Testing, Testing, Wrong.

I'm being put through a new battery of tests by my new neurologist. Some of them are tests I've done before and some are new. Its an intense 3 weeks. I'm happy to have all these tests done if it moves the process along and we can figure out how to get treatment for me so that I can recover my life.

However, I find some of the tests problematic. I don't understand how the medical world figures out anything, sometimes. Here is a short list of the inanity of the testing protocols I've faced:

1. I have complained for years that my hearing has become over-sensitive. Air conditioning systems are a constant tidal wave roaring through my head. I can hear small sounds hundreds of feet away and they grate on my brain. Sharp sounds are just that: piercingly painful. The world is a heavy metal concert assaulting my head every day. It is the single symptom for which I would take my life if I were so inclined. I have only had one doctor even note my complaint about hearing.
   
   When she did, I was sent for hearing exam. An exam to test for hearing loss. Hey, guess what? I don't have any hearing loss! Yet, this is the screening test for referring you to a hearing specialist. Even though hyper-acusis is a known hearing condition, in our health care system, controlled by insurance companies, one must fail a hearing loss test to be referred to an ear doc. Testing, testing, wrong.
   
2. I live with tingling/burning/numbness/sharp pains in my extremities. For the most part this is just annoying and distracting. I've learned to move through the pain and the other sensations have become part of the white noise of my internal self. It does bring functional issues. I don't feel terrain properly under my feet, so I can be klutzy, even injure myself. I also have tremors and those cause functional issues. Sometimes I can't write or hold a cup or do myriad things that require fine motor control. At this point, since I'm used to having pain which is not a real "injury", my brain doesn't react to the pain in my feet the same way it used to. What this means is that I've actually injured my feet or ankles without realizing it. Not good. Mostly, though, these neuropathies are an indicator that something is going very wrong in my nervous system.
   
   So, I'm sent for an EMG, or nerve conduction exam. The exam took more than twice as long as expected and, of course, I asked why. "Because we're getting the lowest possible reading in the normal scale on one side and the highest possible normal reading on the other side. We never seen anything like this before, so we're rechecking to make sure we're getting the right readings. This is very abnormal. But, both readings are in the normal range, so we're reporting it as normal." With that, there is no more consideration of my neuropathies. Testing, testing, wrong.
   
3. Yesterday, I went for an Autonomic Nervous System test, aka Tilt Table Testing. The docs have determined that there is something wrong with my autonomic system because I have body temperature control issues, heart palpitations, unexpected shortness of breath, sudden weakness, high IgG levels without having Celiac Disease and I suddenly became allergic to every single thing I've been tested for. The one test for whether my autonomic system is in disarry is apparently this Tilt Table Testing.
   
   In this test, they hook you up to pulse monitors, blood pressure monitors and breathing monitors. You lie down and get relaxed on a table and they take baseline measurements. My resting heart rate is 50. Then they have you do a breathing exercise. Basically, deep breathing: "breathe in as deep as you can for 5 seconds, then let the breath out over a 5 second period." Meditation anyone? I do a lot of it. This kind of breathing is calming for me. I'm not sure what they're measuring with this. But then, they strap you onto the table and tilt you up to a not-quite-vertical position, with one arm propped out parallel to your heart level. It's a stress position. Its fairly uncomfortable. My wrist and elbow on the propped arm were in pain, my knees and feet were in pain. I was physically uncomfortable. What they're looking to do here is to stress the autonomic system and see if the heart rate/breathing/blood pressure dynamic gets out of whack. Only one problem: I don't necessarily get stressed by physical discomfort. I can breathe through it. I used to be a competitive athlete. I performed in state aerobics competition with an ankle that I had sprained just 2 day earlier. I broke my wrist about 5 years ago, walked to my neighbor's house  and asked if they would sever me dinner before taking me to the emergency room because I knew it would be a long wait. I was very calm. Its just something I've learned to manage. I can acknowledge pain so that it can be attended to without becoming stressed. Pain is temporary.
   
   So, if they were trying to create a stress reaction in my body, physical discomfort was not the way to do it.  
   
   Meanwhile, my heart rate peaked at about 80. Now, that's a 60% increase over my resting heart rate. If anybody else's heart rate had jumped 60% instantaneously, it would have been noted as a stress reaction. Not mine, because 80 is a normal resting heart rate for many people and it is not considered to be stressing the heart. So, it will be recorded as "normal". My systemic dysfunctions are not going be validated. I'm penalized for starting at a much healthier baseline. Testing, testing, wrong.

Don't get me started on how the insurance-controlled testing protocol for Lyme meant a 2-year delay in diagnosis. Now, if that Tilt Table technician wanted to see my body get stressed, he should have asked me to talk about how this damn system is screwing me over!

One Strand at a Time

After beginning to explain the dysfunctional system which leads to Lyme patients going untreated, I felt a little overwhelmed by all the strands of this diabolical web. I had hoped to post a follow-up this week, but became a little paralyzed by the breadth and depth of the issues, which include but are not limited to:

• The Dole-Bayh Act of 1981
• Insurance Industry Exemption to Federal Anti-Trust Laws
• ERISA 514 (one clause in a huge federal bill that exempts Insurance companies from state laws)
• monied interest in developing vaccines, treatments, tests, etc.
• Insurance industry practice of denying claims as a matter of course in order to save money
• the confusing chaos around an emerging disease
• the closed-loop medical establishment (with repercussions from doctors protecting one another from outside scrutiny to the controlled distribution of research money)
• the lack of any independent, official body advocating for patient well-being as the number one priority in health care dispensation
• the impacts of a socio-political-economic system that puts corporate income at the top of its hierarchy of needs
• a medical science philosophy where a patient's symptoms aren't considered real until someone can devise a test to verify said symptoms.

There are so many threads in this web. Some of them, when seen by themselves, may seem innouous. Others are problematic enough on their own to make you wonder how any reasonable human being could have thought that it served any public good to put it in place. Still, its not until you start to see how all the pieces fit together that you see the infuriating nature of it. Each strand strengthens the diabolical web, while the individuals twisting their one strand can convince themselves that they are only doing what they are required to do. They can ignore how their works fit into the overall trap and maintain an internal feeling of plausible deniability when it comes to culpability.

Of course, its when you are sick and trying to navigate this system that you are most likely to have the light hit the web at just the right angle for you to see it. When you have the least inner personal resource to fight the system in order to get what you need.

I write this post today as a sort of check list. To help me remember some of the many threads that need to be explored in order to shine that light on the web. I'll simply have to tackle one thing at a time and see if I can manage to show how they are tied together along the way. For Monday, I'll update the story on the IDSA and what has happened since they signed an agreement with the CT State Attorney General to review their guidelines. The case of the IDSA, their conflicts of interest, their connetions to the medial establishment, their guidelines and how they get used is a perfect demonstration of the trap created by the web. To write about it though, I must try to pick little chunks at a time, as it becomes a tome faster than the vibrations of the prey reach across the web to the spider.

Who is the spider? Well, I think we are. Every one us. We have, every step of the way, refused to revolt against the system we've watched being built over decades. More than a century, even. Because while the medical system has been radically altered with laws created in the last 50 or so years, the foundation for it all goes back to the laws that gave corporations "personhood". There are so many profound social dysfunctions that spring from that one topic. But, it seems to be getting way beyond a discussion about Lyme Disease, doesn't it? What if there is no way to get solid research available to the public and to force insurance companies to let doctors determine the best treatment for their patients without tackling these foundational issues? The more I learn about the obstacles to getting treatment for Lyme Disease and any ensuing health conditions, the more I run into these questions. So, my blog will have to traverse the ground of issues specific to Lyme Disease, such as managing symptoms, getting the right tests, learning about treatment options, etc, as well as, bigger public policy questions of a health care system that serves the people well, including the political and legal obstacles to shifting towards something compassionate and sustainable. I hope you'll bear with me, as I'm sure it will be a meandering amble.

Undue Influence

Wow. Had you asked me, I would have said with such certainty that I had already blogged about the Infectious Disease Society of America's (IDSA) Lyme Panel. Now, I look through my posts and see that I have not. This is way overdue, then, as the IDSA's Lyme Disease Guideline Panel (LDGP) and their relationship to insurance companies and their practices is key to understanding why Lyme Disease patients are left to suffer and die.

Before I begin there are two things to understand:

1. I want to be very clear that the IDSA is an organization which researches and advocates for many infectious diseases. They have a very admirable history as regards their work in the '80s and '90s pertaining to AIDS. When I talk about the IDSA here, I am only referring to their Lyme Disease Guidelines Panel (LDGP). 
2. It should also be noted that the IDSA is a private specialty society. It is not a publicly elected body. It it not a government agency. It has not been appointed any authority by any governing agency.  As such, there is zero accountability for its actions unless legal action is taken up against them.

So, why am I writing about the LDGP? Because this private society has an enormous influence on how Lyme Disease is defined, tested for and treated throughout our medical system. This small group of people, with no accountability whatsoever, is controlling the dispensation of health care to hundreds of thousands of patients.

How are they afforded such influence?  Because health care in this country is controlled by health insurance companies. Private, for-profit corporations. As private, for-profit corporations, insurance companies are legally obligated to maximize shareholder dividends. No other concern can over-ride this unless there are laws enacted to enforce other priorities. For an insurance company to maximize shareholder dividends, they must minimize expenses. The majority of the expenses for a heath insurance provider is the cost of providing care to customers. So, they must minimize how much care they provide, within the limits of the obligations stated in the insurance policy contract they have agreed to.

One way to minimize how much care you provide is to justify denial of care by deeming it unnecessary. As reported in U.S. News and World Report, where David is the patient and Goliath is the insurance company:

What few Davids know is that insurance contracts by law grant companies the legal right to manage a patient's care, including denying it, sight unseen, and give them the final say, if challenged. Unless the state steps in.

So, insurance companies seek out panels, studies, and consulting doctors and scientists that will support their denials. This search is, of course, one of cherry-picking. Any panel, study or consulting doctor will do. Its all a numbers game to them. We can talk about the insurance gambling industry later. What is pertinent here, is that a publicly unaccountable panel from a private society is serving the interest of a profit-driven insurance industry where the motivation is to deny care to patients. In this system, there is very little that the patient can do to fight for her own health care. There is very little the public at large can do, as there is no access point for the public to have a say in how the system is controlled. We are at its lack of mercy.

Lyme Disease is a fascinating case study in how this system fails patients and doctors. It is a complex story that dates back to laws enacted in 1981, just before the discovery of the organism that causes Lyme Disease. It is a perfect storm of the right to own bio-organisms, the right for researchers to privately own the results of publicly funded research, a disease that is challenging to identify because it is the newest "Great Pretender" with myriad presentations, patients who lose their ability to function and therefore fight for themselves, a privately run health care system, personal profit motives, egos that can't admit error, and the increasing need for people to protect themselves from potential litigation. Its a thriller which is still unfolding on a screen cast across the country with a supporting cast of hundreds of thousands of people suffering and dying in wait, while the main characters play a game of intrigue isolated from the impact it is having on the people they claim to be protecting.

For today, we'll stick with the basic controversy. Insurance companies use the LDGP guidelines to determine what they will pay for when a patient has Lyme Disease. The LDGP guidelines state that Lyme Disease is cured with four week of antibiotics, regardless of how long you've had the disease or what your symptoms are. So, insurance companies throughout the United States will only pay for four weeks of antibiotics.

No signs of improvement at the end of four weeks? Too bad. You're cured. If you're still sick, it must be something else. Oh, billions of tests can't find anything else, but still show Lyme Disease? Well then, its a psychiatric disorder. What? If you take antibiotics long-term you feel better? Meh, that's a placebo effect. Again, its a psychiatric disorder. Those seizures, tremors, heart murmors, that palsy, those pains that keep you from walking, the near blindness, the loud ringing in your ears, the hyper-sensitivity to light, sound, movement.... all these thing are in your head. Because the IDSA's Lyme Disease Guidelines Panel says you're cured. Now go away.

Now, if every panel of private medical socities concurred and all the research out there supported this conclusion, perhaps we'd have to figure out what's going on with these people. Lyme Disease is the biggest epidemic we have right now. There are an estimated 300,000 new cases each year. A significant percentage of these continue to be sick after receiving the unofficial, official treatment. People who have never had psychiatric problems before. Do we have a sudden epidemic of psychosis? If so, shouldn't we be urgently looking into this?

The truth is that 34 organizations have challenged the LDGP's guidelines (scroll down for link to PDF) in a recent review process. A process which came about because the CT State Attorney General investigated the LDGP for conflicts of interest and found:

Blumenthal's findings include the following:

• The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
• Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
• The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee;
• The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus";
• The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
• The IDSA portrayed another medical association's Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.

That investigation was reported in 2008. Its 2010. Do Lyme patients and their doctors have more freedom to treat as they see fit, now? No.

This story is a juicy one. Too juicy to be told in one post. More to follow....

Bugaboo

Today I had an MRI and Brain SPECT scan. These are relatively innocuous tests for most. I didn't even have to get the gadolinium for the MRI. I did have some radioactive liquid injected for the SPECT. But here's one of my bugaboos about the medical process:

At each new place I've gone to I am asked to fill out forms about potential medical conditions, implants and symptoms. If you've ever gone for a test other than a blood draw, you're likely familiar with the "check list". Pages and pages of boxes to check "yes" or "no", whether you have this condition, or that symptom or any metal in your body or the possibility of an allergy. On and on and on.

I wish there was one universal list that I could fill out and just deliver a copy to each new facility. That's not the bugaboo, though.

Of the myriad things listed on those forms, they never mention the single most bothersome symptom I live with. The one thing that could drive me to drastic measures. Its The Symptom which makes me wonder whether life is bearable. Of all the symptoms I have, if only one thing could be fixed, this is what I would choose.

Not only is this symptom not on these lists. When I complain about it to the doctors, I cannot see a specialist unless I fail a screening test. The screening test is testing for the opposite problem of which I complain. There is absolutely no awareness of the vast impact this symptom has on a person. People have been driven to suicide because of this one symptom and yet it virtually doesn't exist to the medical world.

That symptom is hyperacusis. Over-sensitive hearing. Almost every history form in every doctor's office asks about hearing loss. I have only been to one that has asked about hearing gain. That was the otolyaryngologist that specialized in tinnitus and hyperacusis.

I won't go on to much about what its like to have hyperacusis. To give a you sense: the other day I was going crazy at this scraping sound that was ripping through my brain. It was unbearable. Its not simply that its so loud that I can't focus on anything else. Its the pain. As though someone were taking a metal emery board to my brain. Sharp sounds pierce my head like an ice pick. This particular sound was grating on me for what seemed like forever and I couldn't find the source. I was on the upper floor of our house and I kept looking out the windows to see if I could identify where the sound was coming from. Finally, after about 20 minutes, I saw my elderly neighbor emerge from behind the house that lies between our two houses. He was shuffling his feet in his driveway. About 200 feet away. That was just one of the aural challenges of the day.

Today, the fact that medical facilities have no awareness of hyperacusis was very painful for me. The operator of the MRI machine was at least sensitive to this problem. She gave me earplugs, along with earphones to protect my ears. Still, it was an hour of the fans, the machine engine, the cacophony of banging and buzzing sounds from the procedure and all the ambient sounds of light fixtures and air conditioning, etc. I emerged feeling that I had been beaten about the head the entire time.

Then I moved on to the SPECT scan. This was supposed to be the non-stimulus test. They inject you with a radioactive "tracer" and then you sit quietly for 45 minutes to reduce brain activity. They turn the lights down, pull a curtain and step away leaving you there to nap. Only they left me in the room with the SPECT machine running, the air conditioning blasting and only a curtain between me and the staff conversations with laughter, as well as, all of their activities: shuffling papers, placing things on tables, walking across the hard floor surface. If they were trying to lower the stimulus to see the blood flow of my brain at rest, they did not accomplish that goal. My brain was registering assault.

I wonder what it would take to get medical facilities to really understand the needs of a patient with hyperacusis.

I wonder how long I can live with this before I beg for someone to just disable my hearing altogether.

MA Bill H1148 update

You may recall that I testified in front of the Massachusetts Joint Committee on Public Health this past September. As my previous posts noted, I've been pretty out of it since then. I do belong to a couple of online Lyme support groups where these issues are discussed, however. As I emerged from my prolonged stupor, I was dismayed to realize that I had not heard of any action on this bill since that hearing. So, I inquired.


The reason I haven't heard of any action is that there has been none. The bill is stuck in committee. I will have to make further official inquiries to find out why, but word on the street is that the Chair of the committee doesn't want to "legislate medical care". I'm unclear as to whether this is the House Chair (Representative Sanchez) or the Senate Chair (Susan Fargo). If you are a constituent of either one, please call and ask them to support H1148 and ask why, if they don't.

This infuriates me. Medical care is currently being de-facto legislated by an unelected group which is ethically compromised. (Update on the latest IDSA shenanigans coming soon.) The point to this bill is to allow doctors to decide the best care for their patients. Not insurers and unelected panelists who have financial - and I believe personal legal - interests in the matter.  Lets face it, hundreds of thousands of people have suffered, many have died, because they have suppressed data and protected their own interests. I don't believe for one minute that their big concern is that patients will be given too many antibiotics. There are plenty of ailments that get treated with long-term antibiotics. There are also plenty of ailments where patients and their doctors are in control of what risks they are willing to take in order to find a path to health. I heard one doctor state that he thought the only route to end this debacle was to offer amnesty to the panelists. Wow. By doing so, we would be acknowledging that these people were given power over people's lives, that they abused that power, that people suffered, but that we won't make them accountable. That seems to be the modern American way and I feel ashamed our country for choosing that option time and time again, as it only encourages future abuse of power. Anyway, at this stage in the game, the IDSA panelists have powerful personal motives to fight to the bitter end to keep their guidelines sanctioned.

Let's be clear here, H1148 does not legislate any particular treatment plan. It doesn't require that a doctor give long-term antibiotics. It doesn't require that a doctor do anything. What this bill does is give the power of determining what the patient needs back to the doctor. It is the doctor's discretion. Not dictated by a law. Not dictated by some far away panel. And, most importantly, not controlled by insurance companies whose primary interest is healthy profits, not healthy patients. This bill is the opposite of legislating medicine. It is a bill that is required because we have a corrupt medical system where corporate profit motives dictate how we define, test for and treat illnesses. Lyme Disease is not the first medical condition that has required legislation to protect doctors and patients. Until we see real health care reform, where the profit motive is removed or significantly reduced from the dispensation of medical care, more and more laws like this will have to be enacted. It is the only path that patients have to fight for their right to health care.

Please, look at the list of Senators and Representatives on the Massachusetts Joint Committee on Public Health . If you're a constituent of any of them, call or write to urge them to move H1148 along. If your State Representative or Senator is not on the committee, find out if they have supported H1148. Ask them to sign onto the bill and to help get this bill passed. Many lives are depending on it.

Thank you!

The Doc Was In!

Its been nearly a year that I've been trying to get an appointment with the one neurologist in my state, whom my insurance will cover and who knows how to work for a Lyme patient with auto-immune disorders. This delay was first due to an over-loaded practice. We had been calling since last March to get an appointment and had been repeatedly told that they couldn't even talk about booking an appointment for months to come.

Then, in September, I testified in front of the legislative committee considering laws to protect doctors who want to treat their patients with Lyme. I later learned that the neurologist had seen me there and instructed the staff to make room for me. Only, then the doctor went on medical leave for several months.

A tentative appointment was made for January and it was canceled at the last minute. So, today, I was anxious that the same thing would happen again. However, the doctor was in!

"How did it go?", you ask?

I can't say I'm optimistic. Though, that has nothing to do with the appointment. I started this medical odyssey in 2005 and its been a trail of frustration. At this point, I expect the system to work against me. That said, I liked the doctor a lot. We had to walk through the history again and the questions were very good. After some preliminary neurological testing, the doc confirmed that I showed signs of demyelination.

Of course, more testing must be done. All the testing must be re-done, because its been so long that now the tests from last winter must be done again. The insurance industry likes "fresh" tests. Through no fault of my own, I will have to be put through the ringer again. All in the hopes that this doc can navigate the system well enough to get the insurance company to cover my treatment. In talking to the doc and the staff, I do get the sense that they know what they're doing. So, I have some faith in that.

However, I'm concerned that having all the Lyme testing done again, along with new Lyme tests which I've not had before, will do the opposite of what we seek, which is to de-link the Lyme and the auto-immune disorders. If the insurance company sees that the doc is in any way linking the two, they will deny treatment. My hope had been to have the doc look strictly at the auto-immune stuff and only do testing regarding that, so that the diagnosis looks stand-alone. The doc's professional integrity won't allow for that, however, so the Lyme tests are being required.

I'm not looking forward to the testing, either. Some of it is benign, certainly. Tedious and wearing for me because being out in public is wearing, but no big deal. Other tests, however are unbearable. Particularly the EMG. The one where they zap you with electrical currents all over your body. I'm pretty sure this would be a painful test for someone who didn't have hyper-sensitive nerves. For someone who does, its easy to imagine that this was first used as a torture device and then somewhere along the way some doctor said, "hey, look what we can see with this!" I happen to be a little more wary of this test than some because my first go round was supposed to 30 minutes or so and it went for 3 hours. I was in tears and these docs are just looking at their monitors with curiosity and zapping me again. They hardly seem to notice that I was there.

Anyway, the upshot of today is that I will spend the next few weeks doing tests, tests, test. Urine, blood, MRI, brain scan, cognitive testing, EMG, blah, blah, blah. The hope - that thing I only have a vague sense of these days - is that we get enough objectively observable data which meet the insurance criterion for covering the IVIG treatment. Doesn't matter that the docs all say I need this treatment. Gotta find a way to get around the insurance game where they pay doctors, researchers, anybody, to give them any reason to justify denying your claim. No matter that what they're denying you is your life.

I see the doc again on March 17. Talk to me then.

In the interim, I'll write some posts soon about what's going on politically in the world of Lyme. The IDSA has been up to no good. More and more states are considering legislation to require insurance companies to cover what a patient's doctors' say she needs rather than allowing that to be dictated by these ethically compromised "guidelines". Plenty of interesting fodder to fill the space between now and then. Stay tuned.....

Absence

I've been feeling defeated for the last 6 months, so I took a personal sabbatical. I stopped writing. I stopped trying to find a way to earn an income. I stopped everything except caring for my daughter. I immersed myself in escapism. I simply didn't have the energy or spirit to engage the challenges of my health and life situation.

My father passed away last August. Deaths are generally sad affairs and this was no different. It was fraught with our family's particular dysfunctions. Being physically disabled didn't help me cope with it, well. I was not able to get treatment while I was away and as I became more and more symptomatic, I was more and more vulnerable to the emotional overwhelm of it all. I was left profoundly sad.

I came home and scheduled an appointment for my bicillin injection - the only treatment available to me for the past year - only to learn that the insurance company had retroactively rejected the claims for that treatment. That is, they took back the money that they had already paid the clinic. I was told that I now had a past due bill and could not receive more treatment unless I could pay that bill. Thank you, Harvard Pilgrim.

Harvard Pilgrim has never sent a single communication to me, their customer. I had no way of knowing, until the clinic sent me a bill, that any claims had been rejected. We had to go through the broker of the insurance plan to learn that they rejected the claim because they have a lifetime limit of 1 month treatment for anything related to Lyme Disease. Doesn't matter if you've actually recovered or not. It also doesn't matter that we don't acquire immunity to Lyme and you could be bitten again and have a fresh case of Lyme. If you've already been treated, you'll get another dose for Lyme Disease.

My ex, who has been an absolute angel about providing a roof over my head and making sure I get whatever care I can, also had difficult news for me upon my return from my father's death: we had finally figured out how to manage living in separate houses. Only his end of the arrangements hadn't worked out and he had to move back in. As it turns out, the housemate I had found, had life issue of her own and she informed me upon my return that she wasn't going to stay.

Additionally, the one neurologist in MA who will see a Lyme patient and knows how to deal with the other health issues that can ensue, had to cancel my September appointment. She was away on emergency medical leave. A tentative appointment was made for January. I was to see her to figure out how to get treatment for the auto-immune disorders I live with now. That would have to wait.

So, August was a just a month of "everything that can go wrong will". Everything felt pointless. I had mustered a lot of energy in the previous months to find some way to get my life back on track and it seemed that the universe was mocking me. So, why try? I didn't have it in me to be angry. Or creative. Or productive. I just stopped.

I'm not sure where I am with it all now. I have come out of the complete state of disconnect and am doing a little bit. Re-envisioning what I can do with my knitting design work. Looking at what can be done to get around the obstacles to my health care. I don't feel highly energetic. I feel somewhat dispassionately engaged.

News about what's going on with the IDSA guidelines, their testimony in the NH legislative process and the recent Supreme Court ruling allowing corporation unlimited political influence are not encouraging. Everywhere I look, I see a system based on personal greed with little concern for the vulnerable in our society. Of course, there are individuals and even groups that care, but the bigger system is entrenched in a very de-humanizing way. My losing battle to get treatment is very related to that. When you're sick, how are you supposed to face off with an entire culture?

This is the question I grapple with. I certainly don't expect to take on the big fight. Its more a question of how to create an oasis in the desert of our humanity, wherein, I can get the treatment I need and have that oasis as a resource to drink from when I make expeditions into that desert.

At the bottom of all of this, is that I am a person of visions. Of dreams. Of longings. I dream of way society could be, yes. But I also dream of a life I could have regardless of the bigger picture. And its not a pipe dream. Its obtainable. I don't care if my feet are in pain. Or I'm tired all the time. Or that the sounds of the world are assaulting me constantly. Or even if my brain is foggy half the time. What I care about is that the cumulative effect of all these symptoms is that I can't pursue my dreams. I don't need full health to get back on that pursuit track, but I need some relief. Enough that I can be self-sustaining and have the personal space to let the dreams in.

This is what is so infuriating about the debacle of our heath un-caring system. Its not that people are sicker than they need to be. Its that their souls are in despair. Their dreams are erased. This is our particular form of genocide. Its not racial or ethnic. Its a genocide of the vulnerable.