I have a personal blog. I write about different topics there. I like to write. Even when I realize no one is reading, I still write. Usually, anyway. My blog has been sitting fallow for the past 5 or 6 months, as I hit a point where I felt that I might have nothing left to say. Why? Because, after my first signs of demonstrable improvement in my health, from a long-fought-for treatment, the insurance company denied the claims and halted my treatment. No reason given. They just can. And I was left to decline. To languish, yet again. This diary is a lament about languishing. Perhaps, in it, we will recognize something about our health care system, our culture, ourselves. Or perhaps, it will just be me whining....
It could be said that I have lived. Really lived. My life experiences have been rich. A state-ranked athlete and honor student in school. My record for the 880 yd run lasted at least 6 years, as it was standing when my youngest sister graduated. I was an Air Force "brat" who lived all over the country growing up, with a family summer home in Maine as an anchor. By the time I graduated high school I had ridden horses, camped in Yellowstone for 6 weeks, done archaeological explorations of abandoned silver mine towns in the Sierra Nevadas, won numerous musical awards for piano and the euphonium, learned and taught 8 instruments to other students, taken jazz dance classes in New York City, sang in the Presbyterian cathedral in New York City, had MSG poisoning in Chinatown, visited Greece with a teacher/guide who spoke 17 languages and facilitated UN-type evening. I generally drank up life. I was 17 when I graduated high school.
I got more adventurous as an adult. I left college early with my computer programming skills in hand, knowing that I could work anywhere I wanted. I traveled the world. I lived in London, Rio de Janeiro, and Sao Paolo. I got lost with a companion in the mountains of Brazil, scrabbling through rotten breadfruit, running into "banditos" and nearly interrupting a nighttime ritual of the Macumba. I soloed on a spec of an island in The Maldives for two weeks, rode an elephant in Sri Lanka, water-skied off a house boat on Lake Powell for 10 days, wreck-dived and bare-boated in the Carribbean. I was healed by The Woman in the Rock in Manguratiba. I've had a frog meet my rear end on a toilet in Florianopolis. I've skied Tuckerman's Ravine and out of bounds - due to white out - at Snowbird. I've trailed the Black Madonna in France. Twice designers have presented clothing made for me without my knowledge. My custom roller skates, on which I dance, have been on all these adventures.
My work has been no less interesting: I installed and customized electronic publishing systems for major newspapers, wrote a membership program while teaching aerobics at a gym, was the financial director of a nationally recognized community gardening organization and CEO of the first urban composting company in the United States, where I did everything from marketing to driving loaders and dump trucks. I owned a fiber arts community center/yarn store and hosted a vibrant community of mostly women.
There's more, of course. You can't detail a life in a couple of paragraphs. But, I gave birth at home. On Halloween. Whilst answering to trick-or-treaters. Loving it. Always loving what I did. I've always been lucky to be able to do what I think I want to do. I always felt I had the power and resourcefulness to choose. Until 2005.
I was 42 when I realized that I had been profoundly exhausted for months and was losing my ability to be organized, to remember things, to make decisions. I had tingling in my feet, hands and face. Killer neck/headaches that would disable me in an instant. Such pain in my knees and feet that I couldn't walk. Sometimes I would wake up unable to see. Never a fan of Western medicine, I had to be convinced by my acupuncturist to go see a doctor and get antibiotics for Lyme. Please note that in August of 2005, an acupuncturist diagnosed me Lyme. For, as soon as I opted to comply and make an appointment with a doctor, the languishing began.
The doctor - well, the nurse practitioner, actually, since the doctor never even bothered to meet me - can clearly see that there is something seriously wrong with me. Preliminary neurological exams show that I have lost reflex in my ankles completely and it is very diminished at my knees. I am referred to a neurologist. The appointment is made for February, 2006. A six-month wait. My life is falling apart around me. I can't take care of my daughter or my business or my home. My insurance company says that this doc is my PCP and I have no other recourse but what he orders. I am to just sit and wait for 6 months. I live in Boston. Medical Mecca of the US. How is it possible that a case like mine is not seen with any urgency?
Oh. I should mention, that at my request, I was tested for Lyme Disease. I knew nothing about Lyme or the testing or any of the other things I would learn years later. I was told I did not have Lyme. The ELISA says so. Later, again, I would see the paperwork and find out that it was equivocal, not negative. But, oh well, what's a few years of my life?
I tried to go on with life, but my business started faltering and I became more and more worried about my young daughter's welfare. In a desperate move, I make arrangements to share the house I own with my ex, so that life is more manageable. Stultifying, but practically-speaking, manageable. It's 2011 now and I'm still here, sharing a house with my ex, who is exceedingly gracious to keep a roof over my head and food on my plate, but we both feel trapped. It was supposed to be temporary.
I saw the neurologist in 2006. I went into the office on my own two feet and was gurney-ed out to a hospital stay via an ambulance. In the hospital I was treated to being kept up all night, only to be told in the morning, that I was just under stress. (By a very young, male intern who had the nerve to sit on my bed, grab my hand and tell me about how he once had tingling and it went away when he reduced his stress.) The discharge orders included a pre-made appointment with my PCP, in March.
When I arrive at the PCP's office for the appointment, I sit and sit and they don't call my name. I go back up to the receptionist and she gets the doc. He walks out and says, "why are you here?" I show him my discharge papers. He says, "you have neurological issues, you need to go back to the neurologist." I make an appointment with the neurologist. For June.
Meanwhile, I decide to get a new PCP. You know, one who might actually see me. I ask around and am referred to someone by 3 different people, but his practice is full and I'm told to sign up with his colleague because he will give me consults if I do. So, in the summer of 2006, I have my first appointment with PCP2.
Before that, however, I have that appointment with the neurologist, who upon seeing me says, "Why are you here? I've already seen you." I respond, "But, I'm not any better and the PCP says I'm a neurology case." She seems annoyed. I can't recall if she did anything at all at that appointment. By this time, I'm moving through life in such a daze that I can hardly remember anything or find my way home from around the corner. I'm in so much pain, I'm using crutches to walk sometime and my feet and hands are burning so strongly that it's constantly excruciating. It's been nearly a year since going to a doc and I'm fairly certain I am going to die. Or wither into nothingness.
So, I see PCP2, who lectures me about a mammogram and a pap smear. She listens to my woes for a couple of minutes and then agrees to ask GoodDoc for a consult.
I think she also instructs the neurologist to do some more tests. I can't remember if these happened in 2006 or 2007. From about June of 2006 to about August of 2007, I'm a lost soul. I had to hire someone to manage my business. I had to stop driving. I had to sleep a lot. All of my senses became extremely hyper. I couldn't bear light or sound or touch or motion around me. I had increasing tremors in my hands and neck. The pains in my joints became more and more excruciating. I can barely put together any whole memories. One exception: the torture. Hours of electric prodding to test my nerve conduction. It was supposed to be 45 minutes, but they kept re-dong the tests. When I asked why, I was told, "You're getting the highest possible reading on one side and the lowest possible reading on the other. We've never seen anything like it, so we're having everyone take a look." (while I'm crying). "But both are within normal range, so we'll call it normal." Thank you for playing our game.
Some time in 2006, I had that consult with GoodDoc. He determined that I had very high levels of 6 or 7 heavy metals and put me on chelation for 8 months. With no instructions other than to take the pills he prescribed and no appointments in between. I would later learn that there is much more to it, for it to work. Or maybe he told me, but didn't write it down. There were no written instructions. I took the pills. For 8 months. Nothing happened. In 2007, he re-did the tests and my metal levels had not changed much. I asked him if he could look into some other possibilities. Do a little research. He tells me that he sees patients from 8am to 6pm, every 20 minutes. He has about an hour and a half at best to do any paperwork for all of those patients. He has a son he needs to get home to. I hear all about how hard his life is. Demanding wife is expensive. Job is taxing. He does decide to test me for allergies. I was allergic to every single thing they tested me for. Never had an allergy in my life, but now I'm allergic to everything. But, no follow up. Just, "oh, you have allergies. You might need to keep Benadryl around." GoodDoc didn't know what else to do and sent me back to PCP2.
In June of 2007, I went to back to PCP2. I had recently learned from my acupuncturist that the screening test for Lyme was notoriously inaccurate and that I would be better served to get it redone along with a "Western Blot". PCP2 was not supportive.
I also described to her these episodes I was increasingly having where I was suddenly like an Alzheimer's patient. One moment I could be sitting with friends knitting - something I'd done for 20 years and was professional at - and the next, I had no idea what these things in my hands were and who these people were and I could hear noise that seemed to be coming from them but I couldn't decipher it's meaning. I'd be struggling like crazy to gain some traction, but everything felt so slippery. Then I'd be profoundly tired and oddly sad, with tears rolling down my cheeks. (My friends and I started referring to it as "Knitzheimer's".) Bad enough sitting safely with people who know you. Potentially life-threatening when you're driving a car.
With a steely coldness and a plastered smile, PCP2 asked if I had a therapist and could she call him. I said, "no, you may not call my therapist." She looked at me and said, "You're having a post-traumatic psychiatric breakdown. I think you need psychiatric care." There had been no trauma and I had zero history of psychiatric issues. I've been in therapy for much of my adult life because my mother was psychologcally unstable. I delayed having a child until well into my 30s, to be sure that I wasn't going to be like her. Many professionals assured me I was fine. I even went through a 3-year intensive training program to become a spiritual therapist. The program was headed by a well-respected man with a PhD in psychiatry. If I had psychiatric issues, they likely would have surfaced during that time. Not to mention, I had been seeing the acupuncturist for about 15 year. After all, I wasn't 20. By this time, I'm 44. In all that time, someone should have noticed something if I had psych issues. Thank goodness, I had all this background. In my vulnerable state, I could easily have landed in a psychiatric care facility simply because I didn't have the wherewithal to know better.
I fired PCP2 and was referred to PCP3, whom I saw in August of 2007. At the same time, my acupuncturist called me and said that several people had recommended a neurologist in Connecticut. I would have to pay out of pocket, but he would give me more thorough testing. My acupuncturist was absolutely positive that I had Lyme. I called that neurologist. He's been MyDoc, since August of 2007. He's fabulous. Still, this story continues into 2011 because of the system in which we operate. So, it goes on....
I should also mention that it has now been two years that I have been seeing doctors, complaining about memory problems, inability to organize, inability to complete a sequences of steps, days where I can't access nouns and other things. My intellect seems fine, but I can't function. In all this time, no one has done any cognitive testing. That won't happen until 2009 or 2010.
In the Summer of 2007, I had to shut down my business. It was tragically sad. I lost not just a livelihood, but a community. Many people around me couldn't deal with me being sick. I'm sure that some figured if a doc said you're having a breakdown, you probably are. I lost a dear friend, who had been my business partner. I kept saying I was sick and he kept saying I just couldn't handle stress. I kept saying, "something is happening to my brain. I can't remember stuff. I can't organize myself. I'm not sure what I'm doing half the time." (I used to be nearly OCD and was known for being a whiz at creating systems) He was simply angry that I wasn't doing a good job and he felt that I was misusing his money. Thirty years of friendship ended, for me, with this line, "I always knew you would go crazy." His mother was also emotionally unstable. As it turns out, I took precautions to be sure I would get care if needed, while he internalized that women go crazy or something. I've never wanted to speak to him again. What's the basis of that relationship?
As I noted earlier, saw MyDoc in August of 2007. I paid over $1,000 to have a thorough panel of tests run. I found out in that first appointment that I was not experiencing some dissociative disorder, as PCP2 presumed, I was having partial complex seizures. He spent three hours with me and took many, many vials of blood. Every one of them with explanations. And he assured me that he would do all in his power to get to the bottom of this.
In September of 2007, the test results came back. I was "equivocal" for Lyme on the ELISA and definitively positive on the Western Blot. I was also positive for Ricketsia. He immediately started me on a complex treatment of antibiotics and other things - which I could never remember, but he wrote down and my ex made sure I took them as assigned.
Ok, getting a diagnosis is scary and one can't say it's good news. But, hey, after 2 years, we were onto something! There was hope.
Only, I didn't respond well to the treatment. It was beyond Herxheimer. We tried for about 6 months, but I kept getting worse. I couldn't keep anything down. I was flat out in bed for those 6 months and in the last two, losing weight like crazy - 25 pounds in 6 weeks. I was having some kind of reaction to the meds. Um, like I was allergic to them. He kept trying to switch things up, but nothing worked. It was disheartening, to say the least, but we had to stop. We had to go back to the drawing board.
And I should mention, that my insurance would not cover anything past the first few weeks. Per them, I was cured. So, I'm earning no income, unable to function in the least and I have to pay for the medical care myself. Luckily, I was still on my ex's insurance - we postponed finalizing our divorce when I got sick, in case I needed the coverage - and we could use his Flexible Spending Account via work to pay for it. We drained that dry. Only to go back to square one.
I will also mention, that I did call GoodDoc to tell him about the tests and the diagnosis. His response: "You may have just been diagnosed with something that doesn't exist." Lyme disease doesn't exist? What does that mean? That's an abyss I would learn about later, but it's not for this story track. This track is long enough without it.
You still here? It's tedious isn't it? It goes on and on. My gawd, get to the point! How long is this going to take?!
Exactly. You're taking the time to read this and it's, what, 15 minutes. So far, it's been 2 years. 730 days. Of my life. Lost in a twilight zone.
In May of 2008, MyDoc determined that we needed to look more closely at my nervous system. I had had a nerve biopsy done at Mass. General on orders from the first neurologist and they didn't do it properly. (Something about improper sampling. That is, they cored out my flesh at the wrong relative locations.) He wanted to have those redone. Then he looked at the previous conduction exams and he was, well, angry. They put results on the first page as "normal" but when he looked at the details, it was clear that something was very wrong and I that needed higher quality examination. I cried when he suggest more conduction exams. He promised me it would be more controlled and much shorter.
Meanwhile, he would prescribe intramuscular bicillin to see if I could get some positive effects by bypassing the digestive system. Those started in May 2008. By early July, it was clear that I was seeing some cognitive improvement. My brain started to clear up and I was slightly more functional. This was meant to be a stop-gap. But we would continue them for a year until the insurance company retroactively denied the claims and sent us a bill for several thousand dollars.
What happened in that year? The nerve biopsy came back: "abnormal morphology". That is, my small fiber nerve endings are visibly - under a microscope - abnormal. MyDoc was sure that something was causing nerve damage. He explained about how many nerves we have in our digestive system and that sometimes when he sees digestive issues in patients with clearly neurologic symptoms, there's an auto-immune imbalance. But to make a diagnosis, I needed some very fine - read 'expensive' - tests done. He wanted me to see a specialist in New York City. The total costs of tests, doc visit and travel was going to be about $4,000. We were broke. Beyond broke. We aren't making ends meet at home. We couldn't afford the tests, because the insurance wouldn't cover them, since MyDoc is "out of network". These tests were very specific to neurology, so insurance wouldn't cover them unless a neurologist ordered them. We couldn't just ask PCP3 to do it. So, we continued with the Bicillin. This kept the seizures to a minimum and my head clear enough to be somewhat present for my daughter and to start reading and doing a little writing when I was up to it.
It was during this time that I discovered DailyKos. I had no idea how profound that would be for me. I mean, yes, it was dynamic and I could stay up to date on things political and have some, albeit electronic, interaction with the world outside my home. Whether I was functional for 10 minutes or 5 hours, at 10am or 11pm or 3:30am, it was there. And I enjoyed seeing the banter. I really enjoyed seeing people reach out to one another. As the economy tanked in 2008 and more and more people were talking about helping each other find jobs, a member here mentioned social networking. She reserved a Ning site and I responded to a comment and ended up helping to build Kossacks Networking. There, where groups were formed and more personal interactions were blossoming, someone - the magnificent Ellinoriane! - learned about my plight. She posted a diary on DKos asking people to make donations for my medical tests. I still cry, just to think of it, because within a matter of days this amazing community raised the money and I went from utter hopelessness to feeling so embraced by the universe. It was astounding. It still sounds unbelievable. But there it was. And in March of 2009, I went to New York City, escorted by a dear friend and I got my tests. How could I ever repay this "debt"?
A few weeks later, saw MyDoc and the results were in. I was diagnosed with Dysautonomia and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). These are well-established diagnoses with known treatment plans. Still, I would not receive treatment until the Summer of 2010. Why? Because my neurologist is "out of network". My ex has his health insurance through work and it is what it is. And now, I have a pre-existing condition so, there is no point in trying to find something independently. Besides, we couldn't afford it.
We tried finding an "in-network" neurologist to work with. I started calling in May 2009 and was given an appointment in September or October. Only the doc went out on medical leave and the appointment was postponed indefinitely. I finally saw InNet in January or February of 2010. I explain my situation. All the paperwork from MyDoc is transferred over. I tell InNet that I know I test positive for Lyme, but what I'm here for is to facilitate treatment of the CIDP. InNet insists on starting from ground zero and orders a full panel of blood tests and makes an appointment for March. In March, I have my first cognitive exams and then see InNet, who sits quietly reading through papers for about 10 minutes or so, next to me and then looks up and says, "You have Lyme Disease. And Ricketsia." I say, "yes, but I'm here to facilitate treatment for the CIDP." InNet says, "Oh, I didn't do any testing for that, let me think about what we need to do."
Again, sheer luck plays a role in my story. In the end of 2009, the ex's company lets us know that they now have an option in the plan. We can switch from HMO to PPO. Our "out of network" doc will only be covered 75%, but the treatments and tests would be fully covered. So, we make the switch. And the doc submits the paperwork. I had had the appointment with InNet already lined up, so I went to that as reported above, just in case it was still needed. But, in 5 months (May) treatment finally begins. I drop InNet. I mean, MyDoc remembers things about my father's health and the fact that I had lived in Brazil, even after not seeing me for many, many months. He would never forget what I came to him for and certainly would never forget to test me for that.
The one good thing that came of InNet's visit was the cognitive testing. Well, good, might be the wrong word. Useful. My scores were exceedingly low. It was further evidence documented.
Summer 2010 is five years after my first doc appointment. Five years of my life languishing at home. And it's not over.
In December of 2010, I have the most awesome appointment: my ankle reflexes are starting to respond! I'm not swaying as far as I was. I had realized a few weeks before that the sharpest pains in my feet were gone. Some of my friends who had seen me recently had said, "Oh my god, it's so nice to start to see the real you come back!" My energy levels were slightly better. I was less foggy. I can't begin to describe to you the feelings of profound relief and hope. It was like I had been released from a prison which previously had no keys.
I was informed that I could only expect so much from this treatment. I could expect healing of my peripheral nerves and some increased energy and, with that, some mental clarity. But I would likely not see much more cognitive improvement, as these meds don't cross the "blood/brain barrier". (The cognitive tests were re-taken and I had slight improvements, but as the doc said, "They were so low to begin with, they are still well below functional.") What we could hope for was that the continuing damage might be stopped or very slowed down as my immune system was righted and would stop producing the anti-neural agents which were attacking me. I would need to be on the meds for at least 2 years, possibly life. Different people respond differently. It's an IV infusion once per week. Takes about 6-8 hours. Could become less frequent, but I had to be prepared that this could be my life.
Ok. But, it's something. And maybe I'll get enough functioning back to be useful. Perhaps, even, to find a way to live independently of my ex, so we both can get on with our lives. We are really incompatible when it comes to household living. It would be so nice to be free of the grind. I'm staring to envision a life. Different than before, but a life of my own.
In March of 2011, my nurse informs me that she won't be here the following week because the insurance company has denied the claim for the treatment. I've not heard from the insurance company myself. They've given no reason at all. MyDoc is worried. I can see it in his face when I go to him. He says he knows this routine. These meds are expensive and they are going to do all they can to avoid them. He files an appeal.
I wait. And I decline. Seizures are back. I'm sleeping more. The burning intensifies. The pains in my feet return. I'm back to being so cognitively disabled that I can't remember how to get through a shower. I'm shaking more. My hair looks dirty all the time because I forget to rinse out the conditioner. That's when I've even remembered to shampoo. My fingers hurt so much I can't hold a cup or a fork. I struggle to type. But, then I'd have to have a coherent thought, anyway. Truth be told: I have nothing left to say.
I've said it all before. I've been here. This system works against me. Faulty tests, but insurance won't cover more unless that faulty test gives you a positive. Docs who would rather see their patients as crazy than dive in and figure things out. Insurance not covering things, not because they're not legitimate or usually covered, but because the only doc who would do the work isn't "in network". I've paid for health insurance all of my adult life. I've rarely needed to use it. But when I do get sick, roadblocks to care are put up all over the place.
And society doesn't care. I end up at home, tucked into a converted-attic bedroom. Docs can see how incapacitated I am and other than one freakish moment of being whisked off in an ambulance - scaring the bejeebus out of me, only then to tell me tritely that there was really nothing wrong - there was no sense of urgency. None. Months between appointment. Months. Imagine it. You can't work. You can't feed yourself. You can't care for your child. You can barely think most of the time. If you try to do something "normal" like take your child to a social event, you're immobilized for days. But it's not urgent. What does anybody care? Well, yes, I have people around me who care a great deal. I'm very, very blessed in that sense. But, what does society care? Life goes on. For everyone else.
Meanwhile, there is the national "health care debate". I watched in disgust. There is zero political will to actually transform our medical profit industry into a medical care service. If only we would all buy into those insurance plans, we'd be fine. I've had insurance. The whole time. Not one single thing has changed for me.
MyDoc's appeal was successful, to a degree. A few weeks ago, the nurse emailed me to schedule a treatment. Only it's not weekly. And it's a lower dosage. The insurance company, against the doctor's recommendation, is demanding that I be tapered off, regardless of outcome. They simply won't pay for it. I'm not sure how they justify this to themselves. But this is very expensive medicine. I learned that it costs about $11,000 (yes, thousand) per treatment. (yes, each dose) That's a mighty powerful incentive for them to wiggle out of covering. Because what I know now with so much clarity, is that my medical insurance is not designed to insure that I get the medical care I need. It it is designed to insure that the company makes a profit for it's shareholders.
We don't know, yet, how this lowered dose will impact the effects of treatment. It's too early to tell. My third dose is today. What we do know is that by tapering me off, there is no way I'll get the maximum impact and it is likely I will regress, as we just saw, when it is ended. So, I have a partial reprieve. A little less languishing for a while, until I'm back to full on languishing. Oh. Another note: my ex was laid off his job. With our not-so-handy system of binding insurance to the oh-so-unreliable workplace, my insurance coverage will expire on June 30. We can't afford to keep it going when unemployment will pay him less than half what he was earning. Keeping the house will be a miracle.
Though, I tell this story here - all of which has been told before and I'm sick of telling - I really have nothing to say. Here I am. Sort of.
For 42 years, I lived a full, vibrant life. Many people tell me that I've had more experiences than 5 people combined. So, perhaps, the way it works is that I've had my life and that's that. I mean, why do I need more if others haven't had as much? I suppose I should be thankful for the life I had. It does get boring living on memories, though. And realizing that my daughter may never know the real me. The healthy me. Six years and counting, I languish. I struggle to see if there is something I can do. Anything that will make me a useful member of society. Even better if I could get paid for it. But what I really want; the dream I can't let go of; the vision that cries out to me in my despair; is my life back. The life I'm supposed to have. That one where I take my daughter to El Salvador with my friend to meet and work with people in devastated remote villages there. To take her to a Broadway show in NYC. Or better yet to a production in London! To show her my apartment in Leblon (Rio), to teach her how to scuba dive. To sneak into Tibet and sit in the Himalayas and breathe. To return to Montsegur and commune with the spirits of the last Cathars. To write my novel. To be a fabulous knitwear designer. To finally sing with a band where I co-write the lyrics. To see Rumi's dargha in Turkey. To go to Netroots Nation! I want to have tea with people in Brazil and Egypt and Finland and The Carpathians. I want to do my part to generate a peaceful and sustainable human existence.
I'm not done. I mean maybe I'm supposed to think I drank my fill in those first 42 years and should just accept whatever I get. I've had six years for that message to sink in. I mean, that is the message of this system, "Oh well." (irony noted.) But it's not taking up residence. I still want the rest of my life. There's no sense in whining about it though, so I stopped writing, because there is nothing else to say. I don't want a life of languish. I want a life of lushly living.