the days/weeks/months, charting any perceived progress, noting every symptom, seeing every specialist, praying for miracles.

Year two was spent in increased horror and pain. Not only was I not getting better, but new symptoms continued to come on. I was, undeniably, getting worse.

I left the boards. I could no longer cope with the stories of healing. I could no longer stomach the reassurances: "I was really bad for a year, but then I got better! Just wait a year!" and then "It took me about 18 months. Juts hold on until 18 months!" and then "Two years is when many of the worst cases start to improve."

At 28 months, my dysautonomia - Cipro damages your nervous system, including your autonomic nervous system - I suddenly became unable to breathe. I always felt I was gasping for air. Blood work showed I had too much H20 and not enough CO2. I was told I was having panic attacks. But it wasn't panic. My autonomic nervous system just forgot how to breathe for about 2.5 months.

At the end of May I got a short reprieve - for about two weeks I was actually feeling better. My pain had diminished. I could breathe. My hair stopped falling out. I dared to be hopeful. Was this the promised healing others spoke about?

Around June 1 it all came crashing down. My peripheral neuropathy, which had been limited to burning pains in my hands and feet while at rest, erupted overnight to include the entirety of my body. Everything. Arms, legs, face, trunk. What's left of my hair would have pins & needles/burning if it could, I swear it.

I hoped it was a flair. I hoped it'd die down in a few days.

It didn't.

Within weeks I could no longer feel hot/cold in my hands and feet.

I can no longer feel my big toes at all.

It's difficult to walk when you can't feel the ground properly.

Long walks have always been my way of dealing with things...

It's been 8 weeks now - 8 weeks of continued damage to my nerves, damage which may be irreparable.

There is no cure for neuropathy. Once the nerves are dead, that's it.

Doctors label my neuropathy as idiopathic.

They refuse to believe it was the Cipro, even though the warnings about it are right there in the RX packet.

With medication-induced neuropathy, there are not even lifestyle changes (like getting one's diabetes under control) that can stop the insidious spread.

I am scared.

But that's really nothing new.

I've been scared - utterly terrified - for the past 3 years as, one-by-one, and sometimes seven-by-seven, the new symptoms came on. As my various body systems shut down or malfunctioned.

They'll give me meds for the symptoms, but my body doesn't respond correctly to meds anymore...

Even Tylenol affects me now...

If you'd told me 3 years ago I'd be sick for 3 straight years - and, as is obvious now, longer - I think I might've ended it all.

But you don't know what you can endure until you endure it.

It's only hope that's kept me going thusfar.

Hope and my wonderful husband.

Don't get me wrong - life is beautiful. I want to live it.

And that's the saddest part.

My life now mainly consists of sitting on the couch, battling back a dozen or so symptoms at a time, trying to adapt to a series of ever-undulating terrors.

These two months it's been the progressing neuropathy and its implications for my long-term disability. Six months from now, who knows? Maybe I will cease to be able to breathe again...or have the body-wide tendonopathy again...or lose my sense of taste and smell again.

Who knows.

I don't know how many read this.

I don't know if it'll make any difference.

But to me, it makes all the difference in the world.

Every life is precious.

My life is precious

and worth saving.

I wish I could convince medical researchers of this.

For those of us permanently disabled by FQs - people like Neal Travis, Michael Kafferly, Cheri Haddon, the guy from - our lives are worth saving.

I've spent 3 years hoping someone would step forward, willing to work to save our lives.

I continue to hope.

It's only hope that's kept me going thusfar.

Monday, July 2, 2018

The Last Unicorn

Few of life's mysteries can be contemplated without ending up in some sort of logic loop that both ends and leads with "The Last Unicorn."

If you haven't seen the film, it's little wonder you live each day questioning "What does it all mean?"

The rest of us - those learned folks who've seen the cartoon wherein Mia Farrow falls for prince Jeff Bridges and becomes the only unicorn in existence to understand the concept of regret, soundtrack by America - don't know the answer to "What does it all mean?" either, but at least we have a solid point of reference.

So today, as with most days, I found myself once again contemplating my failing health and the inadequacies of the modern health system, when - obviously not for the first time - a scene from "The Last Unicorn" played in my head and offered some insight.

In the film, most humans cannot see unicorns. Instead, where a unicorn stands, they only see a white mare.

Mommy Fortuna, a witch voiced by Angela Lansbury, can see unicorns, but, knowing that most folks can't, she sagely casts a spell giving the unicorn a faux horn for the plebs.

When Farrow questions the choice, Lansbury explains, "Do you think those fools knew you, without any help from me? Ha ha ha! No! I had to give you a horn they could see!"

While the implications of this - that most human beings cannot see the magic that surrounds them - are plain, to me, today, this scene speaks to my experiences with the healthcare system.

My symptoms are real, and frightening, and debilitating.

But often they are not measurable by standard medical testing.

Those that are routinely come back indicating that something is wrong, but those tests are repeatedly passed off by doctors as blips, anxiety reactions, idiopathic, or indicative of something that "should pass any day now."

But the abnormal results - the daily fevers, the variable blood pressure and heart rate, the elevated immunoglobulans that indicate my body is constantly fighting off an infection, the spreading small fibre neuropathy - they don't pass. Theyr'e constant.

And because no one can explain it, I'm dismissed or shuffled off onto another specialist.

Few offer help.

None offer hope.

Thus this scene in "The Last Unicorn."

Like Farrow, when doctors look at me and my illness, they see a white mare.

The signs are all there - signs that there's something different about this mare - signs that in the puzzle of life as we know it, this piece doesn't fit - but those signs are ignored.

"White mare, white mare, white mare," is all the doctors say and see.

And until a medical magician - a Mommy Fortuna with a parlor trick - comes upon me and slaps upon me a horn that other doctors can see, this white mare diagnosis will continue.

Like those in the decades before me who suffered invisible illnesses like Fibromyalgia, I will continue to be ignored until the science catches up with the symptoms.

I just hope that I will live to see that day.

And, if I do live to see it, that it will not be too late to save me from this daily nightmare.