Una Muses

Lyme Doc in Theatres

Unaspenser — Thu, 25 Jun 2009 02:02:31 GMT

The award-winning documentary about the politcally-charged epidemic of Lyme disease has finally had it's theatrical release to lots of rave reviews. If you've ever known someone with Lyme disease and couldn't understand why why her doctors weren't helping her or his insurance company was refusing to pay for tests and treatment or how this disease disabled not just her body, but her entire life, then this film is a must see. What's happening around Lyme disease is a tragedy of epidemic proportion. We need more research to find out how to help patients with Lyme and we need legislation to protect doctors who are trying to help while the science is unclear.

Please go see this film. And send everyone you know. It is important that we all become aware of this situation. It is a stark example of what is wrong with our health care system. A system that is about profits, not patients.

The following is a pleas from the makers of the film:

Dear Friends & Fans:

Following the June 19th theatrical release of UNDER OUR SKIN in New York, enthusiastic film reviews are piling-up. Stephen Holden, top film critic at the The New York Times called it “heart-rending” and an “inflammatory documentary [that] takes aim at the medical establishment.” Here is a sampling of other reviews:

“Head-spinning…riveting…a rigorously researched and highly thorough piece of investigative reporting.”
- Lauren Wissot, Slant Magazine

“Infectiously persuasive…targets both the heart and brain.”
- Sarah Sluis, Hollywood Reporter

“A powerful film and cautionary tale….as significant as Michael Moore’s SICKO.
- Curt Schleier, Film SoundOff

“[A] dizzying and dramatic documentary…handsomely reported and photographed.”
-Andrew O’Hehir, Salon

“Gripping, brilliantly executed...a true landmark of the genre...UNDER OUR SKIN triumphs!”
- Paul Bower, Tiny Mix Tapes

“A scary expose [and] damning indictment of the broken health care system.”
- Kam Williams, NewsBlaze

“Compelling…makes a very convincing case [about] one of the greatest medical failures of all time.”
- Matthew Lucas, From The Front Row

“A vital, insightful, brave and moving documentary that will wake you up and shake you up.”
- Avi Offer, NYC Movie Guru

While positive reviews and press coverage have been abundant, box-office returns are all that counts to keep up the momentum. We need to take the film and the issue from Lyme Street to Main Street, and the best way to make this happen is to fill seats in theaters. Even if you’ve seen the film, we’re calling on you to make it to the theater or buy advance tickets. Make your voice heard through the box-office!

UNDER OUR SKIN is showing right now or starting this weekend in the following cities: Los Angeles, Washington, DC, San Diego, Santa Cruz, New York City (24th-25th only), Chicago (28th only), Albany (24th-25th only), Red Bank, NJ (25th only) and Shepherdstown, WV (26th only). Click here for a list of all upcoming screenings, and click here to find out ways you can help.

All nationwide theatrical screenings on Saturday, June 27th are presented in conjunction with President Obama’s Organizing for America’s National Health Care Day of Service. We are joining with hundreds of others grass-roots activists and initiatives to bring awareness to the country’s failing health care system. Bring a posse with you, join with others, and turn a trip to the movies into a vote--and demand--for change!

Sincerely,

Andy, Eve, Kris & the team at Open Eye Pictures

Eek! I Have to Write a Bio!

Unaspenser — Tue, 26 May 2009 21:48:22 GMT

I've entered the world of political advocacy lately because of what I've experienced with Lyme disease. I've always been passionate about the meta-issues that are addressed in politics, but didn't really know how to get in there, where to begin, what meaningful role I might play. Advocating for issues related to Lyme Disease is so concrete for me, it's a natural place to dive in, I suppose.

Of course, since i'm living with a debiiatating case of Lyme, it's a bit tricky figuring out exactly what I might do. Writing has to be a big part of that. I can't talk on the phone. It quite literally hurts my ears, both externally and internally, and I can't hear well and I lose focus. I can't go to a lot of meetings. If I could, I'd be working a real job. But I can write. And I can do some behind the scenes organizing.

Recently, I've been invited to write on a fairly well-traficked political blog. I'm honored to be invited. My first hurdle to activating this invitation, though, brings up a lot for me. I have to write a bio. Eek!

I've never been good at the "sum yourself up in a paragraph or two" exercise. Of course, you can never get a full sense of somebody from these. I guess, I just have a hard time figuring out what's pertinent and/or interesting enough for the context. Additionally, I'm now a little self-conscious about my current state of being. My bio 4 years ago would look very different than it does now, in terms of "what I do". What do I do anyway? Why would anybody be interested in hearing what I have to say, now that I'm just a homebound do-nothing?

In letting my new supervisor know that I was struggling to write a bio, I wrote this:

Okay. I guess I'd better get to it. I haven't had a photo taken in a while. And I absolutely struggle with "bios". Especially now that I've been disabled with Lyme the last few years, because I feel so "useless". I don't like it to define me, and yet, it defines my lifestyle. I'm like 3 people, the girl that grew up in a very abusive, ever-moving military household, the young woman who did a lot of work to gain emotional health and be the vibrant, active, world-traveling person she really is, and now this practically homebound mother,trapped in her mind by a devastating disease. Of course, it's brought out the writer me and all my passion has to go there and into my parenting, as I have no other way to expend it. It's strange though, to realize that I used to backback through Brazil on my own, travel to Sri Lanka and the Maldives on my own. That I SCUBA'd and rode horses and skied a crevasse and started businesses, gave birth at home. That I took a 3-year course in being a spiritual therapist just after getting my MBA. That I've lain down in front of machinery to protect a compost site and faced off with the highest-powered lawyers in Boston to protect my friend. And now, a couple of hours in the local park can leave me bedridden for days.

Yes, a couple of hours in the park can do me in. I learned a hard lesson yesterday about what kinds of things I need in place if I'm to try and go out. This might be hard to understand if you're a healthy person. The Spoon Theory may help you get a glimpse of what it's like to live this way.

What kind of life is this? What kind of bio does one write when this is one's life?

Ray of Hope

Unaspenser — Sun, 24 May 2009 04:54:42 GMT

In early April I reported some of what I learned from some neurological tests done in New York City. Yesterday, I saw my lead neurologist and learned even more, so I thought I'd let you know about it as part of Lyme Awareness Month.

My neurologist has been doing some groundbreaking research regarding Lyme. His view of what Lyme does to the body and what can be done to offset that is very interesting. Moreover, how insurance gets in the way of me and many Lyme patients receiving treatment and what that can lead to is devastating. My experience highlights why we need legislation that removes the for-profit motive from health insurance. My neurologist highlights just how important it is to have a dedicated doctor who not only doggedly pursues finding out what you need to regain health, but does all he can to help you navigate the purposefully mismarked insurance landscape.

The neurology specialist in NYC had informed me on the spot that I had acquired Dysautonomia. As a result of having Lyme my autonomic nervous system was now damaged. This explained my erratic heartbeats, dizziness, difficulty breathing and much of my digestive difficulties, as well as, why my body couldn't regulate temperature properly.

What I learned yesterday is that the Lyme didn't just progress into my autonomic system, it triggered a neurologic auto-immune disease (NAID). I now have a Lyme complication called Chronic Inflammatory Demyelinating Polyneuropathy (CIPD). (Similar to MS, but in the peripheral nerves)

What is CIPD?

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease.

This is scary stuff. It's a far cry from being told in 2005 that I didn't have Lyme. It's a leap across The Pond from being told, when I was finally diagnosed in 2007, that Lyme is easy to treat with just a few weeks of antibiotics. It's the polar opposite from this idea that there is no such thing as Chronic Lyme.

What I'm learning now is that there is no proof that the infectious spirochetes can ever be eradicated from the body. In fact, there is "culture supported data suggesting otherwise". (See study by Hunfeld et al)

Additionally, "persistent presence of non-infective Lyme spirochetes after adequate antibiotic treatment can lead to ongoing disease due to autoimmune mechanisms". And there is the highly likely presence of other tick-borne agents creating persistent illness.

This disease is anything but simple. There are at least 120 strains of the spirochete in the U.S. and we are learning that each one interacts with the body differently. Then there are the common co-infections of Babesia, Bartonella and Ehrlichiosis, to name just a few. Each patient's physiology has it's own susceptibilities and unique immune system. The spirochete itself can hide in tissue inaccessible to our antibodies and to antibiotics. It also changes forms, making it harder to detect and treat.

So, there are at least three possibilities for why some patients end up with "Chronic Lyme" (I use the phrase here to mean that the patient continues to be symptomatic once having had Lyme and having been treated with antibiotics.) First, the spirochete may not have been eradicated. It may have gone into hiding once faced with antibiotics, but can re-emerge. Second, the infection may have triggered NAID. Third, the patient could be experiencing both.

Now back to my case. I am a case of "treatment failure" and am still suffering due to having contracted Lyme Disease. The recommended treatment to help with the CIPD is Intravenous Immunoglobulin (IvIg), a human blood-derived product. It is extraordinarily expensive and comes with risks. However, insurance companies deny any treatment beyond a few weeks of antibiotics for Lyme Disease. So, my doctors had to find a way around that.

The current plan is for my PCP to submit the CIPD diagnosis and to have the IvIg given as a prescription which will be administered at home after the initial treatment. (It's a 4-hour session, once per week, for 9 months to possibly years.) The doc had to search for a company that could administer the treatment and was 'in-network' for my insurance plan. They will not be told that I am/was a Lyme patient. I am now a CIPD patient. All paperwork will have to be submitted under that diagnosis. We'll know in the next couple of weeks whether this will cut through the insurance roadblocks to treatment.

Here's the thing that makes me nervous. I am still going to be receiving weekly injections of Bicillin to keep whatever spirochetes are in my body at bay. That is, I'm still seen as a Lyme case. I am consistently told, however, not to mention this, as it will trigger the insurance to reject coverage of any treatment. But, what if I have a reaction to the treatment that puts me in the hospital? What if I have another health problem (they just discovered an "odd" cyst on my kidney, for instance), where I would not be getting my injections or I would not know if there are possible complications to consider because of the Lyme in my body?

It's not just the insurance company I have to worry about. Doctors don't treat patients with chronic Lyme respectfully. Since they don't believe it exists (despite lots of studies demonstrating the persistence of the spirochete) they think the patient is a hypochondriac or some other kind of psychiatric case. Once a doctor has decided that about you, it clouds his judgment about acknowledging your suffering or need of treatment for anything. I simply don't feel safe in a hospital where I might encounter dismissive docs. That's not good. I shouldn't be afraid to go the hospital. (more on treatment failure, what's behind this a Lyme patient's fear of doctors and what all of us can do about it in my next entry.)

For now, I'm going to do all that I can to get this IvIg treatment. At worst, I won't tolerate it and we'll have to stop. If I can tolerate it, the very least I can expect is symptomatic relief for some of my peripheral neuropathies (burning/tingling/numbness in extremities and the shaking). This may not be permanent. It's different with each patient, from what I can tell. At best, it might arrest the auto-immune disorder raging in my body. If that is the cause of some of my symptoms, I may not see those symptoms re-emerge.

What's unknown, is which symptoms I have due to the autoimmune disorder and which, if any, are permanent damage from the Lyme or ongoing symptoms of active infection.

The hope is that with the earlier treatments of big doses of antibiotics, we beat the active infection back enough that the ongoing low-dose injections are keeping whoever remains in my system in hiding and inactive. If that's the case, I shouldn't see a worsening of symptoms once the autoimmune disorder is arrested.

Of course, how we'll know what's been arrested and what caused what is very unclear. Still, it's my only hope. If the autoimmune disorder caused the Dysautonomia then the IvIg treatment could restore my autonomic system to normal and my heartbeat, breathing, digesting and temperature control might start functioning correctly. That would be life-saving. So, it's worth it to me to find out.

** quoted phrases are from "An Approach to the Diagnosis and Treatment of "Chronic/Post-treatment Lyme Disease" by Amiram Katz, MD and Janet M. Berkley, RN (Department of Neurology, Yale University School of Medicine)

A Day(s) in the Lyme Life

Unaspenser — Wed, 13 May 2009 23:42:09 GMT

Lyme Awareness Month (Day 13)

Yesterday was a challenging day for me. It was probably less than a normal day for many. A few years ago, it might have been a wholly unremarkable day for me. Now, though, I experience things differently. Let's see if I can convey the difference:

My goal was to get up at 8am and get ready for work. Greg would delay his departure for work and give me a ride. The getting up part is always unpredictable. Will I be able to gain enough consciousness to push through the pain and force myself out of bed? Will I be able to walk down the stairs? Will I be able to focus enough to get dressed? The people around me have come to be patient about it, but it must be very annoying.

I was managing to stir when I was informed that a friend had called. She was on her way to pick me for an appointment at the hospital. Ugh. I had forgotten. System breakdown.

I use this handy web site called LotsaHelpingHands to keep my medical appointment calendar. It allows my friends to sign up for giving me rides. I can also post updates on how I'm doing there and it has a bunch of cool tools, such as a place to list all of your medications and your doctors, and a page where you can place links to resources related to your concerns. It's not the most smoothly designed site, but it's been invaluable. I don't have to get stressed about emailing and or calling all of my friends to see who can give me a ride every time I make an appointment. My friends can see that others are pitching in and sharing the load. Everyone seems to feel better about it.

Two glitches come into play, though. I need to train others about how to enter appointments. Sometimes, when I'm at an appointment, my chaperon will make the follow-up appointment. I have memory problems, so I don't always remember, after receiving the appointment card, to enter it into the system. Second, this calendar is only for my medical life, I now use Google calendar for everything else. This means that I have to enter medical appointments two places or I might overbook.

Both glitches were in effect yesterday. Well, at least I was getting up! So, off to the hospital for a CTscan. So far, not too bad. I call work to let them know I'll be later than expected. This was supposed to be a straightforward scan of my chest to follow up on a spot seen there last year. In and out in 45 minutes.

From the moment we walked into the hospital the stressors began. Bright flourescent lights and *so* much noise. And the smells. People should not be allowed to wear colognes to a hospital. We made it past the information desk and were escorted to the Radiology Department. I could feel my body caving in, getting smaller, pummeled by all the sensations. We turned the corner into the small room at the Radiology desk and there was a gaggle of kids. (Do they take field trips for group x-rays, now?!) They were screeching and running. At one point, there was such a blast that I visibly recoiled and yelped a bit. People were looking at me as though I were strange. One of the receptionists gently guided me to a quieter room.

Quiet is relative.. This room was jam packed, with a door that opened every 30 seconds, when someone would holler out a name, then let the squeaking behemoth slam shut. After about 10 minutes of this, I was ready to go home. I obediently waited for my name to pierce my head.

That obedience is a handicap. In retrospect, I can see that I've crossed into the realm of "flare" when I don't take action to protect myself. My nervous system is so overwhelmed that I don't have the judgment to make wise decisions or the ability to muster up directive action. This is why I don't go anywhere alone. I need a chaperon to protect me in these situations. Help me lower the stimulous or just get out.

My name was called. Likely, it was fairly quick. At this point, I had no sense of time. So, I followed a nurse back to another waiting room outside of the CTscan room. It was much more serene there. With any luck, the appointment was almost over.

I was called again and led into the room for the CTscan. I was given some sort of instructions and asked to lie down. The machine turned on. Then it turned off. Someone is asking me a question. She doesn't know that I can't really hear unless I can read lips. It's all muddled in the cacophany of sounds that is the world. Most of the time, I fake it. I hope that I can process enough syllables and consider the context and figure out what the person must have said. I answered something and it must not have made sense, because the nurse came over to me, backed the table I was on into the starting position and asked me some more questions.

She had noted that I was slated for a second CTscan. It had been scheduled for the day before, but I had to move the appointment because I wasn't able to arrange transportation. She was suggesting that I have both scans right now.

As I had a friend waiting and was supposed to go to work (and knew that I had my singing class later in the day) I was concerned that it wasn't a good time. Meanwhile, a phone call has come into the control room. I'm told my doctor has called and ordered the second scan to be done now. I ask to see my friend, who is waiting for me at the hospital entrance.

The nurse walks with me to find her. We go down another long hall of bright lights and noisy, odiferous people. My friend is sitting in the midst of a crowd at the entrance doors. It's a hectic setting. When I tell her what they want to do, she says, "I know. I called them to suggest it." She had said she would try to reschedule the second scan for me while I was getting this one, but I didn't expect this.

Here's the thing. The second scan was more involved. It required an iodine IV, which required lab work first. I didn't feel up to all that. I wanted out of the hospital. And I thought that my friend had to be somewhere. She did. So, she handed me money and told me that she had arranged for a cab to take me to work afterward. I was stunned and, yet, in my state of overwhelm, still obedient and submissive.

I was in the hospital for a couple more hours. I was by myself as I was shuttled to phlebotomy, then shuttled back to the loud waiting room, where I saw my friend for the last time that day. She left as I was re-escorted to the CTscan waiting area. Then I had to go into an office to have the IV installed. I was concerned about how my body would respond to the plastic being pushed into my skin and the adhesives. I slowly became more and more groggy. I vaguely remember hearing the explanation of what it was like to have iodine flushed through your system.

Still, I wasn't prepared. When they began to push the fluid in, it was very painful. A sharp, burning sensation. I was informed that this was my vein stretching because they had to use the biggest IV tube in order to push the most iodine in as rapidly as possible.

If you've ever had one of these scans, you know the routine of being rolled in and out of the big whirring circle with the voice that says, "Breath in. Hold your breath." I managed the process, but I was in an utter state of panic. The iodine creates an intense heat reaction that flushes your entire body for maybe half a minute. Not such a terrible thing, but my body doesn't manage temperature control well. It's part of the Dysautonomia. I was chilled to the bone for the rest of the day.

As I was laying there, I realized that my panic was intensified by the fact that this hospital is hostile to Lyme patients. They are the hospital that quite recently reported a doctor I was seeing for "over-treating" Lyme. She had sent three patients there to have PICC lines installed for intravenous antibiotics. A pretty standard approach to care for long-term Lyme sufferers. Well, standard by those doctors that can even be bothered to admit that Lyme can persist after a few weeks of antibiotic treatment. It's a longstanding medical battle. After they called the insurance company and the admin at her clinic, she was forced to stop taking Lyme patients. I got a simple emailing informing me that, though I needed treatment, she could not longer see me.

What I knew, as I lay there wondering how my body would handle the iodine and all the stimulus of the morning, was that I would not be taken seriously if I told them I had Lyme disease. This is a Lyme-denying operation and I was in the belly of the beast without a guardian. Not only did this mean that I wasn't completely forthcoming about my medical condition (I did answer all questions asked), it also meant that I would not receive care which took that condition into consideration.

As my arm started twtiching wildly and head started to have that creepy-crawly feeling and the pain in my feet flared up as though a gang of knife-wielding Lilliputians were attacking them, all I could do was work at keeping an internal voice alive telling me to "just stay quiet and get out as fast as I can." I'm in a hospital. As a person with a medical condition, this should be the one place I feel confident that things would be handled well if anything happened. Yet, I was scared out of my mind. (Said fear, of course, worsening the symptomatic reaction.)

I did get out. A cab took me to work, where I wasn't very useful. Then a friend drove me home and related the story of her day. One in which the horror of a past trauma had been evoked quite strongly. As she revealed her story to me, my experience seemed inconsequential.

You see, I'm aware of how ridiculous this all seems. I'm a woman who has traveled the world. Often alone. I backpacked around Brazil by myself. I went to the Maldive Islands and toured Sri Lanka by myself. I'm an adventurous soul by nature. I gave birth at home. I've faced off with powerful lawyers to protect a friend. I've laid down in front of construction equipment to stop an unjust action. I'm no wilting wallflower. Yet, I've become a canary in a coal mine.

I don't think I had a siezure yesterday. Though, it is possible I had one while getting the scans and just don't realize it. My emotional response to the experience was quelled upon empathizing with my friend's story. Still, my body is left with the impact. I went to singing class, because I had missed last week, but it was painful. The sounds of the voices were like squawking megaphones in my head. Standing hurt my feet and knees. Sitting hurt by rear end. All in all, I was downright grumpy.

Today, I'm very symptomatic. I won't be leaving the house until at least 6pm, so I can rest. Who knows how many days it will take for my body to calm down from yesterday's events. When you have Lyme, there is almost never a singular 'day in the life'. What seem like mundane experiences have multi-day impacts. You spend the next few days hoping to get enough rest and quiet to bring things down to bearable level of dysfunction so that you might actually be able to interact with others, or sheesh, maybe even accomplish something...

Lyme Awareness Month (Day 11)

Unaspenser — Tue, 12 May 2009 01:18:43 GMT

You Could Help Me Today

Simply vote for me by "adding your support" (scroll down to "Grassroots Supporters" and find the small text just below the section header.) Registration at the site is free. Here's why I'm seeking the scholarship:

In my quest for my own healthcare, I have been thrust into the Machiavellian world of money, politics and the medical industry. This is not someplace I ever wanted to be. Nor do I want anyone else to ever be in this position. Thus, I have become an advocate.

One piece of my advocacy work is to raise awareness among the online, grassroots, political organizing community. My home base for this is DailyKos. I'm a "lefty", so this is a natural place for me, though it's not for everyone. The work I'm doing around Lyme Disease is definitely non-partisan, however. So, as I ask for your support, I certainly hope you will consider what it is I am doing and not whether we are politically sympatico.

With two other people, I have launched a Lyme Disease Awareness program at DailyKos. We have begun to build a wiki web site (it's in very rough condition right now) so that our research and efforts can be documented and disseminated outside the confines of a politically biased community.

To broaden our outreach, I would do well to get some training in effective online activism. There is a yearly conference for this called Netroots Nation. My two cohorts and I are organizing a panel session on the need for political activism regarding Lyme Disease research and treatment. However, I can't go and help with the actual execution, nor can I get the grassroots training offered there, unless I can get a scholarship. My family is simply struggling too much financially for us to have the resources.

So, I'm out begging for votes. Will you please vote for me? I'd truly appreciate it.

Thank you!

Lyme Awareness Month (Day 6)

Unaspenser — Thu, 07 May 2009 11:47:01 GMT

Know Thy Enemy: Ticks

I'm finding, in conversations and online, that people have a lot of misinformation about ticks and how Lyme disease is acquired. So, let's start with the basics.

Ticks are in the arachnid family, along with spiders. There are many species of ticks. Many of us know that the Deer Tick transmits Lyme. Well, there are at least 8 species of tick that can transmit diseases to humans:

        Dermacentor variabilis - American Dog Tick
     Ornithodoros - Soft Ticks
     Ixodes Pacificus -Western Black Legged Tick
     Ixodes Scapularis - Deer Tick
     Rhipicephalus Sanguineus - Brown Dog Tick
     Dermacentor Andersoni - Rocky Mtn Wood Tick
     Amblyomma Americanum - Lone Star Tick
     Dermacentor Occidentali - Pacific Coast Tick

Some of the diseases they can transmit.

     Borrelia Burgorferi (Lyme Disease)
     Rocky Mountain Spotted Fever
     Tularemia
     Ehrlichia
     Q Fever
     Tick Paralysis
     Borrelia lonestari (similar to Lyme)
     Colorado Tick Fever
     Babesia'
     Bartonella
     tick Relapsing Fever

Most ticks can transmit more than one of these diseases. In fact, often, people are infected with more than one and his is why diagnosis and treatment can be so complex.

While ticks prefer moist climates, they are now found in all 50 states and are spreading throughout the world.

Ticks generally staying a 3 feet or less from the ground, unless they have hitched a ride with a bird. Which brings us to our next point: ticks don't acquire these bio-organisms from deer. Deer are merely the host of choice for one species in it's adult phase.

Ticks acquire these diseases from the many smaller animals they latch onto in the nymphal stage, such as:

     squirrels
     mice
     lizards
     rabbits
     robins
     starlings

Look at that list. Those are animals we see around us all the time. These are the favorite hosts of ticks in the nymph stage, which is the predominant time that humans are bitten by ticks. The nymphs of the Deer Tick are about the size of a poppy seed. Or a very small freckle.

The ticks are equipped with interesting features which make it more difficult for us to detect when they've bitten us. They secrete an anasthetic in their salive to numb the bite wound. They also produce a kind of biological glue that keeps them attached to their host. So, once they've bitten they don't move around, making it less likely we'll notice them.

It's important to learn about ticks so that you can identify them and understand their potential for harm. Don't be lulled into a false sense of tick-security just because you think it's not a Deer Tick.

A few other things to note:

     over 50% of patients with Lyme never saw a rash
     fewer than 50% of patients with Lyme recall being bitten
     the CDC notes that Lyme is a clinical diagnosis, not based on lab tests
     the ELISA screening test has a 35% false negative rate (that is, 35% of those who receive a negative result, actually have Lyme)
     a screening test should have a 95% sensitivity

Know these facts and more to identify when you might be at risk for Lyme or other tick-borne diseases. This could be based on knowing you've been bitten or on symptoms. If you know you've been bitten, insist on a course of antibiotics. Make sure your doctor knows how unreliable the tests are and that a course of anitbiotics is well worth the prevention of advanced Lyme Disease.

Here a few resources to help you learn more:

Columbia Lyme and Tick-Borne Disease Research Center
International Lyme and Associated Diseases Society
California Lyme Disease Association

Lyme Awareness Month (Day 5)

Unaspenser — Wed, 06 May 2009 01:41:58 GMT

Spacey.

This will likely be short. Today, I am spacey. This often happens after a day of output. Beyond the doctors appointment, I helped author and field questions about a Lyme Awareness piece on DailyKos.com. I'm really enjoying the collaborative effort of that work. There are three of us putting together informational pieces for every Monday, Wednesday and Friday in May. The teamwork is great. We're recruiting some great 'guest' authors (Amy Tan, Kris Newby, Pamela Weintraub...) I feel very good about the work.

I also feel drained by it. You wouldn't think sitting at the computer could do that to you. But, with Lyme mental output can be just as draining as physical or emotional. The sensory system gets so damaged that the body really wants to reserve every ounce of energy for stasis. When you output for something else you trigger what are called flares. That is, your symptoms flare more than usual. Flares can range in intensity.

Today, I can't muster any forward energy at all. (I've been writing this little piece off and on for hours. Usually, I can sit down and whip out thousands of words in 20 minutes or so.) It's this strange experience where I know that I'm supposed to be doing something. I may have even been doing it ten seconds ago, yet I drift away from what I'm doing without even realizing it. Time goes by. Sometimes minutes. Sometimes hours. Then I have this recollection that I was doing something. I'm lucky if I remember what it was. I'm lucky if I recall whether or not I started it or completed it. I simply have no sense of where the time went or what I did with it. I'm just wandering a haze. A complacent haze. It's not as though I've stressed to be in that haze. (That only happens with siezures.) It's as though I've been anesthetized from having any emotion about time or productivity or purpose.

If I recognize that I'm drifting, I may consider trying to get out of it, then I feel a bodily resistance. No, that's not right. It's more that I can't find any reserve of energy to shift gears. My brain almost can't even summon up the concept. Even if it could, my body would respond to any signals with a "we don't speak that language, please translate. The only language we speak is one of inertia."

Today has been like that. Getting dressed was a multi-session, multi-hour task. (Not sure if I've actually completed it.) It's 2:30pm and I think I've been awake since about 9am, but I'm not sure I've actually done a single thing other than typing this and responding to an email.

I'm vaguely aware of physical symptoms today: a creepy-crawly feeling in my head. Burning feet, shins, knees. Tingling in my hands. Ache down my left arm. Knees feel swollen. Hips ache. Hands trembling. Head wobbling on neck. The ears. Oh, the ears....

My phone will remind to meet my daughter at her bus. And any other scheduled tasks that I have. Other than that, today will be a loss. Welcome to what Lymies call The Fog.

Lyme Awareness Month (Day 4)

Unaspenser — Tue, 05 May 2009 04:48:56 GMT

I'll take a break from describing symptoms today. Lyme Awareness is about so much more. I had a doctor's appointment, so I'll walk you through that to get a sense of what it's like navigating the medical system as a Lyme patient.

My appointment was with my Primary Care Practitioner (PCP). Today was one of the better experiences I have had in the last 3+ years. The best are with my very Lyme-experienced neurologist in CT (we'll call him Dr. CtNeuro), but he's not "in network" and must be paid out of pocket. Let's say that today was one of the better in-network appointments.

Recently, I went to New York City (thanks to the brilliant generosity of my fellow DailyKos community members) for some neurological testing. There I was told that the Lyme had now affected my autonomic nervous system (heartbeat, breathing, digestion, body temp control, etc.) I have now acquired Dysautonomia. A fancy way of saying that the autonomic system isn't functioning correctly. It might be obvious, but Dysautonomia is dangerous. I's kind of important to have our heart beat regularly! While not a cure, the recommended treatment is intravenous immunoglobulin (IViG). What was explained to me is that it can help with neurological damage and provide the immune system with some relief. If I can get the treatment, I am likely to see some good symptomatic improvement, for a while. It won't be permanent. At this point, any relief sounds like a miracle, though. I'll take it.

Ah, but there's a catch. It's extraordinarily expensive. I'm going to need at least 9 months of treatment. Could be years. Price tag: $15,000 to $20,000 per month. Yes, those are thousands. Per month.

Clearly, this is not going to happen without getting it covered by insurance. So, here we go into the insurance abyss.

I was sent for a consult to Dr. NYC by Dr. CtNeuro. CtNeuro, as mentioned before, is not in-network. Therefore, not only are his bills not covered, anyone he refers would not be covered, either. Nor would anything they recommend.

So, my goal with the PCP today was to convince her to help me figure out how to get the IViG treatment covered. Can she retroactively refer me to Dr. NYC for a consult? Can she just make a diagnosis based on the test results if he sends them to her? If, one way or another, she can verify the diagnosis, can her office administer the IViG per Dr. CtNeuro's instructions? Or could she refer me to someone else in-network that would?

Dr. PCP couldn't give me answers today. What went better than I usually experience is that she was open to figuring it out. She had a little more understanding of the difficulties Lyme patients are facing than she had before. (I haven't seen her in nearly 1.5 years, because she assumed I was being taken care of by Dr. CtNeuro. In that time, she's had more exposure to the issues.) I offered a little more of the medico/political background, the name of a good book and info about the screening of a documentary to further her education.

The plan is for her to talk to both Dr. NYC and Dr. CtNeuro. She can then gain enough info to defend the need for the treatment to the insurance company. She confirmed that using the Dysautonomia diagnosis was probably the only way to get the IViG treatment. (Insurance companies are using guidelines from a proven-to-be-corrupted panel of docs in order to deny any treatment for Lyme other than a few weeks of antibiotics.) Once she feels she's in a good enough position to do that, she'll ask both the docs if they know of an appropriate practitioner near here to administer the IViG. She will also look into whether her clinic is willing to go through the process to be set up for administering IViG themselves.

So, okay, she'll look into it. She's willing to do the work. It may take some time, but we may actually figure this out.

While this process is convoluted, it may seem like a rather normal experience to you. The normality of it, the laizzes-faire reasonableness and responsiveness, was exactly what made it so different for me. You see, it took two years to even get a diagnosis. In that time, I was told I was just stressed. I was tested for MS, Fibromyalgia, Lupus and many other things. Upon learning that the Lyme test they used has as high as a 50% false negative rate, I asked for more testing and was told, "we already did that. You don't have Lyme." As my symptoms worsened and I began reporting these alarming bouts of profound confusion, I was told that I was having a psychiatric breakdown. That I need psychiatric treatment. Those bouts of profound confusion turned out be partial complex seizures.

After going to Dr. CtNeuro and getting more testing done and finding that, indeed, I was positive for Lyme, one of the docs back here told me that I had "just been diagnosed with something that doesn't exist."

Now my tests are so definitive that no one will deny I have Lyme. It's just that the insurance company won't cover any treatment. Docs have a heavy load. The last thing they want to deal with is wrangling with insurance companies. in the year and a half since I finally got my diagnosis, this is the first time someone has been willing to try and work the system for me. I'm almost too stunned to think it was real.

In reality, there is a growing voice for Lyme awareness in the public dialog. The CDC says that while 20,000 new cases of Lyme are being reported each year, they're pretty sure it's under-reported ten-fold. That is, it is more likely that there are 200,000 new cases per year. There is no other disease spreading at anywhere near that rate. It's the quietest epidemic ever. But, with that many sufferers and the way those sufferers are treated, we may just have reached a critical mass. Until recently, the silence had been deafening. But today's appointment tells me that the sound is finally being turned up. And, perhaps, just perhaps, for the first time in three and half year, I can have a little hope.

Lyme Awareness Month (Day 3)

Unaspenser — Sun, 03 May 2009 22:58:09 GMT

A Lymie Morn

Usually, i have an epic dream life. When I can recall my dreams, they are vivid, full of fun surreaiism and symbolism. They go on and on and on. When I've told my dreams to others, they are usually stunned by the depth and length. Used to be, I could wake up every single day recalling my dreams.

Now I struggle to hang on to them. I'm lucky if I can cling to a kernel. My body is too distracting.

This morning, I awoke to notice my feet again. I am in the fetal position. Tightly bunched. I used to sleep so relaxed. Wake up feeling so refreshed. I loved sleep. Best. Sleeper. Ever. Ask anyone who knew me then. Now, sleep feels like a passive, aggressive lover. You're drawn to and it seems like such a good thing, but it's really sucking you into a destructive script. I'm "awake" but not revived. The waking process is a long slow one. It's a while before I even open my eyes. If I can even see normally, the light will hurt. My neck and the base of my head will throb with ache once I open my eyes. So, before that, my body demands an accounting. A sense of whether I might have a "good" day, an average day or a "don't bother getting out of bed day."

Burning. Burning up to my knees. Toes aching before I even move them. A wiggle, a sharp pain. Walking will be torture today. The next thing that commands my attention are my ears. There are multiple layers of things happening in my ears. First, the exterior of the ear I was laying on hurts like the dickens. It feels like someone smacked it with a baseball bat. It will take a while for that to diminish. Then I won't notice it until I talk on the phone. Touching the phone to my ear hurts. That's the the exterior sensation.

Perhaps the single most draining symptom I have has to do with the ears. I have multiple tones of very loud ringing. Constantly. Incessantly. It. Never. Stops. They are pulsing, high-pitched tones. I'd call them screams, but the pitches are so high and so clear that they sound more electronic than human. Additionally, I now have super-sensitive hearing. Which, ironically, makes it hard for me to hear. Well, hard to focus on any one stream of sound. This is a tough one to explain and my Primary Care Practitioner (PCP) really doesn't get it. I'll see if I can capture it.

When I awake, I can hear the breathing of my dog, as though a stiff wind is blowing through the house. A car driving down the road two blocks away sounds like the Indianapolis 500 has moved to my living room. The once sweet sound of birds chirping in the yard outside the windows are screeching, as though a massive panic has set into the bird kingdom and they're sounding the smoke alarms to warn me of some impending doom. Every morning the decibel level of the world is shocking to me. I have to brace myself for it. But then I've had to attempt to not 'brace', as that leads to other pains resulting from the stress of having my muscles so tense. It's the ultimate zen practice, of which I clearly haven't had enough, because every day, I lose the battle to stay relaxed in the wake of this aural assault. The whirring of electronics. The tsunami of air systems. It's a constant cacophony. At some point every day, my body caves in to the onslaught.

What is particularly odd about the hearing issues, is that the only thing that brings any abatement to the incoming fire is when I produce sound myself. I've always been chatty. Now, there's an urgency to my need to talk. Diarrhea of the mouth doesn't begin to capture it. It's not just a flow of words, its a strident need to talk. It took me a long time to understand this. To make the connection. It's not just that I crave the social interaction. It really hit home a few weeks ago, when I was at chorus practice. (Yes, I'm trying to sing again. It's this drive in me to not let this disease take everything away. But it takes its toll. Singing in a group is noisy. Getting there and back is tiring. The building has lighting and smells that strike me.... Still, singing is praying twice. I need to sing.)

A few weeks ago, I knew upon entering the building for rehearsal that I was already beyond my limit for the day. I was barely hanging on. We weren't in our normal practice room, where the sound is lovely, softer than other places. We were in the Library of the music building. It was small. There was a strong perfume. I was struggling to maintain my brain/body connection. I knew that a seizure was possible. I hadn't had one in a while, but I could feel the confusion setting in. The shaking. Actually, I had thought one might happen any minute. Indeed, it did happen at the end of rehearsal. But what I experienced in between was curious. When I was singing, my mind would clear. I would regain a strong sense of being present. As soon as we would break, I would feel the confusion hit ("where am I?", "who are these people?"...) My hands were trembling. I was wobbly. As soon as I started singing, I would be jolted into clarity. I made it through the rehearsal, but once we stopped singing, in a matter of moments, the confusion hit me at that profound level. I couldn't understand words, could barely hear the sounds around me, didn't recognize people, didn't know what I was doing, couldn't fathom what to do with my body.

I had felt it coming on. it had been a long day. Walking through life as though a maximum-volume heavy metal concert is following you around all day, just wears me out. What amazed me, was how strikingly different it was when I was singing. Whilst singing, i don't feel assaulted by sounds. It's as though the production of sound myself is the emanation of a protective barrier. i clearly understood then, why I'm not talking so much. All. The. Time. I'm very self-conscious of it. I feel rude. I don't like to think that I'm self-centered. I don't want people to think I don't care about what they have to say. It's a physically defensive act, of which I wasn't so aware until now.

At the same time, I have had to learn to lip read. All sounds are received so loudly, that I have trouble filtering and clearly hearing the stream of one sound. When in conversation, I need to look at the person speaking. I have to gather a lot of energy to focus. I, often, can't really "hear" what is being said, so much as I read lips and my brain works to decipher the pieces and puzze together something that fits the context of the conversation. In reality, I misunderstand a lot. Add this to the short-term memory problems, and I'm a horrible friend who can't recall what you've said half the time and has to have you repeat things. Or responds in some odd non-sequitor that completely confuses you. Well, at least in confusion, we're connected!

So, each morning's awakening has to have a period of time where I come to terms with sounds. And the pains that the sounds create. Because not only is the world incredibly loud, many of the sounds cause sharp pains in my ears. It's like having a little elf in my ears who is running round with pins and pricking at random. He's a dark, little impish elf. Not some jolly little guy brightening my days with smiles and jokes.

You know, I think I'll leave off here this morning. I won't go into the morning hip pain, that my ankles feel like they've been broadsided. I'll save the descriptions of what goes on in my abdomen and my chest. The litany is simply too long for a single session. Right now, I have to get ready for the arrival of my knitting group. And I'm teaching today. I'm never really ready. There's simply no way to be ready. In some ways, life would be easier if I didn't do this. But, as with the singing, I need it. I simply can't Lyme take this completely away from me. I may not be able to do it full time any more. But I can push through 3 hours a week and get the benefit of the connection to my fiber friends and the healing that is knitting.

Until tomorrow....

Lyme Awareness Month (Day 2)

Unaspenser — Sun, 03 May 2009 09:13:41 GMT

I had written that I wouldn't write about the daily travails of living with Lyme disease, but it's May. May is Lyme Awareness Month. As I've often been prompted to document more of the minutae of my experience, I've decided I'll make an exception to my self-proclaimed rule for one month. Perhaps it will be enlightening. If it helps one person recognize that she has Lyme or gives one other Lyme patient some solace in the realization that he's not alone, I suppose it will be worth it.

It's late this evening and I already can't recall my morning. Likely, I slept late. I've been sleeping a lot lately. Wednesday, I crashed around 5:30. Was up for about an hour to an hour and a half in the late evening and then slept again until about 11am Thursday. Profound exhaustion is par for the course.

Today, I've been predominantly experiencing arthritic-type pains. it's strange how the symptoms cycle. Different days different ones will dominate. Today, all of my joints ache. I'm walking, albeit it slowly. My daughter marched on stilts in a parade today and I joined for the last 1/4 of it. She went with her father to another social event. I then walked back to the car. By the time I was there I wanted to cry from the pain. I don't like her to see that. I've gotten quite skilled at putting a smile on when my body is wracked. It's not fair to her to have her joyful moments clouded over by my health. Still, she notices. She's acutely aware of when my hands are shaking, for instance.

I've become very aware of how many joints I have. For some reason, I note them from the toes up. The pain in my feet is always the first thing I realize in the morning. Every morning I am surprised that, yet again, the tops of my feet are burning and there are sharp pains shooting across the bottoms of my feet. Did you do that strange activity when you were a kid, where you would grab someone's forearm with your bare hands and then twist the hands in opposite directions? Remember the burning sensation? My feet feel like that all the time. On an average day, I feel it up my shins and I feel it on the backs of my upper arms. On hot days, the skin over my entire body feels like that. It's sheer torture. I've yet to find anything that soothes it.

Since today is an arthritic day, I'll stick to describing that. I'm sure there will be other days to write about other symptoms. As though the arthritic stuff weren't enough. (You see, this is why I don't like to write about it. I feel like a whiner. And it's better when I focus outward. Take my mind off of it. Though, it takes energy to ignore pain. I can only last a few hours each day before I succumb to it.) Okay, joints.

My toes ache when I'm sitting or lying down. They feel cramped. I half expect to look down and see them curled up tightly under my feet. Or for them to be swollen. But they look normal. It's when I put weight on them that I really know something is wrong. After just a few moments of walking, it feels like someone has taken a sharp blade and slashed all the way across the area where my toes meet the balls of my feet, from underneath. I get the same sharp sliced feeling as though someone has cut the tendon in my arch. It's excruciating. Early on, when i would feel this, it would stop me from walking. It was partly the shock of it. For a while, I tried crutches, but they didn't help. Once the pain starts, its there for the day. Now, I know that it's not structural pain. As in, I can't do further damage by walking. So, I push through it and walk anyway. Well, for as long as I can.

My ankles, knees and hips don't have the same sharpness to them. They ache, but it more like a throbbing stiffness. Though I am committed to stretching and can still touch my toes, it seems as though my joints should just split right open if I use them. Like a brittle branch that can't bear any pressure and just snaps when the wind is too strong. Of course, nothing has snapped. Still, on days like today, its very slow going, as every movement feels monumental.

Perhaps one of the saddest losses in all of this is the result of my fingers hurting so much. I can only knit for a few minutes before I can't take it any longer. Knitting has been a defining part of my life. I have a business around it, but more than that it's a creative outlet. I design. I have hundreds of design ideas in my head. I've never been able to knit fast enough to produce them. Now I don't produce them at all. Its simply too painful.

Speaking of painful, the arthritic fingers are struggling to type this evening. So, I'm going to call the end of this writing session. I don't think I'll use all of my month long diaries to simply document symptoms. I simply don't feel that I can be motivated for that. I'll try to write some of that and blend it with other informational stuff about Lyme: studies, resources, legislations, etc.

And perhaps, I'll even fit some vampire writing in. I have several thought streams on that which I haven't gotten to, yet. We'll see how the month goes. So, until tomorrow....

Lyme: The Medical Morass

Unaspenser — Mon, 02 Mar 2009 10:39:19 GMT

There is a lot of misinformation out there about Lyme, as there is for just about anything. It ranges from denial that Lyme exists to conspiracy theories about Lyme having been developed by the government as a bio-weapon and released in unsuspecting civilian environments as part of the testing. (Yeah, crazy can stretch in myriad directions.) Still, there are serious controversies in the medical world about Lyme. Some arise from legitimate difficulties in sorting it out because Lyme is a sophisticated and stealthy little bugger making it challenging to nail down. Unfortunately, not all the controversy is that innocent. Because this more nefarious action has had such a profound impact on Lyme patients and their doctors and sets the stage for discussing anything else about Lyme, I thought I'd lay a little medico/political context.

One of the challenges in my medical care has been delayed diagnosis due to flawed testing practices, as well as, the fact that insurance won't cover the treatment of Lyme Disease beyond a few weeks of antibiotics. This is due to the fact that the CDC allows independent medical associations to heavily influence their guidelines about how to define, test for and treat a disease. In the case of Lyme Disease, they have, for decades now, looked to a group in Connecticut called the Infectious Disease Society of America (IDSA). The IDSA has a well-regarded division that has lobbied for HIV treatments for many years and it is situated in Connecticut (ground zero for Lyme in the United States) so, it seemed like the perfect organization to take the lead on this mysterious disease.

Yet, for decades, this organization's views on Lyme have been controversial. They have persistently claimed that Lyme is a readily treatable disease, requiring only 2 weeks of antibiotics. Though hundreds of thousands of patients have had Lyme symptoms recur after treatment, they have continued to deny that it could be Lyme. Patients sitting in doctor's offices with palsied hands, serious cognitive dysfunction, unable to walk have been told that it's all in their head. There have been plenty of other doctors in the field arguing that the IDSA guidelines were extremely flawed. But the IDSA held the influence with the CDC and the insurance industry. Doctors who have tried to treat their patients have had their practices shut down. Patients have continued to suffer.

One can easily see why the insurance industry would embrace a very limited, low-cost treatment for Lyme. And why they would embrace testing that had a 35% false negative rate. (That is, 35% of the time when the test said the patient didn't have Lyme, she actually did.) All of this reduces the amount of money they have to outlay for treatment and testing. (I was told for two years that I could not have further Lyme tests because I have to test positive on that gate-keeping test, the flawed one, in order to qualify.) What wasn't clear was why these doctors on this board would suppress information coming out of medical studies and clinical practices. Why would they deny patients the critical care that they need?

In May of 2008, the answer was made public: it was money. In 2006, despite tons of evidence that Lyme patients are not being cured of Lyme and that they are experiencing debilitating symptoms that profoundly impact their lives, the ISDA put out, yet another set of guidelines claiming that Lyme was not chronic and could be cured with a 2-week course of antibiotics. For the first time in our history, the existence of overwhelming evidence to refute these guidelines was brought to an Attorney General's office and that Attorney General launched an investigation. Never before has a medical association been subject to an anti-trust investigation.

The investigation was launched in 2006 and on May 1 of 2008

"Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter."

What kind of conflicts of interest? Blumenthal later explains:

"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion. In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards."

That's right. It turns out that the majority of the board members on the IDSA Guidelines committee had conflicts of interest and were suppressing information that diverged from their interests. They were patenting their own test kits and consulting to the very insurance industry they were a part of regulating. Frankly, I'm not sure why they aren't considered criminal.

The guidelines are currently in a review process. At first when I heard this news, I had great hopes that we would see big shifts in how the medical industry sees and treats Lyme. However, the very people who were removed from the board due to conflicts of interests have argued that any doctor who has treated Lyme patients has a conflict of interest, as well. As it turns out, many of the studies done around Lyme have been performed by doctors who have had Lyme patients. That's generally how it works in the medical field. Doctor's become interested in a topic they are addressing with patients and for which they can't find enough information. So, these folks, who still have the same financial interests they did while on the committee have turned the screw and found another way to make sure that divergent data is not considered. It's not yet clear what this means for the process or the future of Lyme patients.

What has happened though, is that information from these studies is making it's way to the public. The likely outcome is that new organizations will be formed. I hear there is an endowment for a Lyme Registry which would track Lyme cases and data regarding Lyme in Connecticut at the official hospital for the Governor. Again, I'm not sure what this means in terms of influencing the CDC and the insurance industry. We know that the insurance industry is a powerful lobby with a vested interest in minimizing what they have to pay for Lyme treatment. One can only hope that last year's findings by the Attorney General will open the flow of information and start to open some eyes. I know from personal experience, how difficult it can be to reverse the impact of misinformation to doctors. (I've been told I need a psychiatric workup because I was clearly having a breakdown by one doctor; and after finally getting further testing which proved I did have Lyme another doctor told me I had been diagnosed with something that doesn't exist. Neither of them want to hear that they were wrong.) I imagine that there are complex considerations and emotions for doctors who have already seen and treated, or not treated, patients for Lyme based on the IDSA guidelines. Still, given that Lyme is now seen as an epidemic and that they think unreported cases are 10-fold the number of reported cases, it is critical that we get doctors to shift gears, see this disease for what it is and help patients get the care and support they need.

'Pressions

Unaspenser — Fri, 27 Feb 2009 02:27:15 GMT

As I wend my way through life with a debilitating disease, I clearly face emotional waves, as well as, physical ones. This past Fall, I realized I was suffering from depression. Not something I've been prone to in the past. I've generally had a resilient emotional makeup, girded by a mysterious underpinning of some undefinable kind of faith. Faith that experiencing life is, in the overall, good. Faith that "The Universe Provides", for lack of any more definitive understanding of this amorphous, yet powerful, force in my life.

So, it was alien to recognize depression. To identify that I wasn't connected to that faith, that my thoughts were dominated by the question, "why bother?" Apparently, it's a natural response to being ill for so long. Once I recognized it, I was able to take a few steps to pull me up out of it a bit. Exercise helped, I think, even though it came with strong physical setbacks. I'll take physical discomfort over emotional dysfunction any day.

Reaching out to friends and admitting I was depressed was a big help, also. First, it reminded me that I had friends. These days I don't feel worthy of my friends. That is, I feel like so much more of a taker than a giver, that I'm sure I'm a burden. Also, my life is so limited, I'm certain that I'm boring. These are harsh realities to live with. Still, I do have friends. Dear friends. They are good to me. So patient. So kind. So comforting. Perhaps I wouldn't have realized such friendships without having my strength compromised by illness.

Talking to friends and recognizing how much support I need, but am uncomfortable asking for, led to the discovery of a web tool for people managing serious health issues and needing community support. It's called Lotsa Helping Hands. It's not the most well-designed site. It's clunky, but it provides a great service. I can enter upcoming appointments and support needs on a calendar and my friends can sign up for tasks. The shift from having one person drive me every Monday for my injection to having 15 people sharing that task is wonderful. I don't feel like such a burden. Unless someone knows of a better tool, I highly recommend using this when you or someone you know is in need. There are other tools on the site, such as a gathering of important information so that anyone in your support network has it when needed. And a message board where you can update all the friends and family in one private place.

Okay, so I got a little help with depression. Ongoing awareness, meditation and a return to exercise will, hopefully, keep that at bay. But there are other '-pressions' to contend with. Look at this list of words that include 'pression':

(list gotten from a neat little web site called Word Navigator.)

Somehow all of those words now have a more prominent place in my life. I find it interesting that along with immunosuppression and depression there is expression. I would definitely say that I have found more outlets for expression since becoming ill. Perhaps, being suppressed from action simply triggers a balancing effect of increased expression.

Am I now in postdepression? In many ways my life is decompressed. Though at the same time, I feel oppressed. Today, oppression is what I am most aware of. Certainly, I feel oppressed by this disease. It definitely keeps me in a place. My energy levels are just nowhere near what they used to be. Though I have desires to get a lot done, I'm constantly thwarted by the damage being done to my body. I simply hit walls and am stopped dead in my tracks.

Not having energy means that I'm not able to stave off things as well as I'd like. We all have our personal styles and quirks and we have to learn how to manage a balance between our preferences and those around us in order to have a peaceful life. Keeping that balance requires energy. When you don't have the energy and the balance gets tilted away from your preferences, things aren't just mildly annoying any more. They are oppressive.

One of the things I find oppressive is clutter. Stuff everywhere. I can't stand it. I find it distracting to have disorder. I don't like junk. if things aren't highly functional or beautiful or symbolic or purposefully whimsical, I feel them taking up space, draining energy from the surrounding area. When at the top of my game, I proactively manage that. I throw things away. Re-organize spaces. Whatever it takes to control the chaos and bring me peace. I'm clearly not at the top of my game.

I don't have the energy and I live with people who simply don't care. They are quite comfortable covering every surface of the house with bits and pieces of random things. Shreds of papers. Parts of toys. A few nails. The lid to some tube. The plastic film from a container. No matter how many times I try to set up systems which create a place for everything, they don't use them. I've given up cleaning because within hours, minutes sometimes, the work is undone. I don't have the energy to waste. I could spend all my waking time just cleaning up after everyone.

This is a style question. Clearly, some people don't mind this kind of chaos. Some people aren't built for efficiency in that way. Simple things like wiping up the counters as you prepare food. Or thinking about the longer-term ramifications of where you decide to put something. Cleaning the shower while you're in it. I know that I'm not in the majority when it comes to this. At my best, I'm an efficiency queen. At my best, I can, somewhat, counter the forces around me. I'm not at my best. And while mildly entertaining conversations might occur about the style differences, what isn't recognized or honored is that I feel oppressed. Completely oppressed. I literally feel all this stuff pressing down on my consciousness. It all screams for attention. So, I just walk away. I hide in my own space. (which is not exactly in the Zen-like state of orderliness that I would like, either, but that's more of a financial problem than a functioning one.)

The attention i want to give it is to throw it all away. I want clear space. i wish I had the funds to hire a good, hands on, home organzing consultant to come in for a period of several weeks and help clear out and re-organize. (this would reqire funds not just for the person, but the furnishings, as well. One challenge in this house is the lack of closets and the fact that it is nearly impossible to mount anything on the old plaster and lath walls.) My sweet little house feels like an iconic symbol of White Trash. Broken items on the front porch, in the back yard, on the kitchen counters. Things on shelves that haven't been touched for ten years. Overflowing shelves. When I throw things out, they reappear. I live with people who get "attached" and can't bear to throw anything away. When I move things so that a cord is not running across the middle of the main thoroughfare in the house, for instance, they move back into even worse placement. It's as though all this stuff is stalking me. Like poltergeists which can't be exorcised. Here to haunt me until the end of my days. An end which I am sure will be sooner than otherwise because of how much life they are draining out of this house.

That's what it feels like. Like I am being haunted. Invaded. Unable to create the peaceful beauty I would like in my home. Energy here is simply bouncing off of all these things. Careening from place to place to person to person. You can't create flow. I walk into it, feel the oppression, turn and walk away. I simply don't have the enormous energy it takes to stave off this kind of assault. So, I disengage. Is that depression? Immonsuppression leaves you susceptible to oppression resulting in depression. It seems all I have left is expression.

Not that it will affect much. I've pretty much realized that I'm living with people hard-wired for chaos. It's not about being too busy. Being too busy is exactly why I crave and would maintain order. It's when you're busy, overwhelmed, that you need that efficiency even more. You make life exponentially worse when simple tasks are burdened by dysfunction. The upfront investment in organizing and the ongoing commitment to order and cleanliness are always worth it. But some people can't hold on to that consciousness. Their inner drivers are different. They simply don't care enough to maintain it. They are able to drive right through all the choas (though they leave a trail of further chaos behind) and don't even seem to notice. Perhaps that's a virtue. I don't experience it that way. It may have it's momentary advantage, but the long-term damage outweighs that. The constant degradation of basic functioning. The deteriotion of the things around you. The resulting greyness. Everything becomes dim.

I don't have a resolution to my situation. Unless I can earn a decent living, I'm disempowered. And that's the nature of things, isn't it? Why it's so hard to be disabled. You lose power. Power over even the simple things such as keeping your house clean and organized. So, beyond the emotions of feeling guilty that I can't provide for myself, the self-worth issues that come with that. I can add the humiliation of feeling embarrassed about the state of my home. I simply can't keep pouring my limited energy into the black hole of chaos that swirls around me. I feel so helpless. For that, I am ashamed. I'm not sure what 'pression' that is.

But You Look So Good!

Unaspenser — Fri, 23 Jan 2009 07:44:20 GMT

In another community, I was asked to write a piece on some of the emotional complexities of living with an invisible disease. I thought I'd share it here:

"It is better to feeeel good than to looook good!"

That was the quote from Billy Crystal's imitation of Ricardo Montalban on Saturday Night Live. In the 1980s it became a cultural catch phrase. I remember tossing it out quite often. I think of it frequently now, as I live with an invisible disease: Persistent Neuro-Psychiatric Lyme, along with Arthritic Lyme and Polyneuropathic Lyme). The line is evoked every time someone says to me, "But you look great!"

So, is it better to look good than to feel good? Of course we all know that the answer is no. Feeling good, as in healthy, is far more important that looking good. Still, it is emotionally complex to be experiencing pain, memory loss, cognitive dysfunction, exhaustion and a serious degradation in your ability to function when the cause of all this is hidden behind a normal looking veneer.

On the one hand, I am no stranger to a certain amount of vanity. I'm glad that I haven't acquired any deformities or visually obvious signs of illness. When I'm not feeling too badly, it's nice to be able to appear normal in social settings. It allows me to have experiences where my physical health is not front and center in my interactions with others. There are time when I can even pretend that I'm not sick and have a little vacation. No one is more sick of me being sick than me. So, opportunities to let that fade into the background, even if just for an hour or so, are very welcome.

Let's face it. It feels good when someone tells you you look good. As much as we try to deny that it is important, feeling attractive supports one's self-esteem. So, when your self-esteem has been whittled away by disease, it's great to get a dose of esteem-building compliments, if they're genuine.

Yet, I also experience times when I wish that I had a palsy in one side of my face or that the twitches and shaking I have were far more violent. Some obvious sign that I'm not normal. Not for sympathy, but for the adjustment of expectations. It's hard get people to really absorb the fact that you can't do all the things a healthy person would do when you generally look okay on the surface. Then again, I don't want to be written off as useless and lacking value as a friend. You see. It's complex.

Those who know me can visually assess, to some degree, how I'm doing. My hands are more shaky. There's a small twitch under my eye. My head bobs. I'm rubbing my hands as some sort of placebo-type action to smooth out the tingling/burning sensations in my hands and arms. I'm moving my legs a lot in reaction to the burning and sharp pains in my feet. The stress from experiencing the world as a constant heavy-metal cacophony due to hyper-acusis, shows on my face. I'm asking a lot more questions than usual because I can't recall anything or process information. If you don't know me, you might not notice, though. So, when I sit at a meeting at my daughter's school, looking normal, it's hard for people to understand why I can't volunteer more, or why I'm always forgetting things. Two weeks ago, I sat next to another mother at a school assembly. When I asked if she wanted to have lunch she said she had to get back to work. She commented on my more flexible schedule and said, "You're so lucky." There is no positive reason to respond to that. I simply sit with my myriad feelings about it. Those feelings range from loneliness to self-degradation to gratefulness.

It's lonely to have your experience in this life so unseen. Sure, I might look normal on the surface, but if people really connected to one another they can, through empathy, feel when someone is not well. Empathy is not a cultural norm here in the good ole U.S. of A. (Though, perhaps, our new president who embodies the concept of Servant Leadership might augur in a bit more of it. We'll see.) Being empathetic can be hard. It takes a lot of practice to be able to sense what others are feeling without being overwhelmed by all the energies that come with that. All the more reason that we need to learn it early and practice it throughout our development in order to master it. Instead, we've decided it's not worth it. That we only burden each other if we actually let people in on how we're truly feeling. We greet each other with the question, "How are you?", but we don't really want to know. We're just supposed to respond with a scripted answer. Actual feelings should be left out, unless they're considered positive, of course. So, we have no practice at empathizing. We spend our entire lives with everybody telling us they're good, even when they're not. What ensues is the development of a cognitive disconnect. We talk to people, but we don't commune with them. This creates a world of lonely in the best of times. When you really can't answer "good", you get a solid hit of the depth of the loneliness. It's exponentially magnified if you explain to someone that you're sick and they respond with, "But you look so good!"

It's consciously intended as a compliment. Yet, the purpose it really serves is avoidance. To me, it's a very loud signal that the person doesn't want to know. That's fine (I don't really enjoy talking about it) as long as my reality is affirmed by a change in expectations of me. If I have to remind someone that I can't be relied upon for driving, for instance, it's clear that the person didn't let my reality sink in. Which forces me to avoid her or to constantly remind her (whereupon, I am forced to bring up the topic more often than I would like, as I don't like my health to be the constant conversation. I use up what little energy I have to get out into the world so that I can expand beyond my miserable little life of illness.)

I also feel pangs of self-doubt. For two years, doctors weren't finding anything to diagnose while I plummeted into a debilitated state of near-constant oblivion. I was having seizures, but even those were invisible. Would that they came with convulsions. I might have been taken seriously sooner. But, no, I have partial complex seizures. They are quiet. I simply become profoundly confused, like an Alzheimer's patient, and then exhausted. One doctor told me I was having a psychiatric breakdown and needed psychiatric care. And, you know, with everyone around me not being able to see what was going on in my body, many of my friends wondered if I was losing my sanity. In the face of that, it's easy to start wondering yourself. You start saying, "If only I would just get myself up and moving and get things done, i would get over this. Set better goals. Get better organized. Pull yourself together!" If I look normal, I must be okay. Get over it, already.

Getting a diagnosis helped a bit. Still, there is that nagging voice of self-doubt with which I must come to terms. Every time someone tells me how good I look, that voice worms its way back into my consciousness. Then I push myself a bit. Do more than I usually do. Commit to more responsibilities in an effort to become more self-sufficient and be a productive member of society. Productive equaling worthy, of course. In the end, I crash. Triggering a sense of failure. Further deteriorating my self-esteem. I've had to give up a lot of pride in the last few years. The pride of a lithe athlete. The pride of a successful career. The pride of being highly intelligent, fun, outgoing and worldly. Almost everything that used to define me has been taken away. Worst of all, I feel helpless. I can't stand being helpless. I have always been self-sufficient and was secure in the fact that I could rely of my resourcefulness to get me through anything. Gone. It's all gone. That's a lot of grief to process. Now I need help. I didn't have any practice in how to ask or when to know that I needed to ask. And when I can't give back as much as I'm receiving, I feel guilty. When people think I look good and express surprise that I'm ill, I feel that I have disappointed them. I'm one huge ball of wasted potential.

For all this, I feel grateful. I live with a debilitating illness. Yet, on a "good day", I can get out and experience life somewhat normally. I can have brief respites. I'm sure there is a completely different set of emotional morasses to wend through when your body is deformed in some way, or you become confined to a wheelchair, or you have drag an oxygen tank with you everywhere. For me, when I'm feeling my worst, I simply stay at home and away from people. When I'm feeling a little better, I can re-enter society without the added layer of discomfort that people have when confronted with someone in a wheelchair or anything visually out of the norm.

I'm also grateful, because I have caring people around me. In a strange way, becoming ill has culled out the caring from the uncaring in my life. Those who have the compassion to continue friendship and support while you live with long-term illness are truly the best of friends. Those who wander away because they need you to be whole are not really missed after a brief grieving of what you thought was a friendship. With such supportive people in my life, the biggest emotional challenges for me are my own reactions to being sick. A reassessment of how I value myself and others. A deep look at what I have to offer to the world. When I was healthy, I had more choices, but having more choices doesn't push you to really consider which of your skills are the most meaningful. When I was healthy, the world was my oyster and it seemed there was always time to get to whatever I might want to do. I had a sense of limitless energy. With limitations come the need for setting priorities.

My life is simpler now. I can recall going through times when I was younger and considering whether I would be a good nun. Not a Catholic nun. More in the sense of being committed to a full-time spiritual practice in service to others. I would imagine relishing in the simplicity of it. I love clothes, for instance. I like beautiful fabrics, the art of structuring interesting pieces that flatter the human form, all mixed with a bit of whimsy. One can spend a lot of time thinking about her style, shopping for clothes, putting together outfits. While it is fun, it is also very self-interested. The idea of living with more stricture, in a simple uniform, and filling up that space with service to others is ideologically appealing to me. Still, I never chose that path. I kept thinking I might, while I kept moving further down the traditional path of work and family and social life. Getting sick changed all that. Due to sensitivities, I had to get rid of all my clothing and buy only natural fibers that had metal-free dyes. I'm not exactly in a uniform, but it's a far cry from the fantastic wardrobe I used to don. And while I have times of missing the artistic pursuit of it, I'm fairly content in my hempen pants and simple tops and handmade sweaters.

For all my pains and dysfunctions, frustrations and grief, my life is good. I have a wonderful daughter, an angelically supportive ex-husband, a comfortable home, and wonderful friends. When I do regain health, I surely hope that all that has transformed in me emotionally and psychically stays put. I think I'm a better person now.

So, is it better to look good than to feel good? There's no simple answer to that question. I can say that when someone tells you they aren't feeling well, responding with, "But you look so good!" is not appropriate. It feels dismissive. The unspoken opening phrase is "well, it can't be that bad..." You don't have to be dripping with sympathy or fall into a sullen state of despair. A simple affirmation of what you are being told can mean a lot. Think of it this way: if you're walking from your house to the store with a friend and your friend says she's feeling miserable, you saying, "But you look so good" is akin to you veering off to a side street for the rest of the walk. While you might both end up at the store and accomplish the errand you set out to do. The journey there was a separated one. Lonelier and more dangerous. By myself there is a greater risk of being accosted, for instance. There is safety in companionship. Even adjusted to "That must be hard when you look so good." is so much better. Because in that response is an acknowledgment of the complex reality and the sense that we're still going to walk down that road together. Maybe even holding hands. If that's the case, I'll be able to relish looking good even though I don't feel good. It's at least something.

Lyme Time

Unaspenser — Tue, 23 Dec 2008 13:45:26 GMT

I've always been a competent person. I've always had my own brand of competitiveness: the competition was about me doing the best I possibly could. I was an athlete. A state-ranked runner who held a long-standing school record for the women's 880. (Yes, this was before U.S. track went metric.) I was an honors student, tutored, participated in school plays, volunteered at the town's recycling center, planted flowers in median strips for the local Rotary Club and still managed to hang out with my friends and generally have a lot of fun. I was high energy.

This pattern continued for most of my adult life until about 3 or 4 years ago. (it's hard to pin down exactly when I started shifting gears.) In my twenties, I managed million dollar computer installations for major newspapers, played competitive couples tennis (we never lost), ran road races, skied, and traveled quite a bit. Believe it or not, I didn't consider myself a high achiever. I wasn't seeking monetary wealth or a top rung on any ladder. I was simply driven to live life to the fullest and to follow whatever path I felt compelled to.

I was so confident in my own resourcefulness that I was never concerned with the risks of a complete career change, or pulling up roots and moving. I was high energy and fast-paced. Even having a baby didn't slow me down. I was the CEO of a composting company while pregnant. Worked at the site and on the equipment until 1 week before giving birth. Put that baby in a sling and brought her to meetings about 1 week after she was born. I saw no reason I couldn't nurse a baby and do a job and, so, I did them both. And kept on "doing it" (probably with Nike's on!), or trying to, until the summer of 2005.

In the summer of 2005, I suddenly realized that I was tired all the time. I used to be the best sleeper on the planet. Go to bed, head on pillow, sleep with barely a movement, wake 8 hours later completely refreshed. That changed. Now I was having difficulty getting to sleep. I was waking in the night with aches in my bones and tingling and burning feelings in my hands, feet and face. In the morning I felt like I was hung over. I just couldn't get enough rest. I didn't know it then, but I had entered Lyme Time.

Lyme Time is life in a different operating zone. I had transformed from being the most organized person I knew to someone who couldn't find her keys and didn't know how to manage a to-do list. From someone who could run from one task to the next, with meetings and crises thrown in, without a hitch, to someone who couldn't recall why she had gotten up out of her chair and how much time had passed since she had stood up. Until then I had navigated the world on my own. Literally. I had backpacked solo in Brazil, vacactioned solo in the Maldive Islands, traveled with friends to numerous countries with ability to grab a phrase book and figure out how to get around. Now I was getting lost on the 8 minute drive home from work or on the way to the bathroom.

Forget all the aches and pains, the tremors and the twitches, the tinnitus and the hyper-acusis. These things had crept up on me. I kept telling myself I was just stressed. After all, I owned a business and was raising a young daughter. It's when "The Fog" kicks in that you truly enter Lyme Time. When you arrive at work hours later than you expected and you don't really understand why. When you realize that you're not seeing straight in the morning. I don't mean confused, I mean, your vision is so blurry the whole world seems under water. and that you have no idea how long you've been awake before you are able to walk across the room. You're so confused about basic things that you can't even make simpe decisions or discern what you're doing. Or even remember what you've done or not done. This is Lyme Time.

Suddenly, you're unreliable. You're disorganized. You can't be trusted. You can't take care of yourself, much less your child. The days, weeks, month float by. Appointments are missed. Tasks go undone. Life falls apart.

How does this happen? It starts with a tick bite. One you may not know you've gotten. The tick passes along a parasite: Borrelia burgdorferi, the Lyme spirochete. I won't go into all of the biochemistry here. The parasite itself is not the problem, per se. If it would stop releasing all those neurotoxins, it could be a welcome guest. But it does release those neurotoxins.

When I went to the doctor in 2005 seeking help because I wasn't feeing well, I described my malaise as "feeling like I've been poisoned." It took them 2 years to identify that I had Lyme disease. And, guess what, I was being poisoned. Poisoned with neurotoxins. Released in the brain and the joints and the eyes and any soft tissue it can embed itself into. I still am being poisoned. That's because, the longer you go before receiving treatment, the harder it is to get this bugger out. (I'll explain why another time.) So, I live in a constant state of being poisoned. It's a strange existence.

I'm in treatment now. Getting weekly injections. I felt somewhat stabilized cognitively over the summer and early fall. But I'm not better. The disease isn't gone. Ironicially, what I most wanted to clear up - the cognitive impacts, has gotten better with treatments, but that has only made me all the more aware of just how persistently badly I feel. I have more clarity about the unknown prognosis. With that clarity came some depression. I might have realized then in the past few weeks when the depression seemed to be lifting that I was getting 'foggy' again. It wasn't until I had a seizure that I got it.

Why did I have a new bout of cognitive dysfunction? Who knows? This disease operates under it's own terms which it chooses not to disclose. It's a stealth spirochete. The Dick Cheney of biology: it claims all your executive power whilst hiding out and avoiding accountability. It does seem to have cycles. It definitely acts up if I "over-do it". What this means, though, is that I am not self-sufficient. I am unreliable. I am highly sensitive (sensorially.) Like a canary in a coal mine. I am so many things that I never wanted to be. So many things that I always judged others poorly for and felt supremely self-confident about. I suppose I am humbled. I have had people tell me I am more peaceful. That may be the case, but I still wonder how I can work with other people. What I can do to earn a living. How I can feel worthy in my friendships? In any relationships?

Writing here is a test for myself, in a way. Can I be consistent? Can I be coherent? (Some days I can't recall nouns.) Can I maintain a relationship as a writer to an audience? As a member of this community? Is the value of my work diminished if I can't post consistently? (You can't be a "featured" writer here unless you post every day, I don't think. That indicates the value placed on consistent, prolific contributions.) It's not so much about the feedback, as it is about finding my way to accepting what I've become, changing my expectations of myself and carving a way in the world with these new limitations. It's about plowing ahead though I'm not going reap what I thought I had been sowing all these years. It's about trying to be a part of the Prime Time (the normal life) when I am forced to operate on Lyme Time.

That written, I hope to post some more of my observations about the Anglo-Saxon use of the vampire metaphor soon. Soon, being very amorphous in Lyme Time.....

Writing About Lyme

Unaspenser — Thu, 11 Sep 2008 01:39:32 GMT

I live with Lyme disease. I won't write here about the daily travails. Frankly, it gets boring. Perhaps, if there's interest I'll give periodic updates. I will write an introductory piece that records the challenging path to diagnosis, as a part of the body of work out there documenting the vagaries of this disease and our medical system.

I'll also write about the science and "controversies" surrounding Lyme disease. My hope is to make it understandable for the layperson. I'll collect good, informative links, also.

Why do this? Well, of course, it's of interest to me. More than that, there is a lot of misinformation out there. Only a few months ago, a friend of mine took her daughter to the doctor's office with an engorged tick attached to her body. My friend didn't want to remove it improperly. So, off they go to the doc. What does he do? He plucks it out and throws it into the trash and says, "done." When she told this anecdote I was horrified. That tick should have been sent off to a lab for testing. I instructed her to go back to the doctor and demand a round of anti-biotics for her daughter. Which she did. Thank goodness.

Lyme is a very challenging disease. It doesn't follow any rules, really. 50% of the people who acquire Lyme never have that bull's eye rash. 35% of them will test negative on the standard Lyme test. Some never exhibit the early flu-like symptoms. Some get neurological symptoms without arthritic symptoms.

One thing we know for sure: the best chance of actually getting Lyme out of your system is to get anti-biotics right away. The longer you wait, the less likely you are to banish it. So, if you've been bitten and you can't confirm that the tick did not carry the spirochete, you should protect yourself with a prophylactic course of anti-biotics.

How was it that this doctor didn't know that? We live in Lyme Country. Still, practitioners are not being properly educated about Lyme. That leaves it up to us to educate each other so we can protect ourselves. Hence, I will do what I can right here.