KosAbility is a community diary series posted at 5 PM ET every Sunday and 8PM ET on Wednesday. It's a gathering place for people living with disabilities, our families and friends, and interested others. Volunteer diarists offer specific knowledge and insight on a topic they know intimately. We invite you to comment on what you've read and/or ask general questions about disabilities, share your own knowledge, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Our diarist this week is MsGrin, who asks that you please take the poll at the end of the diary.
Before Lyme Disease
"You're not sick, you're young."
That was the very first time I was challenged about whether or not I was correct that my body was failing my needs. I was twenty-five, and I was attending a meeting of Mended Hearts, a support group affiliated with the American Heart Association because I was freaked out about the prospect of upcoming heart valve surgery.
I was told my surgery would be needed anywhere from six months to ten years hence. My family was 3000 miles away. I didn't know what my heart condition would mean with respect to the rest of my life.
All I remember about the woman who told me I wasn't sick was that she was white-haired and looked like a grandmother. I so envied her. I presumed she had a life behind her she could point to with a family close by and children and grandchildren. I did not know if I could look forward to the same. To her, illness came with age and brought misery. To me, illness had hindered my youth and by early adulthood was needing intervention. Illness might well be my companion through life - if I made it to her age, I could be living with the complications of repeated surgeries and dependent on bloodthinners with all of the issues they can bring. Her words mocked my reality. I smiled at her and ended up leaving the event more alone than I felt when I arrived.
As it happened, I was actually sick. The surgery came after six months and I was told it was none too soon. And then two more surgeries three and a half years after the first. And a pregnancy which ended in disaster when my insurance company denied medical care called for by my high-risk obstetrician - I was dying, my baby died first... the miscarriage fortunately had me in the hospital so that they were able to get me into my fourth valve replacement surgery when my heart went into rhythms apparently inconsistent with life.
I hate sounding dramatic, but it was. Four heart surgeries in five years, a ton of complications, several with serious neurological components (strokes and periods without oxygen); long-term memory issues, short term issues, confusion, lost about a third of my IQ points. It was a struggle. When Social Security Disability kicked in, it was not because of how life-threatening my cardiac situation had been intermittently, it was because of the neurological issues which have waxed and waned over the years.
Getting Lyme
In March 2009, I'd been sick to the point of being disabled for nearly five years before I was tested for Lyme disease and my infection discovered. At first, it seemed likely that my infection took place at the onset of the full illness when I had had a medical accident and then never fully recovered. I'd had complications from an outpatient surgical procedure which resulted in hemorrhaging internally half my blood volume. That event was pretty spectacular, riviling the earlier emergency surgeries. My loose count culled from hospital records and family recollection (from those hospital stays where I don't have the full breakdown of what went down) has me having received upwards of 80 units of blood over the years. Blood banks don't test for Lyme disease - did I get infected from liquid that also saved my life? I now think it's likely not the case... it has not yet been proven that Lyme is transmitted through transfused blood, and a more likely event eventually emerged from memory.
It was 1993, back when I was in grad school in the D.C. area, there was a morning I woke up when there was no hearing in my left ear. None. There was nowhere to call before business hours, so I stopped into a pharmacy along my commute to work - the pharmacist gave me ear wax removal drops. The drops were wet and cold but did not do anything about my hearing. I got in to see my primary care doc a few hours later, and he scheduled me for a hearing test at the hospital right away. At 90 decibals, I could feel some pressure in my ear, but there was no sound. I was admitted to the hospital for the weekend to receive IV steroids every few hours and something called 'carbogen therapy.' No change in the short term (other than wild visual hallucinations from withdrawal of the steroids when I left the hospital - my presciption of orals didn't taper them very well), but about four months later, sound began slowly creeping back in. I have my hearing back now - it's distorted a bit, but having lived with the lopsidedness and disorientation of not having hearing in stereo, I am extremely grateful for what I've got.
Sudden, massive hearing loss can be a symptom of Lyme Disease:
Isolated monolateral neurosensory hearing loss as a rare sign of neuroborreliosis
I've got issues throughout my body. You've read above about cardiac and neurological issues. Learned after the medical accident that my kidneys and liver and a bunch of other sites are filled with cysts just to keep things interesting. In the year leading up to the accident, a number of things began becoming more and more problematic. Brain fog creeped in like the weather. Exhaustion so strong that I'd fall asleep in the middle of conversations. Dizziness and numbness, especially after sitting a long time and then standing. I'd stumble and fall for no apparent reason. I'd have spells of disorientation where I didn't know where I was or what I was doing, seizure-like events. The dizziness could get blinding when I'd drive, I'd lose sense of depth-perception when my eyes wouldn't sync up - it was scary enough that I went to the ER once - they did a CT scan and found nothing. Although she did not let on to me at the time, the neurologist I saw to follow-up on the ER run apparently thought I was making it all up.
Dr. Porter says you don't need to see her, you need to see a psychiatrist.
(Translation: You're not really sick, you're just crazy.)
All of the issues I described above became compounded greatly in the aftermath of the bleeding incident. I was weak enough that I didn't stand for over a week, and was released to a rehab hospital to learn to walk again. The fatigue and dizziness and brain fog were no longer peripheral illness, they were part of my state of being. I dreaded the disorientation spells because it would take so long to remember who I was again afterward. It took all of my focus and energy to think. The incumberances which had taken up residence before the accident had somehow become the property owners when I was unconscious - now I was a mere tenant in my own body. I've been struggling since to make a full comeback.
Dr. Porter had apparently marked in her records that my reporting on my dizziness was just nuts - the discussion with her receptionist quoted above was when I had a referal to see her so that she could send me on to a neurosurgeon for a consult on the cyst on my spine. I asked the receptionist if one needs to see a psychiatrist to get the surgical consult referal, and I was asked to hold before they did agree to see me.
Doctors doubting the reality or severity of my symptoms were often far less pointed than Dr. Porter. If what I described didn't make sense, it was ignored and often times not recorded in my medical record (I've read thousands of pages of my medical records now, so I know). I remember describing how I couldn't make my body, well, hurry, how I felt like I was walking through deep water. I got some raised eyebrows with that. OK, SO WHAT DOES ONE SAY WHEN ONE FEELS LIKE ONE IS FEELING LIKE WALKING THROUGH WATER, WHAT DO YOU TELL THE DOCTOR SO S/HE DOESN'T THINK YOU ARE CRAZY?! When periferal neuropathy testing did not show why I was experiencing numbness in my hands and feet, I heard it again:
Perhaps you should see a psychiatrist.
That I had profound depression after the bloodloss and aftermath easily confirmed for doctors that my issues could have been entirely delusional.
It was all in my head of course, it was just neurological rather than psychiatric. What is documented in encephalopathy and white matter disease and other stuff I'd have to look up. There has been a spirochetal infection in my brain and central nervous system causing dysautonomia and confusion and numbness and dizziness and even the depression. Being told I was crazy over several years had a demoralizing effect - I tried to work around it and through it, and even though I had brought myself back from near-death experiences previously (suffice it to say it takes a lot of focus and dedication for a lot longer than seems reasonable), my mending had been long stalled before the Lyme diagnosis. I had accepted that my life would be a thin shaddow of what it was before. Perhaps that is when the depression lifted, but the other symptoms remained.
So, the theory is that I had Lyme in my system for quite some time, but that my immune system was able to keep it substantially in check until said immune system took a hard enough hit (with massive blood loss) that it couldn't keep the infection in check any longer. At the time, I was being seen at a hospital which considers itself one of the very top facilities in the country, and yet no one had a clue what was wrong - literally, it was five years and twenty-four physicians before anyone recognized my symptoms and tested for Lyme disease. By the time I was diagnosed, I was in another state, in a city without a major medical center. What made the difference? I had doctors who knew how to listen and to do enough sleuthing that we could rule out what wasn't wrong and get closer to what was.
I've been receiving treatment for awhile now - I'm somewhat better, but nowhere near recovered. The aftermath of the adventures in my brain includes my not being able to read a map to save my life at this point, and I can still only retain one or two steps of directions in my head before everything turns to mush. In other ways, my brain works great, so it takes a lot of testing or explaining to get folks to understand where things all fall apart. I'm more anxious and I fluster more easily now.
Lyme is an incredibly political disease. I believe it is so political that even though CDC believes there are likely 200,000 new infections annually in the U.S., physicians don't believe what they are seeing when they see it. I had regular medical care for five years and after an early history of major medical issues, so I've become a pretty good reporter of my health history and current symptoms. SOMEONE should have recognized symptoms of neurological Lyme disease and tested* me before it dragged on for so very many years. The physicians I see now who are treating me are so afraid of having their licenses challenged that they conceal that their practices emphasize Lyme disease - it's no wonder that most physicians do not 'see' Lyme. Patients like me languish undiagnosed for years because of politics in medicine.
*the falibility of testing for Lyme is a whole 'nother issue better discussed elsewhere.
I need your help: please vote in poll.
I have proposed a panel discussion for Netroots Nation on the politics of Lyme disease - the panels spots will be awarded in about a week or so, so I am looking for last-minute support that this would be a well-attended discussion.
I turned for assistance to the head of a very prominent association for those working with Lyme disease, and was told that if it's likely that we can get 200 people to show up at a NN10 panel on Lyme that they would arrange for the session to be an actual debate between a respected member of the Infectious Disease Society of America (IDSA) and a former head of the International Lyme and Associated Diseases Society (ILADS) regarding peer-reviewed, published science about the disease.
EVERYONE on Daily Kos LOVES evidence based medicine, yes?
Daily Kos has been an invaluable resource for me in finding other people who have (or have recovered from) the disease to learn from them. More than just me, a diary series a year ago now helped at least two other Kossacks make sense of their long undiagnosed symptoms and were tested for Lyme and found to be positive for the infection. Please vote in the poll to show your interest in learning more about Lyme Disease.
Thank you,
MsGrin
For more information on neurological Lyme disease, please see Pamela Weintraub's piece in Psychology Today: When physicians miss the diagnosis, patients can be stigmatized with psychiatric labels