*I suppose I should kick off with a disclaimer that this is my personal story about my own experience and subsequent beliefs and that I am not a qualified medical professional.I met Sally for the first time on a yahoo message board in 2005. We both suffered adverse reactions to a fluoroquinolone antibiotic. We were "floxed". This group has adopted the self-assigned label "floxie." Sally and I got to know each other on facebook. With me in Idaho and her in Connecticut, this was our first face to face meeting. Sally is a professional clown. We had a delightful time connecting in Mystic, Connecticut that will be documented in a happier blog soon.
|Sally suffered extensive nerve damage due to Avelox.
I suffered tears in both Achilles tendons &other tendon & joint damage.
This won’t be like my other blogs. There are three specific audiences here: people who will ever take prescription drugs, people who’ve had their lives destroyed or repositioned due to an adverse quinolone reaction and myself. I need to hear myself here.
This contains a looooong recap of accounts, anger, sadness and loss. You can scroll to header titles that may be of greater interest to you. I hope as I type, a rebirth and gratitude find their way out my fingertips. Here are the bull-et points that I’ll be as arrogant enough to say, YOU NEED:
- I should have trusted my body when I felt something wasn’t right.
- I should have paid attention to the drug I was prescribed and researched its potential side effects and contraindications.
- From now on, when I feel a doctor, physician assistant, nurse practitioner or pharmacist isn’t taking me seriously, I challenge them. It’s MY body. I am courteous and direct, but I am also a fierce protector of my body now.
- Fluroquinolone antibiotics (particularly Cipro, Levaquin and Avelox) have horrible side effects that I believe (after consults with a few law firms and other drug victims) were not fully and properly disclosed and investigated by the manufacturers before and since these drugs went on the market.
- I am an example of someone whose worst life experience led to unimaginable, “WONDER"ful things. (There are a lot of rainbows after this heifer’s hurricane.)
I am a former college volleyball and rugby player. I know fitness. I know my muscles. I know my tendons and I know pain—both the good and the bad. In April of 2005, a rusty nail in an old wooden garden border punctured my leather work glove and the meaty part of my hand near the thumb. I went to the ER because my last tetanus shot had been in the spring of 1997.
I was prescribed Levaquin at 500mg 2 times a day for 7 days to prevent infection. Levaquin is in the class of drugs called fluoroquinolones. Sometimes they are called quinolones or quins. Victims of their toxicity call them poison. Popular other drugs in this class include Cipro and Avelox and Avocid and Baytril for dogs and cats.
The physician assistant at the ER over-prescribed here. Period. I didn’t need the drug. I heard “anit-biotic” and recalled countless strep throats and the penicillin and amoxicillin and figured, “Meh—OK.” I was so not OK after Levaquin.
I remember the week like yesterday. I had started a new job with my same company that January where I would be working with our software vendors to determine and incorporate design methodologies among our engineering groups. This week entailed my first face-to-face sit-down with vendor engineers. Two weeks prior, I had attended my first technical conference in San Jose. I can remember the routes I jogged outside the hotel. It was sea level!! I ran and ran and ran. I didn’t know what an important data point that would be. I was fine. My body was good.
I started the drug on a Sunday. On Tuesday, I felt I was coming down with a cold. I had body aches reminiscent of rugby days. A soreness everywhere. On Wednesday after a lunch at the local Greek restaurant with our vendor engineers, I had to go home and sleep. One of my biggest weeks in my career and I couldn’t make myself stay at work.I thought it was a cold. I was hopeful that since I was taking an antibiotic already, that it would be short-lived. I remember watching Criminal Minds that night swaddled in my down comforter. I was physically shivering and felt brittle. My joints were more than achey. They felt…weak, too. The image that eventually came to my mind was Pinocchio—I felt like my muscles were barely being held together.
On Thursday, I had a cryosurgery appointment with my gynecologist. My pap smear came back with atypical cells in March prior, and I’d been put on hormone therapy. This appointment entailed a freezing of my cervix to kill any abnormal cells. (I can’t believe I just blogged with the phrases “my pap smear” and “my cervix.” I HATE Levaquin for this discomfort and over disclosure right now.)On Friday, I was still miserable, but had settled into the discomfort, I suppose. Over my lunch hour was my first gig as the mascot for our local Greenway. I donned a big green frog suit and transformed to Greta the Greenway Frog for the City’s Environmental Fair. I walked, skipped and danced along a block of our main street waving at cars. I always wanted to be a mascot. (Yes…I’ve been a frog and here a cow. The end of the Wonder Calves entry breaks this fetish down a bit.)
Saturday was my last day of taking Levaquin. I had my second stint in the frog suit for a few hours. I had a bit of soreness in the suit, which I figured was normal, because I’d never worn one before. The head was heavy and I had to work my shoulders to wave so exuberantly. And the skipping and dancing…It was so fun and freeing to really dance like no one was watching. They were watching Greta not me, and Greta danced and skipped like I hadn’t ever before. Well, maybe I busted out some of those moves in a rugby game or two, because believe me…I danced on the pitch.
I also mowed my lawn that day. It was April 23. While traversing a slightly hilly portion, I noted my calves were sore. I thought, “Geeze—did I hop around in that silly suit THAT much? Have I really become THAT out of shape this winter?” I figured I needed to stretch more.The Heifer’s Hell
Calf and Achilles tendon soreness persisted. Other body aches remained, but the chills and train wreck sensation went away after I stopped taking the drug. The pain was different than anything I’d ever felt. It made no sense. I recalled my gynecologist telling me about blood clots as a potential side effect of the hormones and to note any pain in my legs.
On May 9 I went to the ER because I could barely walk. The only thing I could think of that was different were the hormones and the recent atypical cells of my pap smear. The antibiotic didn’t even dawn on me because I lumped it in with all the others I’d had over the years, but this ER doc noticed it in my chart from my rusty nail visit. When he looked up Levaquin he noted a “rare” but documented side effect of tendon tears and tendonitis. What? How? Are you kidding me?And thus started the downward spiral.
I was so fortunate to have a doctor and physical therapist who believed that Levaquin was responsible for my pain and injuries. I developed micro-tears in both of my Achilles tendons. All of my joints started to feel like they were crumbling from the inside out. “Brittle” was here to stay. I was given crutches and two walking casts immediately.
I found an article online that documented one physical therapist’s experience working with someone with my condition. When I met my physical therapist, he set me up on a table with heat on both Achilles while he read her article. After 20 minutes, he came back and said, “We aren’t going to do anything today. I need to learn more before we tackle this.” He could not have handled my injury and my fragile spirit any better.
That summer was set to begin with a trip to Hawaii with my former partner and her 11 year old daughter. I blame Levaquin for a lot of that word “former.” It changed me. I became a different person than the one she was going to spend a lifetime with. She also didn’t handle my depression and fears in the ways that I most needed. Levaquin brought out the worst in both of us.The night before our trip, she found me crying and writing in my journal. It was the kind of crying where your body doesn’t seem like your own and its heaves are driven by furious, unyielding waves of hopelessness.
I needed a wheelchair in the airport. You haven’t lived until part of you dies when you see a pity in people’s eyes from a wheelchair. I smile purposefully and genuinely when I see people in wheelchairs now. I smile at them as though they are wearing a cow suit. No pity. None. They don’t need that from me.
Counseling would have been a wise choice here. I’d sought therapy during my mom’s terminal illness. I don’t know why I never did during Levaquin. Well---actually, I do know.A parent’s death is on life’s checklist of experiences; a severe drug reaction which was due (in my opinion) in part to the negligence of the manufacturer, the prescribing agent, and the pharmacist (I was not given the warning—either verbal or written—about tendon side effects), is not. I was…ahem…a victim. "Victim" is a label I never wanted, and like victims of many things, I experienced denial and anger and loss and depression and … blech!
The former college athlete couldn’t run anymore. I couldn’t mountain bike. Walking my dogs later that summer was a slow shuffle after the 9 weeks of sedentary. My partner held their leashes because I was afraid a lunge at a squirre would tear every tendon in my shoulder. Physical activity was a part of my identity and intense exercise was my chief coping mechanism for life’s stresses. My coping mechanism was crippled and broken. And my heart followed for about 3 long, dark years.The Hiefer’s Hope
A lot of little steps got here. There wasn’t a giant leap. I run now—well, waddle. I can pound out a good 30 minutes on the treadmill or 45 minutes … say at sea level in Connecticut while contemplating it all. I can bike like a fiend, both road and mountain. I can lift weights like any other gal whose relationship with the gym goes through similar push me/pull me cycles during her how-the-hell-did-I-turn-40 crisis.
My turn-around came in my fourth summer after Levaquin. After a long project at work, I treated myself to a new bike with a custom paint-job. I got to name it.
|Me and "Achilles' Triumph" with a poetic rainbow.
I'd been in the wheelchair that week 8 years before.
My body still has aches and pains, but I’ve come to embrace it as what comes with the passage of time rather than the fault of Levquin.
At my 20 year class reunion a few years ago, I gave a little talk at the main dinner. I had an enviable high school experience—successful athlete, honor roll, 1st chair trombone and student body president. I told my classmates that I have felt for years the need to apologize for having a great high school experience. How messed up is that?
I feel similarly as I talk to fellow floxies. I am one of the lucky ones. Survivor’s guilt, perhaps? I don’t want to say that I’m healed because I know that some floxies won’t ever be. I told Sally as we walked that I do feel healed, but I also don’t want to say that because it lets Johnson & Johnson off the hook. I want to hold onto my anger because I couldn't hold onto the years lost, but it serves no one. I am lucky. I hope my story breeds hope because luck IS out there.Through luck and focus I dug out of it. My mind and my body worked together for a long time, and I can let Levaquin go now.
The Heifer’s HeroI’m in New England for work, but I went to Connecticut because of Levaquin. To meet Sally. (Yes—this could have been titled “When Billie met Sally.”) I went to a laundromat at Mistic Village last Saturday in my cow suit—because it was a Cow Suit Saturday after all. I wandered through the village shops while my not-as-fun outfits spun.
I bought a Red Sox hat and stopped in their little visitor center to grab brochures to help me decide what to do for the rest of the day. Casinos? Connecticut has casinos? This cow looooooves craps!I went back to the laundromat to check out the brochures. After reading all about the fancy-schmance Mohegan Sun Casino, I decided to check Twitter on my phone. I rarely check Twitter.
Lynda Carter (I should not have to add—the actress who played Wonder Woman in the 1970’s show) tweeted:
What a great night in NYC! Thanks to everyone who came out for the show last night. We had a blast. On to Mohegan Sun!What? How? Are you kidding me?
Long story short…Levaquin led to Lynda Carter. I stood 10 feet from my childhood hero. No. Words.
|Lynda's picture is blurry but everything surrounding
this night sure isn't.
I will stop short of saying I am grateful for Levaquin, but holy cow! The opportunities and experiences and reflection and clarity that came this weekend…. I am grateful for all of that.
In letting levaquin go, I imagined hurling it and all of the memories & pain into the Connecticut sea with a dramatic parting of ways. But it had already slipped through my hand like water. It wasn't there.There’s now a colorful tattoo at the base of my throwing hand that doesn’t need to throw anything for a while. Nope, this hand is for holding , and this life-changing weekend highlighted exactly the things this heifer should hold onto fiercely.