This Crazy Lyfe: Kristen Gasser

As a writer, getting a feel for how people manage crisis is often best served by reading first hand accounts. After all, reading a diary by someone who lived during Civil War times will give a different insight than a history book written over a century later.

Earlier this week, I posted an interview with author Brandilyn Collins. Her novel, Over the Edge, centers around a woman who has been infected with Lyme Disease. Don't forget, leave a comment on this blog this month to be eligible to win a copy of this novel and another great surprise!

A good friend of mine has dealt with Lyme Disease for twenty years. Today, she posts a first hand account of what it's been like. Welcome, Kristen!

So, reality is, you don’t get superhuman powers when you’re bit by a tick. Instead, you get super crazy symptoms and doctors that don’t know what to think of you.

You tell them you are beyond tired and have major joint pain in your knees and hands, muscle weakness. They tell you to exercise more. You do. That makes you physically ill with vomiting and such. It makes the joint pain worse. You tell them exercise makes you sick and doesn’t help the tiredness. The doctor tells you you’re just depressed and prescribes something to help.

If you don’t take the prescribed pills, you’re told you’re rebellious. You look for a new doctor. The new doctor takes one look at you and says, “You look perfectly healthy, what are you doing here?” You reiterate your complaints as explained to the first doctor adding, “I’m having memory problems.”  He says, “Everyone forgets things, that’s normal.”

You know it’s beyond “normal”.

You tell him you have chest pain and were diagnosed with Mitral Valve Prolapse. He listens and muffles a laugh, saying he can’t hear anything and alludes that you’re a hypochondriac.

So, you go on about lyfe, as best you can… trying to live “as if” you’re healthy.

Finally, a doctor puts the pieces together. You were rock climbing in Wisconsin? The symptoms came on soon after? A tick bite? A test confirms it: Lyme disease.

But you were treated for what was assumed to be Rheumatic Fever. That should have taken care of the Lyme disease. We’ll just give you one more week of a more powerful antibiotic and consider you cured.

Then, one day, you’re in class and you just don’t feel right. You head to the bathroom, get very sick in every way possible, clean up, and everything goes fuzzy. You hear people talking, you can’t move, can’t talk. They put you on the stretcher and take you to the ER. In the end, they can’t figure out what’s going on, so they prescribe an antibiotic, they’re not even sure what it’s for.

It goes on like this for awhile. More symptoms that don’t make sense (digestive problems, bladder problems, eye problems, thyroid problems, back pain, canker sores, headaches, food allergies, anemia, dizziness, insomnia, heat sensitivity, brain fog, and that confounded fatigue).  You get tired of the doctors laughing at you, alluding that you’re a hypochondriac, acting arrogantly because you ask intelligent questions and hearing time after time, “Lyme Disease IS NOT a chronic illness, something else is causing your vast and varied symptoms, but we don’t know what.” 

You feel like you are supposed to try to go on and live lyfe “as if”…

So, you try the “natural” route: eating healthier, eating organic, supplements, herbs, juicing, cleanses, chiropractic visits. This seems to stay the symptoms at times, but there is something lurking underneath, literally… and nothing seems to really help.

For 20 years, (half of my life!) this has been my story. Well, the short version.

And I’m still trying to process the connection between Lyme Disease and all the other issues my body has. I guess it starts with thinking back to the beginning and feeling like something invaded my body and caused it to turn against itself. And there is the concern that even if I treat all of these symptoms, but the Lyme connection is ignored that it will find another part of my body to attack.

The initial blank stare I get from doctors and the feeling of every doctor wanting to ignore the diagnosis of Lyme disease makes me feel like everyone just thinks I’m crazy.

I do not want sympathy.

I do want support. Acknowledgment that I’m not crazy. Respect that I do know my body and knew 20 years ago that something wasn’t right. I want a doctor to take some time to look at the possibility that Lyme can trigger an autoimmune response in my body, that it can cause the joint pain, fatigue, and muscle weakness.

I feel alone in this when every doctor wants to ignore it. It is a very real part of my life. When they dismiss it, it hurts. It makes me feel belittled. The result is me trying to act “as if” I don’t have a chronic illness. It makes me afraid to talk about it. Makes me unsure of myself and my ability to communicate. And it makes me push myself beyond my limits, which makes the symptoms worse.

I haven’t even mentioned the emotional aspect to this. And I really try not to let on how scared I am at times. I joke about the weakness, the “having to go to the bathroom so often”, forgetting things, flipping words and letters around. It was difficult having doctors tell me I needed to be doing more, telling me I was depressed.

I did feel like a hypochondriac, still do at times. I felt like I had done something wrong to cause what was happening in my body, yet had no control over stopping it. I still feel this way.  I don’t know how to communicate about this illness, how to help doctors (and friends) understand that, while I don’t look ill, I am.

I have limits.

I have to have limits so I can keep pushing on without falling too hard while living “as if” in the reality of this crazy lyfe.

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The Lyme Wars: Part 2/2

We're concluding our interview with author Brandilyn Collins. Today, we focus on healing, what medical professionals can do to improve the care for those affected by chronic illness and what's next on Brandilyn's writing schedule. Remember, leave a comment this month on this blog and be eligible to win a free copy of her novel and another special surprise. Winner announced June 1, 2011.

Jordyn: You’ve been open about God healing you during your first Lyme infection. Did your feelings/attitude toward God change when you were re-infected? Are some of these attitudes reflected in Janessa’s attitude toward God as displayed in the novel?

Brandilyn: When I was reinfected with Lyme in 2009, I couldn’t believe it! I gave God a hard talking-to. What are you doing? We’ve been here, done this. And aren’t you worried about your reputation—so many people know you cured me once? What if they doubt you now? Well first, God informed me that He’d been dealing with the reputation thing since He brought the Israelites out of Egypt, so thank you very much, but He had that under control. Second, I can see now in hindsight that if I hadn’t experienced round number two of Lyme, I wouldn’t have written Over the Edge. As it turned out, six months of antibiotics cured me of that round.

Regarding Janessa, her spiritual journey is similar to mine. When I had Lyme the first time, I learned how to pray the psalms, both as petition and in praise—whether I felt like praising God or not. (Most of the time I didn’t.) It was a wonderful lesson that has changed me to this day.

Jordyn: Any words of wisdom for doctors/nurses in dealing with patients who have chronic pain/illness?

Brandilyn: Please, please don’t tell them it’s “all in their head” or some form thereof. Just because you can’t diagnose an illness—that doesn’t mean the patient simply wants attention or is a hypochondriac. It’s bad enough facing chronic illness. Worse still to be invalidated by the medical community. And please—educate yourself about Lyme. Admittedly, this is hard to do, because typical education would be in the form of reading published articles in esteemed medical journals. Unfortunately these articles are based on the old, wrong assumptions about Lyme (or the authors simply ignore other research altogether). Google “lyme wars” to start online research. And—I have to get in that plug—read Over the Edge. It will alert you to the symptoms and issues involved in the Lyme wars—and how those wars came about.

Secondly, I want to talk to you doctors/nurses who do know about Lyme but are afraid to diagnose it. I understand your dilemma. I understand you don’t want to get into a battle between treating a patient long-term as he or she needs and your medical board. The political climate for you regarding Lyme is very bad. But please don’t send that patient away, saying, “I don’t know what’s wrong with you.” At least admit to the patient that he may have Lyme and refer him to an organization that can help find a Lyme doctor. (Googling “find a Lyme literate doctor” is easy.) Leaving a possible Lyme patient completely in the dark opens him up to extended, further debilitating disease—if he does indeed have Lyme. I’ve seen this happen. I’ve seen Lyme patients lose all quality of life and become bedridden because their doctors didn’t want to admit Lyme, even when those doctors recognized the signs. I’ve even seen doctors refuse to test for Lyme when the patient requested it.

Jordyn: Any final thoughts? What’s next on your writing schedule?

Brandilyn: I’ve already turned in a book written after Over the Edge—another Seatbelt Suspense® titled Gone to Ground. (Serial killings in small-town Mississippi, in which three women know who the killer is and independent of each other, determine to bring him down—but they each suspect a different man.) I’m now writing the novel after that, titled Double Blind—about a brain chip clinical trial gone awry. As May 2011 rolls around I’ll be touring for Over the Edge. Currently planned stops/media appearances are in the areas of Dallas, Milwaukee, Minneapolis, and Chicago. Please check the Appearances page on my web site for further details. I also have a Lyme page on my site for further information on the disease and the “Lyme wars.”

Good health and blessings to all. ~ Brandilyn

Thank you so much Brandilyn for your time. Blessings to you in your writing and to the success of Over the Edge.

Even in writing fiction, it's a must to be factual for the story to ring true. Brandilyn also started a web-site for Lyme patients to discuss their experiences as well as some additional education regarding Lyme disease. These are great resources for research. You can find those by following these links:

http://www.brandilyncollins.com/lyme.html

http://lyme-overtheedge.blogspot.com/

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The Lyme Wars: Part 1/2

What do you do if your a novelist, infected with a potentially life-threatening illness (twice) and there are two camps of medical thought as to the diagnosis, seriousness and treatment of that illness?

How about... write a suspense novel.

This is the situation that best-selling author Brandilyn Collins found herself in. Over the Edge is a fiction novel based on her real life experience of battling the medical community in their current thought process concerning Lyme Disease. I have to confess, I learned a lot about Lyme while reading this engrossing suspense novel.

I'm honored to have the chance to interview Brandilyn for her thoughts on the Lyme Wars this week. Leave a comment this month on the blog to be eligible to win a copy of Over the Edge and a special surprise with it! Winner announced June 1, 2011.

Welcome to Redwood's Medical Edge, Brandilyn!

Jordyn: I was told once by an editor with a well-known publishing house that “issue-based novels don’t sell well.” Does this thinking concern you especially when writing this novel under a new publisher?

Brandilyn: First, thanks very much for our discussion today. I appreciate the opportunity.

As to your question—I never even considered it. A couple thoughts: One, it’s important that the novel first and foremost be about entertainment, not informing. If the author fails to keep readers turning pages, those readers will stop reading—and never “hear” the message. So when I sat down to write Over the Edge, topmost in my mind was meeting the four-point promise of my Seatbelt Suspense® brand: fast-paced, character-driven suspense with myriad twists and an interwoven thread of faith. Two, once I’ve met my brand promise in Over the Edge, I then have thousands of potential new readers—those in the Lyme community, who will feel validated by the story. So in that case, an issue-based novel only helps in marketing. Further, I’m passionate about the subject, which can only help as I interview in various venues.

Jordyn: Redwood’s Medical Edge focuses on dispelling medical myths that are commonly perpetuated in writing. What do you consider to be the 3 most popular myths among the lay public concerning Lyme disease? Among medical professionals?

Brandilyn: Great question! Among medical professionals: (1) That Lyme disease can always be cured by a two- to four-week round of antibiotics. In truth, chronic Lyme can take months, even years, to treat with antibiotics. (2) That a patient must display the bulls-eye rash to have Lyme. Many patients never have the rash. Others may have a rash, but it doesn’t look like a bulls-eye. (3) That a negative test result means a patient doesn’t have Lyme. The CDC (Centers for Disease Control) says on its web site that Lyme is a clinical diagnosis, meaning that the entire presentation of the patient is taken into account. In addition, tests for Lyme are notoriously unreliable, partly due to faulty criteria for certain tests, and partly due to the nature of the Borrelia (the bacteria that cause Lyme). Borrelia are a very formidable foe. They can hide from the body’s immune system by changing their outer protein coat, for instance. Since tests look for antibodies to the Borrelia, not the bacteria themselves, a true Lyme patient can test negative. Therefore symptoms of a patient can mean more to the Lyme-literate doctor than test results.

Myths among the lay public: (1) That doctors in general, or even specialists like Infectious Disease Specialists, know how to properly test and diagnose Lyme. Wrong—reference above. (2) That Lyme isn’t very widespread. In reality, the CDC has verified Lyme in all 50 states. What’s more, the cases of Lyme reported to and verified by the CDC is estimated to be only one-tenth of the actual number of cases. (3) That you’ll always know if you’ve been bitten by a tick. Nope. Many Lyme patients never knew they were bitten. The most likely stage for a Lyme-infested tick to transmit is during its nymph stage, in which it’s no bigger than the head of a pin. Very hard to spot on a body, especially after it’s half submerged under the skin.

Jordyn: You list several recommendations in the Author’s Note section to improve care for Lyme patients. If you could pick one for nationwide implementation, which do you think would have the most beneficial affect?

Brandilyn: The first step, even before redefining treatment, is to create better testing. Too many patients test negative for Lyme under the CDC criteria, then take years before they find a Lyme-literate doctor to administer more accurate tests, which show positive. Meanwhile the Borrelia have had time to spread throughout the body systems and burrow deep into body tissue, where they’re hard to eradicate. Lyme patients, therefore, face a double whammy. They’re first told they don’t have Lyme—when, if they’d been allowed to catch the disease early, it in fact is treatable with two to four weeks of antibiotics. Then when they’re finally diagnosed months to years later—when the disease will now take long-term antibiotics—they’re denied the long-term treatment.

Jordyn: Are you a proponent of a Lyme vaccine?

Brandilyn: The first Lyme vaccine was a major disaster and was soon pulled off the market. Of course I’d be in favor of a vaccine that really worked. But the medical profession has such a hard time even defining Lyme. It was defined far too narrowly the first time around and is still being too narrowly defined. Hard to create an effective vaccine under those conditions. However, researchers continue to work on it.

We'll continue this two-part interview on Wednesday. What's your Lyme IQ? The following are two resources for Lyme education. These were interesting to me after reading Brandilyn's book as some of the myths she is trying to expose are perpetuated in these clips. Can you find what they are? 

http://www.medicinenet.com/lyme_disease_pictures_slideshow/article.htm

Take the Lyme Disease Quiz: Test Your Medical IQ on MedicineNet.com

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