Thoughts are Bad, M’kay?

So, that last entry about my faulty thumbs? There’s a little more to that story.

I mentioned that I had begun writing about my thumb woes months ago but couldn’t manage to finish the post. But it was constantly on my mind. Every day I thought, “My thumbs hurt. I need to finish that blog post.” Every single day. Then, about a month ago on my way home from work, I added this thought: “I need to get my mind off this recurring sinus issue I’m having, because it’s stressing me out.”

Approximately 10 minutes later I exited my car and slammed my right thumb in my car door. Just slammed it right the fuck in the door. Then it stayed there as I scrambled to find my keys and unlock the door in order to free it. Then I almost passed out. Then I unloaded my groceries and drove myself to urgent care.

Long story short? My thumb is broken now. Hairline fracture, but still. A month later and I still can’t use it much, and need to keep it dry because of the disgusting wound right under my nail, which is bruised and will probably fall off eventually.

Now I REALLY can’t do collages now. Or write or draw. Isn’t that some shit?

You know what else? I’ll take you through some of the thoughts such an injury creates in a person with my fucked up health history:

“Will the doctor try to give me Cipro?”
“Will I be forced to educate a disbelieving and dismissive doctor about FQ adverse reactions?”
“I can’t mention MCS. I’ll have to downplay that one.”
“I’m sick as fuck of downplaying my health issues because modern medicine has not caught up to the reality of environmental illness.”
“OMG, I might have to downplay it for the rest of my life…which could potentially mean decades.”
“This is bullshit.”
“I feel depressed and alone.”

I did downplay my health issues at urgent care, refusing a tetanus shot because of my MCS, without outright saying I had MCS. Instead, I told the doctor that I have peripheral neuropathy from my adverse reaction to Cipro, which worsened the last time I received a shot (lidocaine). Therefore, I did not want a tetanus shot. In reality, the preservatives and/or immune system activation involved in such a shot has the potential to cause a huge backslide in my health, not just with increased peripheral neuropathy, but with increased chemical sensitivities. I cannot deal with that level of illness again. I haven’t even been able to write much about it, because of my residual PTSD.

True to form, the doctor scoffed, looked at me incredulously, and said, “You don’t want to get lockjaw, do you?” I said no, but I don’t want my peripheral neuropathy to flare, either. I’m sure he thought I was insane. From his perspective, I’m sure I looked insane. No hard feelings, doctor, in spite of you subsequently rushing me out of the office for “refusing treatment”, and in spite of your lack of awareness that FQs can cause permanent peripheral neuropathy. You know what else? I was refusing a tetanus shot, but I actually did want his other treatment recommendations. But because I felt rushed and mildly shamed, I didn’t communicate any of this. I just cradled my thumb and let a nurse show me the door.

I spent the next few days paranoid about getting tetanus. I began using homeopathic remedies, but since that did not assuage my fears, I decided to visit my natural-leaning MD to see if they had preservative-free tetanus shots. Sure enough, they did. Well, “as preservative-free as possible”, as he put it. Good enough for me. I got the shot and went back to work.

Then I spent the following week paranoid I was reacting to the shot because I was fatigued and my arm developed a large, red, warm, itchy spot. (That’s the hard part of surviving MCS – not knowing whether a side effect is normal, or indicative of an adverse reaction which will result in worsening health.) Symptoms gradually resolved, though. No worsening of chemical sensitivities have been noted so far. Now I’m paranoid about my thumb developing an infection, but trying to refrain from running to the doctor again.

The moral of this story, people, is a few things: A little bit “be careful what you wish for”, yes. Because I wished for a distraction from my sinuses and ended up with a broken thumb. But also? Watch your thoughts. Every day with the “My thumbs hurt.” Every damn day. And look: I attracted even more thumb pain into my life!  (I’m kind of kidding, though a tiny part of me wonders if there is any law of attraction truth at work here. Yes, I am one of those people. Feel free to internally mock me, or stop reading this blog.)

I could use this opportunity to advocate positive thinking, but I’m feeling too cynical right now. Instead, I wish I could stop thinking altogether. Forget any kind of thinking, both positive and negative, because thoughts are bad. Thoughts are are terrible foes that make things happen. They break your thumbs, make you feel things, and keep you awake in the night.

One final realization: People with MCS (and FQ Toxicity) naturally develop a degree of paranoia because the illness often involves intense physical reactions to relatively benign substances. As such, any given chemical, or food, or prescription drug has the potential to cause misery and a worsening of overall health, requiring extreme diligence on the part of the sufferer in order to protect his or her health. However, mainstream medicine views this diligence as paranoia, and therefore a cause rather than an effect of the illness. They do not recognize the illness’s physiological roots, or that the resulting paranoia is a necessary aspect of survival – especially in a world where disbelief in the illness runs rampant. Mainstream medicine’s misconception of MCS actually forces sufferers to exercise greater caution in their healthcare options due to lack of external support and acknowledgement, making them appear all the more paranoid.

What a vicious circle, the irony of which has been duly noted.

Now, I would like to stop thinking about this vicious circle and carry on with my day. But please, universe, don’t break any more of my fingers or thumbs. I’ll find my own distractions from these unpleasant thoughts, thank you very much. Also? I enjoy my ability to think, so please don’t take my thoughts away just because I complained about them. Okay? Okay.

My Cipro Story

This is the condensed story of my adverse reaction to Cipro, which was printed in a booklet containing victims’ stories to take to Washington DC for this year’s Fluoroquinolone rally. Because there was a 1000 word limit, I omitted several key points which I will probably not bother to expand upon now. I would have included more about PTSD, time lost with my son, MCS, and the Twilight Zone feeling that permeates my existence now. How I have to sit on the sidelines of life watching people take Fluoroquinolones left and right, and then develop mysterious health ailments which doctors can’t diagnose, or never link to the drugs. It used to fill me with rage, or make me cry, but now I feel like I’m viewing it all objectively, like life is a movie I’m watching and have no control over. I guess it’s a self-preservation mechanism. It’s simply not good for me to get all worked up over this anymore.

Anyway, my story:

About five years ago my life was forever altered by a simple round of antibiotics taken for a suspected commonplace infection. September 23, 2008, a date forever branded into my memory, was the mark of my life’s distinct “before” and “after”.

September 23, 2008 is not the day I began taking my prescription for Cipro; Rather, it’s the day I took my last pill. The week prior, I had visited my doctor for a suspected UTI. Like the date, her words also burned into my memory. “I’m going to prescribe you Cipro.” Sounds so innocuous – not at all something that would or should be remembered. After all, why would anyone suspect a round of antibiotics could ruin their life? But like that moment in a horror movie when the viewer shouts, “No! Don’t open the door!”, knowing the terrible fate which awaits the character on the other side, I found myself replaying that moment with my doctor over and over, as though I could go back in time and refuse the medication. In my memory I became the objective viewer of my own horror movie, watching the “before” version of myself right before opening that door. Because I knew that no matter what, from that point forward my life would never be the same.

While taking the medication I noticed few side effects. In hindsight, I felt twinges of symptoms that would later worsen into the unrelenting hell of my adverse reaction, like fuzzy thinking, slight neuropathy, and headache, but nothing severe enough to warrant stopping the medication or even researching side effects. That all changed on September 23, 2008. While my worst symptoms didn’t appear immediately, the date is symbolic because I remember sitting on my bed nursing the worst headache of my life, final pill in hand, wondering whether I should take it. Like somewhere deep inside I knew that swallowing the pill would lead me one step closer to opening the door in the horror movie. But like a good patient, I took it, because not finishing a course of antibiotics could have terrible consequences. (So could finishing it, I would soon learn.)

The next night I was talking on the phone when suddenly thinking and speaking became difficult. The conversation was straightforward, yet I was having an inordinate amount of trouble keeping up mentally. The words I managed to utter stumbled out slowly and awkwardly. Though disconcerting, I blamed it on sleep deprivation, thinking I’d feel better in the morning. I was wrong. My ability to think clearly would vanish almost entirely for the next few years, only to return sporadically until settling on roughly 80% of my former functioning. At that point, I had unknowingly opened the door in the horror movie and crossed the threshold.

The next day brought a wide variety of strange and terrifying symptoms along with the confusion: burning, stabbing pains all throughout my body, numbness and tingling in my extremities and even my face, headache, joint pain, weakness, poor motor control, extreme anxiety, and an overall sensation of vibrating, like being plugged into an electrical outlet. It was as though a bomb had exploded in my body. In spite of my mental sluggishness, I remembered that hints of these symptoms had begun over the previous weekend and decided to Google “Cipro side effects”. Horrified, I learned all about Fluoroquinolone Toxicity and its victims, including the possibility of permanent injury to one’s tendons, and peripheral and central nervous systems.

I immediately called my doctor’s office and made a follow-up appointment. My online reading revealed a rampant denial from within the medical community. However, I still naively thought that once presented with obvious facts, my doctor would not only believe me, but she would somehow help me heal. I couldn’t have been more wrong. In spite of my obvious, abrupt onset of symptoms, along with the Cipro insert stating the possibility of permanent neuropathy, as well as a letter I had found online from a doctor explaining Fluoroquinolone Toxicity, my doctor did not believe I was experiencing an adverse reaction to Cipro. I was astounded.

In the months and years that followed, my health deteriorated further until I was barely functioning, yet forcing myself to work day after day while enduring sickness nearly every single moment. I was a single mom forced to choose between working through my hellish nightmare of symptoms and losing custody of my child. Meanwhile, I kept returning to doctors and seeking help, practically begging them to acknowledge my adverse drug reaction. Almost no one would. The only validation came from a neurologist who researched Cipro but couldn’t provide treatment, and an integrative physician whose nutritional treatments were unaffordable, and not guaranteed to help. The others merely offered Prozac, still believing my symptoms were psychosomatic.

Words cannot convey the hell I endured physically and mentally before finally, very slowly seeing improvements during my third year, no thanks to any doctor. I researched, talked to other sufferers, and guided myself through dietary and lifestyle changes which helped bring me to an acceptable level of health. Now in my fifth year, I’m grateful every day I am no longer in the depths of suffering, but my body and my life will never be the same. Though mild in comparison, I still have neuropathy, chemical and food sensitivities, insomnia, and pain, along with medical-induced PTSD. I lost years of my life, and precious time with my young son which I will never get back. It’s my sincere hope that my suffering not be in vain, that my story will help provide awareness of Fluoroquinolone Toxicity, expose the drug companies’ minimization of this issue, and prevent the suffering of untold masses. We must protect unsuspecting people by informing them of the dangers of Fluoroquinolone drugs, so that their lives will never become their own personal versions of a horror movie: tragic and preventable, with a distinct “before” and “after”.