An unwilling expert

Hello friends, my intention was to follow up every month regarding my progress recovering from getting floxed, but I missed the July update due to a variety of challenges and setbacks. If you have been following my recent posts, you have read about my devastating reaction to the generic equivalent of the fluoroquinolone antibiotic Levaquin, levofloxacin. Other common antibiotics in this class include:

Cipro (ciprofloxacin)
Avelox (moxifloxacin)
Tequin (gatifloxacin)

Today marks 82 days since my reaction to levofloxacin. Twelve weeks, and I have had only minimal improvement. Some days are better than others, and some are so bad I wish I could crawl into a hole in a cave on the moon to escape.

During this time, I have become somewhat of an unwilling expert on the subject of fluoroquinolone antibiotics and their effects. It's not something I ever could have planned for, but it's something I am trying to embrace (albeit bitterly, on occasion) in an effort to feel more in control of my health and my choices.

In the beginning of this floxie journey, I mentioned that I would be documenting successes as well as setbacks. As many victims of fluoroquinolone toxicity syndrome can attest, there is no one-size-fits-all cure to recovering from floxing. It is largely a "try, try, and try again" type of approach for most of us. However, here are a few things that have helped to alleviate some of the symptoms for me:

Magnesium

I can't stress this enough. Magnesium is your friend. Even before getting floxed, I am sure I was low in magnesium, as many people are. Magnesium deficiency can cause a variety of symptoms, including headache, fatigue, nausea, and loss of appetite. You can read more about the effects of magnesium deficiency here and here.

I have added magnesium through an oral supplement combined with calcium for better absorption, and a topical magnesium oil that I rub on sore muscles, or on the bottom of my feet when I go to bed at night. I find that if I miss even one day, my pain is greatly increased the following day. It certainly isn't a magic cure, but it does make a significant difference.

Tart cherry juice

There has been quite an increase in information recently about the health benefits of tart cherry juice, especially in regards to pain relief for condition such as gout, joint pain, urinary tract infection, and insomnia. From Prevention magazine to the Huffington Post, media all over the world has picked up on the many beneficial properties of tart cherries.

There are a couple down sides to tart cherry juice that I have found. First, it's terribly expensive, at least for me. It's hard to swallow (pardon the pun) a $16 price tag for a bottle of juice. Second, personally, the taste of the juice is quite strong for me. I mixed it with cranberry juice and it's actually pretty delicious that way. I have noticed when I make a point to drink a small glass every day, my pain level is noticeably reduced.

Tai Chi

Exercise, of any kind, is typically not advised during the acute phase of fluoroquinolone toxicity. Because of the damage caused to the tendons, ligaments, muscles, and fascia, adding any strain, however slight can potentially result in devastating injuries, including ruptured tendons (commonly in the Achilles tendon, and rotator cuff). For the last 12 weeks I have been essentially on bed rest by my doctor: no lifting, no bending, no squatting, no twisting, no stairs, no walking for long distances, no swimming, and no exercising.

Don't get me wrong, I certainly wasn't the most athletic person even before getting floxed, but being completely restricted from all movement, even normal activities such as doing laundry, or washing dishes, has been extremely difficult. Not only do  my joints and muscles hurt, but I am weak. I have trouble moving a jug of milk from the refrigerator to the kitchen counter. So, finding something that allows me to move without straining anything is a challenge, to say the least. I turned to tai chi, which I do by following along at home via YouTube, and it has been a good start to heading off some of the atrophy and loss of flexibility that comes from being restricted from normal activity for so long.

I look forward to updating this blog in the future with additional helpful treatments and therapies for recovering from fluoroquinolone toxicity syndrome. This is absolutely one of the most difficult health challenges I have ever faced. There have been dark days, when I felt myself close to a point where I may have given up. But every time I got that low, I looked at the faces of the people around me that are fighting this with me every step of the way, and I know I can't let them down.

It's important to reduce your stress as much as possible, surround yourself with loving, compassionate family and friends, and forgive yourself for your limitations. YOUR body didn't let you down. A toxic medication did. Sending you all love and light and hope, and quick healing!

...and of course, here is the disclaimer:

The information, including but not limited to, text, graphics, images and other material contained on this website are for informational purposes only. The purpose of this website is to promote understanding and knowledge of various health topics. It is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have read on this website.

One Month Post Flox

One month ago my world changed, perhaps permanently.

As you may have seen in my last post, the newest word in my dictionary is "flox." I imagine that you have never heard of the word before now, and if you haven't then you can certainly count yourself a lucky one. Of course, it's not necessarily a word recognized by the medical community, but if you are one of the luckier floxing sufferers you have a doctor or medical professional that is familiar with the devastating side effects drugs such as Cipro, Levaquin, and Avelox cause.

Perhaps the greatest side effect, that you will likely never see on any manufacturer's packaging insert, is the loss of self.

It's not the breath-stealing pain exploding in my joints. It's not the burning ache smoldering in my muscles and tendons. It's not the vertigo that causes the room to whirl like an out of control carnival ride. It's not the stiffness in my spine that makes it impossible to bend, twist, or lean. It's not the emotional upheaval from having your world stolen overnight by a medicine.

The worst thing, for me, is feeling like I've lost myself. I was a wife, a mother, a friend, and a full-time employee. Six pills was all it took to steal that from me. Instead of an active participant in my life, I am a bystander. I am a lonely onlooker, excruciatingly aware of what I had one short month ago, and what I no longer have.

Keep your head up, they say. It will get better, they say, It won't last forever, they say. But they don't live my life. They don't walk in my shoes. They don't have to look their loved ones in the eyes and say, for the thousandth time, "I can't."

This post isn't supposed to be about doom and gloom. And I certainly haven't given up. But this fight is a hard one. It's one of the hardest thing I've been faced with in my entire life. I'm just one month in, and still in what most would call the acute phase. I very likely have many more months ahead of me before I ever get back to normal.

Until then I will continue to fight for a new normal, and ignore the pain, the muscle cramps, the balance problems, and the depression. Until then, I will continue to push for therapies that help relive my symptoms and give me back myself. Until then, I will continue to look my seven year old daughter in the eyes and say, "I can't right now, but mommy won't stop trying."

I've been Floxed

Two weeks ago, I had never heard of the word "flox," or the phrase "getting floxed," or the endearing name "floxie." It's amazing what can change in eleven days. People that have had serious adverse reactions to fluoroquinolone antibiotics such as Cipro (ciprofloxacin), Levaquin (levofloxacin), and Avelox (moxifloxacin) have dubbed themselves "Floxies," and now I am in their club.

A bit of background before we get started. The last several months have held some serious health challenges for me: I had a terrible, severe upper respiratory infection that lasted eight weeks from October to December, I broke my tailbone in January, I had a sinus infection  in February, and I caught strep in March. Somehow, in April, I escaped from the health snowball I'd found myself in.

At the start of May, that changed however. I woke up early in the month with a hacking, productive cough that was eerily similar to the way my bronchitis had begun last winter, and in an effort to avoid getting ill like that again, I went immediately to my doctor. She agreed that it was prudent to treat this aggressively and gave me a prescription for an antibiotic called Levaquin. I had taken the same drug in the winter, after a Z-pack (azythromycin) and Keflex (cephalexin) had both failed to alleviate my symptoms. I believed that I had tolerated Levaquin before, and was eager to complete this course of medicine and stop my bronchitis before it really got started.

Nine days later I found myself in my doctor's office once again, this time in agony. Every joint in my body--and I *do* mean every joint--felt as if it was simultaneously broken and on fire. My neck, shoulders, elbows, wrists, knuckles, hips, knees, ankles, and spine ached and sparked electric fire with even the smallest movement.

I was aware of the black box warning on Levaquin that was added by the FDA in 2008 warning of the risk of tendon rupture, especially of the Achilles tendon, in certain vulnerable patient populations. I have never had a ruptured tendon, and not knowing what that pain would be, I was not confident that I was experiencing that side effect. I DID know, however, that something was terribly wrong.

In many ways, I am quite lucky. My primary care doctor and the nurse practitioners in his office are amazing, capable, compassionate individuals. The APRN that I saw quickly diagnosed a reaction to the medicine and insisted that I stop taking it immediately. She had no better suggestion for me than to rest and drink plenty of water, unfortunately.

Each day since then has been a challenge--physically, emotionally, spiritually, and mentally. I am consumed by pain, which is frightening in its intensity. It migrates from joint to joint, with one day my shoulders feeling the worst, then the next day it's my hips, and then the next it's my ankles. I am exhausted, I am cranky, I am depressed, and I am stressed out. All because of a medication that I took in good faith in an effort not to get worse.

Oh, the irony.

The good news--which I am holding on to with all the zeal of a bulldog--is that I was diagnosed quickly. Google helped me find the thousands and thousands of other people like me, people that were injured while taking a medication prescribed by their trusted medical professionals, and that were now left coping with a series of conditions that are difficult at best, and crippling at worst. Connecting with communities of others that have experienced the same symptoms is both uplifting and demoralizing.

I was literally in tears the first night as I crash-coursed my way through the many, many articles about the dangers of fluoroquinolone antibiotics. There were an overwhelming number of personal accounts detailing how profoundly people had been affected by the medication they had taken. It was difficult, in fact, to find positive stories, stories of survivors and thrivers.

I am still in the "acute" phase, which the general consensus tells me will last approximately a month. My doctor seems to think I will take six to eight weeks before recovering completely. I have read one story after another from other "floxies" that show a more sobering timeline: often six months to two years, if not longer before life gets back to some sort of normal.

I'm not going down without a fight, however. After all the challenges I have faced in my life, THIS is not how I'm going down. This will not be the end of me, if I have to fight tooth and nail to make it happen. So, if you have recently discovered that you, too, are a floxie, don't you dare give up hope. Yes, this sucks. It sucks beyond all possible reasoning, and not many people around you are going to truly understand the magnitude of what you are dealing with.

But don't give up.

There is an abundance of information at your fingertips via the Internet, there are support groups on Facebook and Twitter, and there are websites whose sole message is one of hope and healing. Two of my favorites can be found here and here. Educate yourself. Reach out to others. Surround yourself with loving family and friends that will support you while you heal. And most of all, don't give up hope.

Please check back soon, as I will be following up with my progress, and hopefully will have some more information for you regarding what treatments have worked for me, and what hasn't helped. 

Jan 7th -- or The Day I thought I Would Be Committed

Sometime last year in January, let's say it was the 7th, I woke up and thought to myself, today is the day I'm going to be committed. Because you see, I was convinced that I had in fact lost my mind, and that this must be what crazy felt like. I wasn't ME anymore, and I had no idea who was walking around in my skin.

For months (years, really, if I'm telling the truth), I had slowly been slipping away, replaced by a cranky, mean, tired, forgetful, fat, sick person. Only, I didn't know I was sick. I just thought that this is how crazy sneaks up on  you. Insidious, slow, creeping, until all at once it's there and you had no idea how it happened.

As I lay in bed that morning, I was caught up in the fuzzy almost-memories of the awful nightmare that had woken me up so abruptly. It was hideous, and so very terrible, that I cannot even bring myself to write about it. It was another nightmare in a long series of nights filled with insomnia, broken sleep, and fitful dreams. Flashes of the nightmare played over and over again behind my exhausted eyes, and I felt with a certainty clear down to my bones, that only someone who had lost their mind would ever dream something so barbaric and grotesque.

I was crazy.

I knew it.

I hauled myself out of bed, dragging my feet to the bathroom to take a shower--because who wants to be committed with greasy hair? The tears started under the stream of hot water, and didn't stop. I couldn't stop. A detached, clinical little voice in the corner of my mind pointed out that this was yet another example of how looney I had become.

My husband discovered me standing there in the bathroom, utterly forlorn, and crying quietly. To his everlasting credit, he handled my wet eyes and snotty nose with the same calm, loving way that he usually did. I'll be honest, I was scared. Like, terrified. How could I tell him what had happened, what my twisted brain had created, without him turning away from me in horror and immediately calling the state hospital?

Instead, he listened with patience, and compassion, reassuring me that he knew that something was going on with me, something with my health, and that we just needed to get to the bottom of it. I made an appointment with my doctor later that day, and that led to a journey over the next few months that uncovered long-standing thyroid disease, which was triggered by an auto-immune disease called Hashimoto's thyroiditis.

Since then, I have also been diagnosed with a genetic mutation that interferes with how my body utilizes vitamin D and folic acid, which directly affects the production of uptake of serotonin, dopamine, and norepinephrine (happy hormones). For a very long time, my body had been fighting a losing battle I knew nothing about. I had been internalizing all my symptoms, and believed that it was all in my head.

But it wasn't. It took one ghastly nightmare, and the loving concern of my husband, to push me into seeking the help that I needed. It was the first step onto a long road, one in which I'm still hitting bumps and valleys, but it was a step in the right direction. If you are feeling the same way, you need to seek out the help that you deserve.

On a final note, before some of you are tempted to get all riled up about my callous use of the word "crazy,' please understand that I am in no way disparaging people with legitimate mental illness. It is, however the language of my struggling thoughts, and therefore I believe it is the most relatable way to reach out to other sufferers of invisible illnesses.

The Great Weight Debate

There is an evil creature lurking in my bathroom. With just a glance, it can make my day go from good to awful. It can infiltrate my thoughts and pick apart my self-esteem like a vulture with carrion.

What is it? The Scale.

That's how I think of it in my head: The Scale. As though it is a self-aware gremlin hiding in the cabinet. As if it is intentionally malicious.

It's true that the scale can only show us a number which is really just an expression of our relationship with gravity. But we all know how much power that number can wield. We know how much of our self worth is wrapped up in our weight; we know all too well how that number translates into whether we think of ourselves as "good" or "bad."

I don't know how it started, or where along the way my weight became to central to my value as a person, and  wish I knew how to extricate myself from that kind of thinking. But I don't. I don't know how to stop feeling like a terrible failure as a woman, as a wife, and as a mother for being fat.

What I try to do--and sometimes succeed, and sometimes fail at--is remind myself that I am sick. I have a multifaceted (invisible) illness that, unfortunately, has serious consequences for my overall health, not the least of which is relentless weight gain. My body is caught in a maelstrom of malfunctioning hormones, enzymes, and synapses. It literally cannot do what I want it to do sometimes, which includes losing weight.

Just be patient, my doctor says.

I love you no matter what, my husband says.

Mommy, you're beautiful, my daughter says.

I hate everything about you, my inner critic says.

It's a daily debate. We hear: love yourself the way you are, and then immediately after, lose ten pounds in ten days. We are told beauty is in the eye of the beholder, but that too thin or too fat is not beautiful. I swing wildly between actively loathing my body, detesting the fact that it won't obey my weight loss attempts, and feeling overwhelming love and sympathy for this pile of tissue doing it's best to keep functioning despite it all.

If you are struggling the same way that I am, my only advice is this: try to ease up on the self-hate once in a while. You can only do what you can do, and when your body can't do what you're asking it to do, it isn't because you've failed. This, right now in this very moment, is beyond your control. Your poor, sick, battered body needs all the love and acceptance you can give to it.

One of the best pieces of wisdom that I've run across to help me remember my own advice is that you are not fat, you HAVE fat. In fact, no matter what your particular health challenge might be, let's elevate that to include the loving words of Walter Miller Jr., "You don't have a soul. You are a soul. You have a body."

So, for today, that's what I am holding onto. Just like hair, toes, hands, and skin, I have fat. I am not fat.

Taking Meds Is Important...Like, REALLY Important

Guess what? Taking your medication the right way, at the right time, on the right days, is critically important. I found this out the hard way a couple weeks ago.

I talk a lot about invisible illnesses on this blog (okay, it's really the only thing I talk about) and like many other people, I have a thyroid disease called Hashimoto's thyroiditis. In the most basic terms, my immune system mistakenly attacks my thyroid gland, destroying it over time. In fact, a surprising percentage of invisible illnesses are due to a malfunctioning immune system: Addison's disease, Celiac disease, Chron's disease, Chronic Fatigue Syndrome, Fibromyalgia, Lupus, Multiple Sclerosis, Psoriasis, and Type I Diabetes, to name just a few.

These diseases are often complex, and have symptoms that can affect many areas and systems of the body all at once. Such complexity sometimes requires multiple medications, taken with very specific directions. If you're anything like me, you might feel like all the medicinal hoop-jumping is for nothing; your symptoms aren't better, your prognosis isn't improving, and you have to take out a second mortgage to pay for your medications. It's hard to continue taking medications the way you are supposed to, when it doesn't feel like they are doing anything.

But I am here to share with you WHY it is so important to do exactly that.

In addition to my thyroid disease, I have a genetic defect on my MTHFR gene. You can read more about what this gene does here. Basically, when it doesn't work right, all kinds of things go wrong. Big, scary things, like increased risk of dementia, coronary artery disease, stroke, and cancer. The treatment for my particular defect, A1298C, involves vitamin therapy--LOTS of vitamin therapy. Which I underestimated.

Sigh.

Four weeks ago I ran out of my high-dose folic acid, and neglected to get it refilled. After just a week or so, my depression had increased so dramatically that I was having borderline suicidal thoughts. Every day, I got worse and worse, as though the deep, dark hole I was in was only getting deeper and darker. I had a difficult candid conversation with my husband about how I was feeling, and with his help realized that there might, in fact, be a connection between my missing supplement and how awful I was suddenly feeling, how poorly I was coping with everything.

I made a point to get back on track with all of my medications, and I gotta say, within a week, I was so much better. It was shocking, because I only just got my diagnosis regarding this genetic defect, and had thought to myself, "how important could some folic acid be?" I'd lived my whole life up till this point without taking this prescription, so I didn't realize how it could really impact my health.

Well, obviously enormously important. If I hadn't shared how I was feeling, if I hadn't made the connection between my symptoms and medication, if I hadn't restarted my prescription as quickly as I did, I may have been facing a serious psychological crisis. I could have continued down that terrible, isolated road, and potentially hurt myself. All because of skipping one medication.

The lesson, kids, is that even if you think your meds aren't doing anything at all, you really need to think twice, three times, a hundred times, and then talk to your doctor first before just stopping it. Don't be lazy like me. Don't disregard what is obviously necessary for your health. Don't find excuses to not take care of yourself.

Oh, the irony!

Having an invisible illness like Hashimoto's thyroiditis--hypothyroidism--makes for a very isolated existence. Thyroid disease affects its victims in some pretty profound ways, most of which are not very obvious to everyone else. Unfortunately for those of us living with thyroid disease, particularly hypothyroidism, the symptoms that people can see are physical, such as weight gain (accompanied by the inability to lose weight), and extreme fatigue (often erroneously interpreted as laziness). Another extremely common symptom is "brain fog," or confusion, loss of memory, etc (all of which can trigger assumptions ranging from drunkenness to stroke).

When people, even well-meaning people, offer advice on how to manage our illness, it's difficult to be nice. It's really hard to hear things like "oh you just need to exercise more," or "maybe you should eat better." Because every single second of the day, we feel like we've been run over by a truck, and let me tell you, if there was a way to cure this disease, I would be the FIRST in line!

I recently came across an article that claimed to offer "essential" tips for losing weight with hypothyroidism. As I mentioned, I am ever on the lookout for something--anything--that will work to make me feel better, so naturally I dove right in. I'm torn about linking to the article (you can find the article here), since there is nothing inherently wrong with the advice offered, however the bitterly emotional side of my brain wants to rant and rave about the simplicity of it all. So, in an effort to (1) let other hypothyroid sufferers know they are not alone, and (2) help family and friends have a better idea of our desire, effort, and failure to get better, here are my responses to the advice I got so fired up about.

Tip 1: Avoid eating artificial sweeteners

So, I have epilepsy (woohoo on top of everything else, my brain gets twitchy too!), and artificial sweeteners are a BIG no-no anyway. Plus, they taste weird. Like, really weird. And leave an odd metallic aftertaste in my mouth. Even "natural" sweeteners such as stevia bother me, so it's cane sugar for me baby! But there are those out there who have turned to zero calorie sweeteners, likely in an attempt to lose weight, and now are hooked. They might as well be addicts. Obviously, I am biased against them, but here is an interesting article to get you started about thinking about the effects of artificial sweeteners. Finding a solution to the wickedly sharp sweet tooth is a tricky one at best, and pretty damn hard when you have overwhelming appetite cravings due to your illness.

Tip 2: Eat more organic vegetables and fruits

Well, naturally. But if you're like me, you swing between these wild opposites of never being hungry, or craving the worst kinds of foods. And what's more, a blanket statement like this is really not very helpful since there are many known aggravators of hypothyroid symptoms that most people actually associate with healthy options. Broccoli, kale, cabbage, almonds, peanuts, soybeans, grapes, and strawberries are best to be avoided by someone with hypothyroidism. Ironic, isn't it? Eating healthy could, in fact, make me sicker.

Tip 3: Minimize consumption of caffeine

Haha. Right. No really, some days, I can ONLY get out of bed because I know a cup of coffee is waiting for me. And I don't mean like the way you see on commercials or in movies, I mean it is literally the only thing that I know will stop me from crawling back to bed an hour after I get up like the walking dead. The cruelty of caffeine for someone with hypothyroidism is that the extreme fatigue we deal with makes the dependence on a stimulant like caffeine the only way we can manage to impersonate a regular person, but this disease often accompanies damage to the adrenal glands, which are the great little tortilla shaped glands perched on top of the kidneys that are responsible for the boost of adrenaline involved in the fight or flight response. Too much stimulation (such as constant stress or overuse of caffeine) strains the adrenals, and they can't function adequately anymore. So, class, hypothyroidism=chronic fatigue. Chronic fatigue=dependence on caffeine to function. Dependence on caffeine=damaged adrenals. Damaged adrenals=even greater fatigue. Can you see the nasty cycle here? I KNOW it's bad for me, but many days, it's the only energy I have.

Tip 4: Get sufficient sleep

Oh hey, did I mention that ANOTHER common symptom of thyroid disease is disrupted sleep patterns? That means, for me, that I am practically a zombie for most of the morning. I get a teeny boost of energy around ten or eleven in the morning (often thanks to my morning coffee--see tip 3 above), and then around three I feel like I need to use toothpicks to hold my eyelids open like in old-timey cartoons. Round about eight I get FATIGUED--as in, dead on my feet, barely functioning cognitively, don't bother talking to me because I'm hardly coherent exhausted. If I manage to (or must) make it to nine, then BAM my brain clicks on, and I'm revving like a race car. Go go go, zoom zoom zoom, I'm buzzing like an angry beehive. This lasts from anywhere between nine-ish and four in the morning. Then I fall into a fitful sleep, where I wake up every hour on the hour. Then I get up at six to get my family ready for the morning, and start it all over again. I would give just about anything for a decent night's sleep.

Tip 5: Drink lots of water

Sounds simple enough. And to be fair, it seems like everyone is supposed to be drinking more water, no matter what state their health is in. One of the most insidious secrets of modern society--from a health standpoint--is the prevalence of fluoride in drinking water. Even fancy-schmancy bottled water regularly has fluoride in it. Contrary to what many people have been led to believe, this soluble salt is found in water sources both naturally as calcium fluoride, and artificially as sodium fluoride--which is what is usually added to drinking water, and happens to be produced as a byproduct of nuclear, aluminum, and fertilizer industries--and is not nearly as safe as we've been told. Fluoride has an especially damaging effect on the endocrine system, and has actually been used as a treatment to decrease thyroid function historically for hyperthyroid patients. As a result, "drinking more water," while obviously well-intentioned, can have a most unwanted effect on the overall thyroid health of someone with thyroid disease. Well, crap.

Okay, okay, okay, if you are still with me, you deserve a cookie and some milk, or maybe even a stiff drink. I don't like reading uber-negative shit and I'm sure you don't either. What I really should be trying to emphasize here is that not everyone responds to treatment equally, not everyone can follow "these simple steps" and get better, and its critically important to educate yourself--REALLY educate yourself because you must be your own best advocate--so that you can determine what treatments are best for you.

I don't like being looked at like another fat, middle-aged mom, or a lazy good-for-nothing. I despise the loss of brain function I've suffered, as well as the slow drain of my creativity. I am truthfully quite bitter about the things my body can't seem to do now, that it used to be able to. I'm trying to get healthy, but the truth is I miss my cute, thin, fast-thinking self. Sometimes I despair that she is gone forever. Sometimes I hate the body I wake up in. And sometimes I even remember to forgive this poor vessel, with parts breaking down and misfiring, that has to function at a deficit all the time.