Thursday, March 31, 2011

The Solo

Lyme is Real, Spirochicks contributor

Imagine you are thirteen. Lyme spirochetes have invaded your spine and you are living each day with severe pain. They've also invaded your brain making it difficult to remember. You're wrestling with horrible headaches. The new medications are working, but your body is experiencing deep fatigue as it works to handle the infection and dying bacteria. You are herxing, causing symptoms to flare. You want to stay in bed.

But remember! You are thirteen. You're in the eighth grade. Singing, dancing, band, musicals, family, friends, school and teachers are your loves. They're the reason you pull yourself from bed each day, even the days that are the hardest you've yet to face. And then, of course there's the solo.

A solo in a band that has received straight ones for the past thirty-five years. Festival is fast approaching and your solo continues to be a challenge. You play the oboe. You're wrestling with reeds. Your best one gives out one day in rehearsal, right in the middle of your solo, shaking your confidence. Your parents send for more, but they're held up in a snowstorm for several days. They arrive just before the pre-festival concert. The bands combine and you're now playing with even more peers. Stress builds even more. We all know how stress affects Lyme. It becomes even harder for you to function. Your mother is questioning her own decision years ago, to encourage you to play the oboe.

You are strong. You don't give up. Your directors continue to inspire and help you. A dear friend comes over before school for more lessons. A wise director tells you the band's rating will not be affected by your solo. The new medication starts working its magic. The cranial-sacral massages are lifting you out of the pain cycle you are in. You play well at the pre-festival concert in front of the parents and your confidence grows. For the next two weeks, you continue to work. You add vibrato and on the day of the concert, the notes bring tears to the eyes of those who love you as they think of all you've accomplished. What you've overcome.

Then the judge steps in front of the audience to talk with your band. He asks you all to look at measure 19 in the second piece. "Where is the oboe player?" he asks.

Hearts skip a beat. You raise your hand. He asks the others to musically step out of your way. He wants your notes to carry through the auditorium, at the same time reassuring you that he could hear you the first time. He wants the piece to be even more beautiful. You play it through again.

Today you learned the joy that can be gained when you face your demons. By daring to dream, you had the courage to soar. You are such an inspiration!!!

Sunday, March 13, 2011

Guest Post::Tips to Help Prevent Your Dog from Getting Lyme Disease

By Guest SpiroChick, Susan Figurski

Being a fellow Spiro Chick the one thing I have definitely noticed among others in the Lyme community is our love for animals. Some would say I am an animal fanatic, and I don't mind that description one bit since it is well known that 'the heart of a person is judged by their treatment of animals', so in my mind I must have a HUGE heart. But seriously, there is no feeling in the world like being in the same presence as an animal especially the crazy and adorable antics of a dog.

To say that I have a love for dogs is understatement, as you can see by this picture where I'm just about attacking this little King Charles Cavalier. I have to admit, when I first saw this picture I was a little embarrassed , but then I laughed out loud because this picture had captured exactly what I was feeling at that moment, such happiness and excitement, I wanted to eat him up and clearly I almost did!!!

Most likely if you are reading this article then you are painfully aware that a person can get Lyme from quite a few different vectors and that it is not just contained to the teeny tiny deer tick. I actually contracted Lyme from a dog tick after just 2 months from starting my dream dog grooming business. I thought it would be great way to work with dogs on a daily business and it was, until the day that dreaded dog tick infected me with its poison. This dog tick didn't come from a mangy mutt, but from a show dog that lived in an upscale gated community located directly on a golf course which backed up to a nature preserve, we all know how Lyme doesn't discriminate.

I learned a great deal working in the animal industry including how dogs are susceptible to many diseases that inflict humans, including Lyme. With that being said I would like to help keep your furry four legged friend safe from ticks as well as what to do if you suspect your dog may have been bitten by a tick that was infected with Lyme.

If you find a tick on your dog you will need to protect yourself from any diseases it may be carrying so grab a pair of latex gloves. The recommended tool to remove a tick is a pair of hemostats, a surgical tool that can be purchased from any dog supply store but if you don't have these on hand, no worries a good old pair of tweezers will do. Using a match or Vaseline to try and 'coax' the tick out will only enrage it and make it embed further into the dog's skin.

The best way to remove a tick is by grabbing the head as close to the dogs skin as possible and then very slowly pull it straight out. Be certain NOT to squeeze the tick as this will cause the tick to release more toxins into your dog making him more susceptible to disease. Once the tick is completely removed place it into a container filled with rubbing alcohol to not only kill the tick but also keep it secure in case you see any signs of illness in your dog down the road.

Lyme disease symptoms to watch for in your dog include:

* A fever between 103 and 105 degrees

* Lameness which appears suddenly

* Swelling in joints that moves from one leg to another

* Swollen lymph glands

* Lethargy

* Loss of appetite

If your dog starts to project one or more of these symptoms, especially if you recently removed a tick from your dog within a 3 month period, be sure to ask your Veterinarian for a Lyme test as soon as possible. If Lyme is caught early treatment is simple and successful, we all know how familiar and true that statement is. To keep your dog free from Lyme check him on a regular basis all year round no matter what part of the country you may live. There are many different tick preventatives on the market that come in both topical and oral forms so be sure to discuss these options with your Veterinarian as to which would be the best fit for your dog.

If you enjoyed this piece about keeping your dog safe from ticks and you would like to read more dog related articles like this please visit my page

If you click on the subscribe button it will automatically email you alerts to let you know when I write my next article. By the way I was horribly ill that day my profile picture was taken, it was definitely a “fake it till you make it” type of day, which I know so many of you can relate to.

Wednesday, March 9, 2011

The Perfectly Abnormal Condo

By Candice, SpiroChicks Contributer

This past weekend, I paid a visit to my Grandparents’ house. When you’re chronically sick with a rather complex disease, packing for even a short trip can be quite the feat. Though it took a terribly long time to accomplish packing myself up, I was proud of the fact that I made it through the process in once piece, and that I had condensed my belongings to what seemed to me like a measly one suitcase, six cloth shopping bags, a garbage bag and a small laundry basket. Yet to my surprise, upon arriving to pick me up, my Grandparents marveled at the amount of things that were coming along with me.

“How could such a little girl need so many things?” My Grandma said with a smile, as she gazed wide-eyed at my pile of loot. 

“After we’re done loading your bags into the car, I hope there’s still room left to bring you too!”

I followed her stare back to my belongings and scratched my head. It didn’t seem so bad, considering that when I’m preparing to take a day trip to visit my doctor every week, I pack as though I plan to move into his office. This was the first sign that while I’ve been living with another lyme patient, I’ve gotten a little too used to being perfectly abnormal.

Fellow SpiroChick and lyme patient, Ashley, and I have been roommates for over one month now. It’s been a pretty fantastic experience. We’ve of course hit many of the trials and tribulations of both life and of being a Late Stage Lyme patient, but we’ve taken on those obstacles together. Living with someone who’s had to adapt to the same lifestyle that you have, and who has battled the same battle that you fight on a daily basis, provides an invaluable sense of understanding and comfort. It’s also quite possible that it provides a false sense of normalcy. To us, our daily routine now feels “average”, because both of us live it out together under the same roof. When in reality, we might as well be living on Mars.

We often joke that we’re never going to be able to find men that are going to want to date us, considering our odd acquired habits and rituals. After all, how many guys would be thrilled to come home to a girlfriend doing yoga on the living room floor while she’s got a pot of millet steaming on the kitchen stove?  A magic eight ball would probably tell me “outlook not so good”.  

Yet, I love it. I love our perfectly abnormal life. A year or so ago though, I used to resent it a little. My daily life would feel as though the world was spinning on around me while I was stuck stagnantly in place, trapped in some alternate reality. Now I realize though that your world is what you make it. My world may be small, full of monumental obstacles, and entirely stripped of what it used to be, but it was never going to grow if I didn’t accept it. Once I did, I found that though my world is quite difficult and far from normal, it’s unique, and there are still plenty of opportunities to enjoy it. That is, if you’re looking in the right places.

It’s far easier to fair when you’re living with someone whose reality resembles your own. While I stood in my Grandmother’s kitchen this weekend, she looked on apologetically with a crinkled nose, as I prepared a glass of liquid medication and counted out the smelly drops as they fell from the dropper.  

It must be wonderful to have a roommate who has to do these kinds of things too.” she said. I nodded in complete agreement. 

“Nana, off of the top of my head, I could probably think of 15 reasons why living with another late stage lyme patient has been nothing short of fabulous.”

15 Reasons Why Two Late Stage Lyme Patients Make Fabulously Strange Roommates

1. Most average roommates have designated cupboards for alcohol, or for easy-to-prepare foods like hamburger helper or macaroni and cheese.  Instead, you and your roommate each have entire shelves sectioned off for pills, potions, and medication. Your easy to prepare “go-to food” cabinet consists of cans of organic white beans and jars of raw sesame seed butter. 
2. Lyme patients often have to set alarms in order to wake up on time, remember to take pills, or to assure they eat enough throughout the day. When two patients live together though, you can double as both roommates and walking, talking alarm clocks. You typically know when it’s getting to be late and your roommate hasn’t taken her adrenal medication yet, and she also knows that it’s time to eat again when she starts to smell your brussel sprouts steaming from two rooms away. 
3. With all of the cabbage, cauliflower, broccoli and brussel sprouts that you both typically steam, the average person might walk into your house and think it smells like the dog has some pretty gnarly gas. But when your roommate comes home from the grocery store and gets a whiff of a cruciferous veggie steaming, she drops everything and starts cooking too, because beef and cabbage sounds like its going to hit the spot. 
4. You and your roommate both know “the face”. You know, that face that you get when your brain starts to feel like it’s full of hot wax and cotton balls. When you have company over and one of you starts to glaze over and zone out, the other picks up on it pronto and takes over the conversation. Typically, “the face” goes unnoticed by guests and “normal” folks. They just think you’re just quite an intent listener.
5. Your roommate doesn’t think it’s weird that you constantly feel motivated to go lay flat on the front lawn. In fact, she encourages it, and will lay out there with you despite the status of the weather reports. There’s even a name for it: Earthing. Your neighbors probably half expect you both to start hugging trees, but it’s all good. 
6. You both sort of instinctively know what might be helpful to one another. When your roommate throws out her back, you know how long her hot rice pack takes to heat in the microwave. When you're packing to head out to the doctor, you know what to throw in your snack bag for her in case she gets hungry too. When she's got somewhere to be and she's running short on time, you know how to cook the lunch she was hoping to pack. Whereas asking just anyone to do such things might be a little overwhelming if they aren't fluent in "lyme patient".  
 7.  Your roommate knows that when she catches you lathering up your arms and legs with the same coconut oil you just cooked your veggies in, you’re not planning to roast yourself too. To the both of you, cooking oil doubles as a perfectly acceptable organic body lotion. 
8. When you open up the gnarly bottle of pills that makes your kitchen smell like stinky feet, your roommate doesn’t cringe and check to see if something curled up and died in your garbage disposal. Instead, she hurries to the cupboard because the pungent smell reminds her that it’s time to take her afternoon dose of pills too. 
9. When you send out a friend or a family member to pick up some groceries for you at Whole Foods, you typically have to set aside 15 minutes to explain things like what swiss chard looks like, how to pronounce “quinoa”, and which aisle you might find gluten free oats. But when you hand your roommate your grocery list, she glances at it, then merely asks, “Rainbow chard or red? I like rainbow, myself.”
10. Instead of rolling her eyes every time some off-the-wall thing makes you sick, your roommate can often warn you before it even happens. If you’re on a walk and she breathes a whiff of gasoline before you do, she responds with a “quick, cover your nose!”. If she’d been two seconds later, she’d probably would have had to peel you off of the sidewalk. But if that had indeed happened, she wouldn’t have griped about that either.
 11. While most of the population believes that a scoop of vanilla ice cream is the ingredient that completes a fruit smoothie, you and your roommate think that a beverage isn’t perfectly blended until you’ve added an avocado. Most might scoff at adding anything green to their milkshake (unless it were mint chip ice cream), but you both don’t consider it to be complete if you haven’t.
12. While alternative healing therapies and the notion of “detox” seem outlandish to others, you both fully embrace them. At this rate, between her unconventional use of organic coffee and your use of a neti pot, you two are bound to make Roto Rooter jealous.
13. When the guy who's installing your new furnace comes in to test it out, he ends up sticking around for a while and chatting with you both, because he thinks you're intriguing. He then proceeds to ask what the lime green awareness bracelets that are sitting on your dining room table are for, and when you tell him, he asks if he can buy a few. He informs you that you both have a "righteous positive energy". 
14.  You and your roommate are oddly able to laugh during occurrences that most of the general public would find quite unnerving. When your heart starts going into strings of irregular heartbeats and your blood pressure cuff starts flashing all sorts of different abnormal codes and symbols, she doesn't get frustrated or anxious as she drives you to the doctor. Instead, you find things to laugh about on the way there, and you both even manage a giggle when you're forced to inch out of the car as though you're 112 years old.
15.  When you wake up and tell you're having a bad morning, you roommate can actually fathom what that might mean.  She doesn't think that "bad" might equate to feeling tired, achey, or sick to your stomach. She knows what this kind of sick feels like, because she understands what it's like to have every organ in your body affected by an infectious disease. And when she nods and tells you that she's sorry, she really, truly means it.

My life is challenging, unique, odd, timultuous, fascinating, and completely out of the ordinary. Yet I've come to discover that though I don't have a choice in what my life may look like right now, I can choose whether or not I'm going to accept it, and it's up to me to decide if I'm going to love it or hate it. Despite the hardship and lack of normalcy, I've chosen to love it. Living with another patient who has made the same commitment makes that choice a whole lot easier. Ashley and I live in a perfectly abnormal condo, and I've loved (almost) every minute of it.

Is your household perfectly abnormal too? Well then, rock on. 

Wednesday, March 2, 2011

I Don't Want a Band-Aid

By Ozone Amanda, SpiroChicks Contributor

I’m tired of my doctor being my drug dealer. Where is my doctor?

Put away the prescription pad! I know some of you out there rely on antibiotics for treatment and I believe in using whatever works for you. But, I’m tired of doctors ignoring the state of my overall health and simply handing me little squares of papers for lyme-related pain, fatigue, and depression.

For years before I was diagnosed, I saw a series of doctors who had no recourse but their pads. I don’t believe they were insincere or uncaring, but they did little to accomplish what I saw as their main role: helping me figure out the root of my health problems.

I would sit on white paper-covered tables and they would ask me about my symptoms and then hand me a prescription to address each one. I’d protest that, for instance, I didn’t want to just mask the pain because that wouldn’t make it go away and I didn’t want to be taking medication for it everyday, indefinitely...Rather, I wanted to know what was wrong. The doctor said my problems stemmed from a “physical manifestation of psychological stress” and I should just use the prescription on “particularly bad days.” But, everyday was bad. And, my pain was connected to my lethargy and an overall feeling of ill health. What would the medication do for that? Answer: there’s always more medication. Even drugs to counteract the side effects of other drugs.

One doctor actually asked me, pen poised over his prescription pad, “On a scale of 1 to 10, what is an acceptable level of pain for you to live with?” Umm, how about zero? That wasn’t an option, he said. “We all live with some amount of pain.”

This may be heresy to say to the lyme community—and on days when I am really suffering, I will deny I ever said this—but, I am almost grateful to Borrelia burgdorferi (Bb) for changing the way I think about health. When I beat this infection, my body will have accomplished a Herculean feat, but so will my mindset. I used to think doctors understood health and worked to understand the intricacies of causational factors, to uncover and address the root cause of health issues. Now, I realize that a large percentage of the medical community has been educated to think in terms of large “band-aids.” A band-aid for pain, a band-aid for insomnia, a band-aid for depression. I’m not saying that all drugs are useless or unhelpful, or that some people haven’t been helped through some difficult times with the use of prescription drugs. But, it seems to me that, when many doctors ask about your problems or symptoms, they almost inevitably conclude by reaching for their prescription pads. Having a Bb infection has taught me to look past individual symptoms—like hair loss, physical pain, fatigue—and past treating them individually—as unconnected to the rest of me—to see the larger picture.

Don’t worry, though—as helpful as that realization has been, I will never say “thank you” to those infectious, devastating buggers.