March 29, 2010
Question: What are the symptoms of Lyme?
Answer: What ISN'T a symptom? See "My Story" on the top left corner of my main page for all symptoms, here are a few of the basics:
• bone-crushing fatigue (as in sometimes you can barely make it to the bathroom or down the stairs)
• chest pain, inability to breathe or get oxygen to Lyme-infected heart and lungs
• dental & jaw pain to the point you cannot eat anything cold or hard
• vertigo and dizziness that make you feel like the world is going up, down, swirling around, and someone gave you a bad dose of some hallucinogenic drugs and the experience never ends
• weakness
• excruciating joint, and muscle pain EVERYWHERE (to the point you cannot turn a doorknob or type a word because your wrists hurt so badly and it feels like someone is knocking a 50 lb. hammer directly onto your neck and spine)
• electric neuropathic pain that feels like you are being electrocuted
• migraines, headaches
• nausea, stomach pain, organ pain
• auditory and visual hallucinations
• extreme noise and light intolerance (think no music, sunglasses even at night, inability to watch TV for long periods of time)
• Rashes
• memory loss, complete and utter loss of cognitive ability (as in I put scissors in the freezer and got lost when my dad dropped me off at Whole Foods once, IN the store)
• short-term memory loss, confusion, word-finding difficulties, major visual disturbances (blurred vision, even had a herx so bad where the entire house was 'cloudy' and covered in fog and all I could see out of my eyes was a thick fog vision for 10 hours straight - scared the crap out of me),
• numbness and tingling in toes and fingers, inability to feel parts of your body at times
• major depression, anxiety, psychological manifestations of all sorts, panic attacks, irrational rage, and the list goes on...
Question: REALLY?!?! You got that disabling disease and all that from a tick?
Answer: Um, yes, a tick. If the CDC and medical community would just fucking get on board already with the extreme seriousness of this disease, people would know that! Those little fuckers (ticks, I mean) can ruin your life, not just for months or a year, but YEARS. I know people who have treated and been sick over 20 years. I don't plan on being that person, but late-stage Lyme disease is brutal because it affects your physical, cognitive, and psychiatric faculties. And the treatment - well my doctor calls it chemotherapy - it lasts not months but years. Years of painful rollercoasters filled with ups, downs, ER visits, family strife, and financial ruin.
Because it is the widest growing infectious disease in the country, it has been speculated that some fleas and mosquitoes may now carry it too. Not to freak you out, just sayin'.
Question: What do you do all day? (I'm sorry but I HATE this question).
Answer: Seriously? Oh I sit around painting my toenails, eating bonbons, and ordering my butler Gerard to get me some gluten-free banana bread and Pelegrino. In actuality, I spend most days now in this order:
Eating
Taking some of my daily 80 meds and supplements and herbs
Infusing my intravenous treatments and being attached to my IV pole for 2-8 hours per day
Eating
Sleeping
Getting up to Infuse meds again
Eating
Watching some TV if I can handle the noise and light
Frequently spending too much time on my computer in hopes that I'll be reminded of something or someone connecting me to my old life or delivering me a laugh.
Staring out the window and crying and wondering how I got here and how the world is going on without me.
FIGHTING the MAN and DEALING WITH SO MUCH BULLSHIT it's RIDICULOUS - fighting insurance companies who have denied almost all of my treatment not to mention hundreds of other claims, organizing medical records, reviewing labs to make sure organs are in working order (You'd think doctors would do this, but often they miss things), contesting my long term disability benefits appeal with my former LTD insurance company through my employer, gathering documents for Social Security disability applications, filing medical records in my 8 medical records folders, ordering supplements, putting pills in my 6 pillminders (yes I have 6), taking detox baths, fighting the people who are supposed to be giving me disability payments with appeals and getting letters from doctors, affidavits from family members, friends, and colleagues to support my application, raising awareness from Lyme, trying to get a fundraiser going for my treatment, scheduling numerous appointments and holistic treatments, calling my doctor's office twenty times a week to get some copies of records or labs, doing weekly blood draws (50 this year alone), getting my home health nurse to change my dressing, asking and answering questions about Lyme from Lyme support group members.
Also, if you see my "My Diet, Supplements, and Routine" page at the top left of the blog, you will see that consuming that many pills and concoctions separated from meals and other meds and supplements literally takes up 3/4 of the day.
On good days, I go out for a meal with a friend, have lunch, do a short walk, run an errand, or enjoy sitting outside.
That is of course when I'm not don't feel like the ground is shaking, or I'm crying on the floor or too nauseated to sit up straight. Sometimes I spend hours staring out the window in a drug-induced haze trying to keep my balance b/c vertigo will knock me down when I walk and dizziness and migraines and crippling fatigue rock me so hard that I cannot move and just stare at a wall or out the window and wonder what real people do all day.
Honestly, once I was on an airplane waiting for a wheelchair, watching all the passers-by walk by me, carrying luggage, and it was SO foreign of a concept to be able to just get up and go and carry something that weighed over 10 lbs. I was amazed, as if I were watching aliens. How did these strange creatures move
so FAST and with such EASE? Yet, I used to climb mountains on my bike for 4 hours every weekend or log 8 hour days on my snowboard, or run on 4 hours of sleep and still get to work and then chase my nieces afterwards.
Question: What do the doctors say? When are you going to be better? (Again, I know it's out of concern and love that people ask these questions, but this one eats a part of my soul every time it is asked).
Answer: Bottom line: nobody knows. 2, 3, 4, 10 years, who knows? When will I be 100% fully returned to the old Mona? Maybe 1 or 2 more years. That's with 2 years of treatment behind me. And years before that wandering from specialist to specialist seeking an answer to something (that we now know as late-stage Lyme) I KNEW plagued me but that most doctors dismissed (as they often do) as 'being all in my head.' I never believed one of them and kept going, from UCSF to Los Angeles specialists to the University of Michigan, and finally found someone who knew how to address the appalling and massive failures of mainstream medicine to treat people with chronic illnesses and especially late-stage Lyme. Ah but that's another post, that would be
500 pages.
So EVERY Lyme patient is different. You know how you learn in grade school that NO 2 snowflakes in the world are alike? It's the same with Lyme. My second Lyme doc told me NEVER to compare myself to another Lyme patient (easier said than done) because the symptoms we each manifest, the way we each respond to treatment, and the way we heal is SO different. He's seen people better in 2 years and others sick for 10 years. Also, nobody knows how long we've had Lyme (I know I got symptomatic around late 2005 but who knows when I was actually bitten?). We all have different immune systems as well.
I also firmly believe DIET, that emotional well-being, meditation, integrative treatments (acupuncture, energy healing, EFT, reiki, IMT, etc.) and the right mindset are as important if not more than the drugs, herbs, and supplements themselves.
I don't think mind and body are separate. They are one entity and deeply intertwined. I think it's crucial to adopt a mentality of "Im not a victim" and have some core beliefs in something, ANYthing (I'm not talking about God only, even just the Universe, a tree, a flower, a special person in your life, just
some deep inner fire that burns inside your heart and soul even on days you feel like the treatment or disease symptoms are going to literally kill you). That persevering burning flame inside you that KNOWS you are going to get through it, that sees this disease or any hardship as an OPPORTUNITY and a journey that is here to teach. Don't get me wrong, sometimes that flame is DIMLY lit, and I need someone to rescue me out of that pit of utter hell and tell me I will get through that dark tunnel. But it's there.
So
the answer: I don't know when I will be better. I hope soon because I am pretty damn tired of this on many days. The path of healing with this disease is not normal like with others - it is
non linear. NON-LINEAR. This is hard for almost EVERYONE to grasp, my parents, friends, non-Lyme literate doctors, and even me.
It is a rollercoaster ride from hell. Torture, hell, herxing, then a good day, then more torture, then just some bad days, then a few good days where you appreciate a 20 minute walk, and a day in the sun with no symptoms, then an hour of crippling exhaustion, and on and on it goes.
Question: Can the doctor give you anything to take for that ____(fill in the blank with awful symptom)?
Answer: Not usually. Nothing takes away certain symptoms - you have to ride it out. Some of them are bearable, but some of them are crippling and devastating and make you feel like you're dying, and if you're not, you WANT to be dead.
If there is anything that DOES ease a symptom - I have it. Narcotic, sleeping pills, every horse tranquilizer on the market, supplements to ease numbness in my feet and hands, tremors, whatever. Most of these things cannot be controlled by medication but certain things can help decrease inflammation and aid in detox of the cytokines produced by 'herxing'/'die-off' in the body. That is why we Lymies take SO many supplements and pills and all you normal people think we are supplement and pill junkies. We are not. I don't know any Lyme patient who takes LESS than 30 pills per day, sadly.
I know people just want it to be 'easy' on me and they wish I could just 'take something' to make the herxing and treatment and disease more bearable. But it doesn't work that way, unfortunately. It's their way of wishing things could be easier, and that I could get better faster. But speed is not the name of the game.
It's very caring of my friends and family to wan to ease my pain, but it's also a reflection of our society. We want everything to be QUICK and PAINLESS. Get it over with NOW. Get you better FAST. Take a pill and numb yourself out. Believe me, NOBODY wants my health back more than I do. But our American society doesn't see the strange blessings that come in disguise with a severely disabling illness or a life-changing event that is initially perceived as disastrous, horrible, "totally sucky." Anything event, be it severe illness or something else, that is not a good thing is perceived as total failure by some. To me, it has been an eye-opener. This doesn't mean there are not days when I want to jump off Golden Gate Bridge or scream or cry from all the fear and pain and angst that accompanies this horribly scary disease. But, I believe these things come to us to teach us something. And if we don't look at them as OPPORTUNITIES to change ourselves and our lives, then we have missed the blessing. And I've had enough health issues BEFORE I got Lyme that could have taught me this. I almost lost my life when a chiropractor dissected (tore) my vertebral artery in my brain and I was almost paralyzed and close to a possible stroke or death. Luckily, the Big Man above was watching out for me and saved my life. I didn't learn anything from that incident. I was on blood thinners (usually reserved for the over 60-population) and on high doses of narcotic painkillers for for 8 months. I had panic attacks, severe migraines, and other issues with my head and neck for 6 years following. It traumatized me and to this day, I am nervous when someone touches my artery/back side of my neck on the right side. I don't feel I took anything away from that experience that almost took my life. I'd be much happier had it never happened.
So you see, I think something was trying to get through to me. Some way of realizing a new way of living, and apparently that dissected artery and 7-day ICU visit and near death didn't do the trick. So now I have a disease that tortures and plagues me for over 3 years now. And yet, I've changed so much in the last 2 years, I almost feel I would never want to live the way I was before.
Ok, I digress. Back to the story about when am I better?....
No human can feel like they are improving when going through so much up and down, but we are. And the best judges of our progress are our loved ones and those who see us, because they can see when vitality returns to us. And I am lucky enough that I am very in touch with my body and can feel it. I can feel vitality returning to my body and healing occurring (sometimes) as I feel deathly ill from a treatment. Most importantly, I know what the mind believes, the body achieves.
So I MUST KEEP BELIEVING.So the long answer is...I don't know when I'll be 100% Mona again, but the more I am asked, the more I am reminded that I am NOT yet back to 100%. Each step forward, and even the ones backwards after that, I must believe, are each a step towards regaining a piece of me, whether walking or cooking a meal or being able to go to dinner or even drive is a huge feat for me and the happiness I feel from these small feats is indescribable. Gratitude to feel normal.
And I KNOW I will be jumping off cliffs on my snowboard, riding my mountain bike, hiking, happy houring, surfing, working, and generally spazzing out into the Mona that I once was. So why not enjoy where I am and watch the world and prepare myself to jump back in? (I will HAVE to read this profound posting on a bad day where I'm miserable and don't have any clue why this is happening to me. ha)
SPECIAL REQUEST: : Please don't say "oh what you're going through is so awful and sucks so bad..."
I always cringe when people say to me, "Oh that sucks what you have to go through" or "I feel so sorry for you." At the beginning of this journey, I felt sorry for myself. I was angry. I hated the world, watching people my age go by on their bikes, scooters, laughing, drinking, going to bars, concerts, hiking, working, while I sat glued to a couch and sometimes pressed to the floor in agony. I welcomed sympathy.
Then I was depressed, grieving the loss of what felt like SO much time of my life. Grieving all the things I could NOT do, could NOT be a part of, losing all this time to develop my career and gain experience as a civil rights and human rights lawyer, so badly wanting to make a difference when I could barely make a plate of breakfast and watched people briskly walk to work in their cute suits and heels outside my window. Then, on days when I felt better and could go to brunch with friends, or even make it out to a movie and a little jaunt up Fillmore street, I was exhausted. Back into bed, and my brief flirtation with real life was a cruel tease. It wasn't fair.
Then over time, I came to a place where I never looked back and never felt this was unfair. I don't feel sorry for myself and I don't want others to feel badly for me. It doesn't suck that I have to go through this; it's a blessing in disguise. Sounds crazy, right? It is a simple dissolution of form (thanks Buddha and Eckhart) of ALL my material identities, that
most people, especially those my age, will never experience in their lifetime. This dissolution of identity - the Mona who can volunteer, work as an attorney, be a civil rights advocate, sit on the Board of my nonprofit, mountain bike, snowboard, surf, go out drinking or salsa dancing, cook meals for dinner parties, even walk more than 10 minutes with a friend in the park, go to concerts, twirl my nieces in helicopters over my head, chase them up the stairs, flirt with boys at bars, that is all gone.
I lost my physical and cognitive abilities, then gave up my job, my car, my apartment, my city, my life. My physical, cognitive, and even emotional faculties disappeared in many ways. So what was left?? Nothing??
Underneath all that with NO material identity to grasp onto, who was I?
Was I nothing?
Certainly felt like it. But no, I was me. Mona, just me, just my love in my heart that I still had to give, my personality, my laughter, my compassion, just me. And that - that which is truly real, which is truly ME - can never be taken away, even by a ravaging disease. And the gift in all this is that, through relinquishing these identities (albeit very involuntarily), I was able to come in contact with the real me. And most people don't ever get a chance to see that person, because nobody will quit their job and their lives and stop exercising and seeing friends and go into a hole for years of introspection, except those in religious retreat like a Buddhist monk or a nun or Hindu sage who go off into a cave or under tree for years.
I’m guessing most people will not relinquish everything voluntarily. Something I heard on the PBS documentary,
The Buddha, recently: "There is no knowledge won without sacrifice and this is one of the hard truths of human existence;
in order to gain anything you must first lose everything." .
Ahh, thank you Buddha!!! Finally, some
meaning to the desolate, maddening, incredibly painful and also enlightening journey I have been on. I’m have been studying and practicing many aspects of Buddhism for the last 5 years, and I wonder whether this journey, ironically, is a hard but real way of learning this very tenet.
So, this gift, and YES, it is a gift, has been a blessing in disguise. My parents don't get this and I know they will read this and still not get it. I have come from my very own tree(most of you who me know this). I know many friends who get this (they're from San Francisco after all!) but even some who don't. And that is OK. Not everyone has to understand what this blessing in disguise is all about - it is for me to know in my
heart and in the
core of my soul. To carry forward through my daily actions, and through the work and life I will resume once I am better. I hope I can impart some wisdom to others in hard times, be it illness or other challenges, and of course save the entire world when I am better with advocacy and my law degree and enjoy limitless days of fun, but that will come with time. For now, it's me, myself, and I.
Again, I have digressed. I realllly have trouble keeping things short. But that's me!
