What a great response to my last post! I'm flattered by and grateful for the comments it received. "We're Misunderstood" got the highest number of comments of any of my past posts--by a long shot. Thank you to each and every one of you who took the time to read my blog, and a special thank you to those who went a step further and commented.
While I do read every single comment, as a general rule I do not comment back on my blog. Many of you sent me private e-mails and messages via Facebook, and in those cases I always, without fail, respond to you directly. So, if anyone left a comment and wants to hear from my directly, you can email me at lymetolimeade@gmail.com or add me as a friend on Facebook: "Leila Romi" are my first and middle name.
Thanks again for your thoughtful comments, and I hope you continue to read my blog for more candid tales and up-front updates. Healthy wishes to all xo
Saturday, April 30, 2011
Sunday, April 24, 2011
We're Misunderstood
It's hard enough having chronic Lyme; it's even harder dealing with critics whose dissent is based in ignorance. If you haven't either lived with Lyme or studied its effects on people (or read my blog!), then you probably shouldn't protest our sub-culture, because you're being both unintelligent and unkind (not to mention closed-minded).
When I first found out I had chronic Lyme, and posted the news to my Facebook page, I expressed my frustration over the lack of Lyme-literate doctors who take insurance. Moreover, I stated that the standard fee for an office visit at a Lyme specialist was approximately $500. A friend, who clearly has zilch, zero, nada understanding of our illness posted a comment stating that I didn't need to see a specialist.
(I tend not to get angry over minutae; a major motto in my life is "Pick your battles." I ignored the friend's comment. Not a big deal.)
Now, months later, after I statused on my Facebook page that I'd spent the day in bed, the same friend left a comment alleging that I am not taking care of my health and suggesting that I get out of bed and be active in order to combat what he perceived as depression.
He was wrong on all accounts. For one, I am as active as I can be while combating a major (major!) illness. (Do people still not realize this is akin to having AIDS? Do people not realize I'm not exaggerating when I say my brain is infected?) In addition to staying pretty busy and productive in spite of this illness, I'm not suffering from depression. And I'm taking pretty darn good care of my health, by eating wholesome, nutritious foods, taking all my medications and avoiding stress. So whatever impression I've made on him is wrong.
Part of me has to question if it's my fault--that I'm not communicating things well, and that's why people make hasty judgments. Still, people should not judge what they do not understand. And the truth of the matter is that some days--very few, but they still exist--I spend most of the day in bed. Not out of laziness, depression, or any mental deterrent, but because I'm so physically ill that I can't get up and do anything. Changing my attitude and trying to be productive, as the friend suggested, isn't applicable because, well, I'm not his teenage children (so maybe he shouldn't talk to me like I am).
If you know me at all, you know that I'm not a chronic whiner. My "pick-your-battles" motto applies to venting my frustrations, too. I overwhelmingly avoid excessive complaining on my Facebook page, but every now and then I'm gonna say just how exhausted I feel. That's because I'm frank. Very, very frank, honest, bold. But if you knew the half of what I'm experiencing, you'd see my Facebook page as surprisingly uplifting and positive. So, if you know me--if you really do know the person that I am--you know I'm an optimistic, honest, frank, and soulfully deep person.
Another friend recently criticized me and essentially the entire Lyme community for labeling ourselves "Lymies". His claim is that we are choosing to identify with the disease, rather than blend in with the rest of the world. "I'd hate to be called a Cancerie if I had cancer," he said.
Oh, boy. It's time for Mama Leila to do what she does best: Explain. Stay Calm. Be Patient. Re-Explain if Necessary. Not Get Mad. (Alright, maybe it's not what I do best, but a girl can try.)
So, ahem, here's the thing about us Lymies.
We need our community of fellow Lymies. We are walking a very lonely, thorny path in our lives, and at every kickback on this path there are mountain lions and snakes and porcupines ready to jump at our feet. Our disease has no known cure, only treatments. Our disease is misunderstood in the medical world, with medical doctors and the Infectious Disease Society of America denying the existence of chronic Lyme and rebuking its treatments.
You can't compare us to cancer patients or "canceries". Although they suffer greatly, and I don't mean to minimize their plight by saying this, at least they have the wholehearted sympathy, support and understanding of the world behind them. The very large majority of people don't have a clue what Lyme patients endure, and when given the opportunity to learn about it, they generally don't care to, until it's affecting them or a loved one. People still ask what the big deal is about Lyme and assume it's easily treated with antibiotics. Nobody questions the severity of cancer or AIDS.
Which brings me to my next point: We call each other Lymies because we want our voices to be heard. We want to identify with Lyme disease, because we're desperately trying to publicize our plights, and get our friends and colleagues who unknowingly suffer from Lyme in silence to see doctors. The world needs to listen to us. We're gonna keep calling ourselves Lymies and shouting about this disease because we care. If we didn't care, do you think we'd be so obsessed with Lyme? Don't mistaken our chatter surrounding this topic with narcissism--narcissists, by definition, do not care about anyone but themselves.
Ultimately, our name forges bonds between us. We understand each other's asinine quirks and symptoms and side effects because we too endure them. Most of us have spent many years being labeled hypochondriacs or freaks by doctors, and not fitting in with the world at large. So it's a heart-warming relief to have people to turn to when nobody else understands, not even the very doctors whose goal in studying medicine was to help sick people.
I know many of my friends silently question why I talk so much about Lyme disease. For each of the three or four people who've shared this opinion with me, there's ten or more that won't say it to my face. In fact, yet another friend just asked me why I and my other Lyme friend spend so darn much time talking about Lyme. I hope this blog helps them to understand.
And if they still don't want to hear about Lyme, they have the option of tuning out when I write about it on Facebook. It's not gonna stop anytime soon, folks. I plan to keep talking about Lyme disease. Sorry if that's a buzzkill in your martini- and manicure-filled day. At least you can have that martini and manicure; I can't have either. But I'm not complaining. I'm a warrior!!
(For the record, it's not all I talk about. I still talk about kitties, music, current news, and a plethora of other interests. Lyme hasn't swallowed me whole.)
But still, we're not gonna shut up. You'll start hearing more about Lyme disease as it becomes more mainstream in the near future. So tune out or turn up the volume, it's your choice.
When I first found out I had chronic Lyme, and posted the news to my Facebook page, I expressed my frustration over the lack of Lyme-literate doctors who take insurance. Moreover, I stated that the standard fee for an office visit at a Lyme specialist was approximately $500. A friend, who clearly has zilch, zero, nada understanding of our illness posted a comment stating that I didn't need to see a specialist.
(I tend not to get angry over minutae; a major motto in my life is "Pick your battles." I ignored the friend's comment. Not a big deal.)
Now, months later, after I statused on my Facebook page that I'd spent the day in bed, the same friend left a comment alleging that I am not taking care of my health and suggesting that I get out of bed and be active in order to combat what he perceived as depression.
He was wrong on all accounts. For one, I am as active as I can be while combating a major (major!) illness. (Do people still not realize this is akin to having AIDS? Do people not realize I'm not exaggerating when I say my brain is infected?) In addition to staying pretty busy and productive in spite of this illness, I'm not suffering from depression. And I'm taking pretty darn good care of my health, by eating wholesome, nutritious foods, taking all my medications and avoiding stress. So whatever impression I've made on him is wrong.
Part of me has to question if it's my fault--that I'm not communicating things well, and that's why people make hasty judgments. Still, people should not judge what they do not understand. And the truth of the matter is that some days--very few, but they still exist--I spend most of the day in bed. Not out of laziness, depression, or any mental deterrent, but because I'm so physically ill that I can't get up and do anything. Changing my attitude and trying to be productive, as the friend suggested, isn't applicable because, well, I'm not his teenage children (so maybe he shouldn't talk to me like I am).
If you know me at all, you know that I'm not a chronic whiner. My "pick-your-battles" motto applies to venting my frustrations, too. I overwhelmingly avoid excessive complaining on my Facebook page, but every now and then I'm gonna say just how exhausted I feel. That's because I'm frank. Very, very frank, honest, bold. But if you knew the half of what I'm experiencing, you'd see my Facebook page as surprisingly uplifting and positive. So, if you know me--if you really do know the person that I am--you know I'm an optimistic, honest, frank, and soulfully deep person.
Another friend recently criticized me and essentially the entire Lyme community for labeling ourselves "Lymies". His claim is that we are choosing to identify with the disease, rather than blend in with the rest of the world. "I'd hate to be called a Cancerie if I had cancer," he said.
Oh, boy. It's time for Mama Leila to do what she does best: Explain. Stay Calm. Be Patient. Re-Explain if Necessary. Not Get Mad. (Alright, maybe it's not what I do best, but a girl can try.)
So, ahem, here's the thing about us Lymies.
We need our community of fellow Lymies. We are walking a very lonely, thorny path in our lives, and at every kickback on this path there are mountain lions and snakes and porcupines ready to jump at our feet. Our disease has no known cure, only treatments. Our disease is misunderstood in the medical world, with medical doctors and the Infectious Disease Society of America denying the existence of chronic Lyme and rebuking its treatments.
You can't compare us to cancer patients or "canceries". Although they suffer greatly, and I don't mean to minimize their plight by saying this, at least they have the wholehearted sympathy, support and understanding of the world behind them. The very large majority of people don't have a clue what Lyme patients endure, and when given the opportunity to learn about it, they generally don't care to, until it's affecting them or a loved one. People still ask what the big deal is about Lyme and assume it's easily treated with antibiotics. Nobody questions the severity of cancer or AIDS.
Which brings me to my next point: We call each other Lymies because we want our voices to be heard. We want to identify with Lyme disease, because we're desperately trying to publicize our plights, and get our friends and colleagues who unknowingly suffer from Lyme in silence to see doctors. The world needs to listen to us. We're gonna keep calling ourselves Lymies and shouting about this disease because we care. If we didn't care, do you think we'd be so obsessed with Lyme? Don't mistaken our chatter surrounding this topic with narcissism--narcissists, by definition, do not care about anyone but themselves.
Ultimately, our name forges bonds between us. We understand each other's asinine quirks and symptoms and side effects because we too endure them. Most of us have spent many years being labeled hypochondriacs or freaks by doctors, and not fitting in with the world at large. So it's a heart-warming relief to have people to turn to when nobody else understands, not even the very doctors whose goal in studying medicine was to help sick people.
I know many of my friends silently question why I talk so much about Lyme disease. For each of the three or four people who've shared this opinion with me, there's ten or more that won't say it to my face. In fact, yet another friend just asked me why I and my other Lyme friend spend so darn much time talking about Lyme. I hope this blog helps them to understand.
And if they still don't want to hear about Lyme, they have the option of tuning out when I write about it on Facebook. It's not gonna stop anytime soon, folks. I plan to keep talking about Lyme disease. Sorry if that's a buzzkill in your martini- and manicure-filled day. At least you can have that martini and manicure; I can't have either. But I'm not complaining. I'm a warrior!!
(For the record, it's not all I talk about. I still talk about kitties, music, current news, and a plethora of other interests. Lyme hasn't swallowed me whole.)
But still, we're not gonna shut up. You'll start hearing more about Lyme disease as it becomes more mainstream in the near future. So tune out or turn up the volume, it's your choice.
Friday, April 15, 2011
New Developments!
Boy does a lot happen in one week. We added my brother to the ever-growing list of Lyme patients, I got a rash all over my body, my doctor tested the efficacy of my supplements, and I got my second gamma globulin shot. Yes, all in one week!
Family News
The circle is now complete. My brother's Lyme band #23 came back positive, making all of my siblings and myself borrelia-filled like three pinatas in a store window. However, unlike my sister and me, he hasn't been chronically ill for life. The only symptoms he really has are sleep disturbances (for which he did a sleep study a few years back), unique headaches, knee injuries from exercise (which aren't necessarily Lyme-induced if they're sports injuries), and frequent bladder urgency. (We've joked that he, my sister and I all have frequent urges to pee, in the presence or absence of bacterial urinary infections. When we drink coffee or alcohol, we all have to pee immediately.)
I find it interesting that (a) he has chronic Lyme but is overall rather healthy, unlike me or my sister and our plethora of symptoms, and (b) he tested positive for the same Lyme band as my sister and I, indicating a definite connectedness to our Lyme.
I now have a theory that my siblings and I were born with Lyme. I will talk about this in a separate entry at a later date.
Detox Rash
Last weekend, I noticed a rash on my chest, which I discovered was also on my stomach, thigh, arms and back. In all, there were about ten individual, dark pink oval rashes somewhere between the size of a dime and a quarter. The rashes did not itch and were not the result of contact with any plants in my gardening endeavors. So naturally I wondered if they were related to Lyme treatment, and voila!--in my ever-present, obsessive quest for answers I learned that many of us Lymies get this rash when we treat. Who knew? Not me! I learn new things every day. This rash is yet another sign of die-off, likely caused by borrelia making their exit from the body via the dermis and making a last-ditch effort to stir up trouble before their fateful demise.
Muscle Testing
My old chiropractor, whom I've been seeing again for adjustments to balance my spine and nervous system, also does muscle testing, "a noninvasive way of evaluating the body’s imbalances and assessing its needs... testing the body’s responses when applying slight pressure to a large muscle, to provide information on energy blockages, the functioning of the organs, nutritional deficiencies, food sensitivities,... herbs and other remedies." (http://www.goodhealthinfo.net/herbalists/muscle_testing.htm)
We tested my supplements to see which ones my body tolerates and rejects. Overall, he was impressed with how strong my results were in my favor, stating several times that my body reacted better to my supplements than the majority of his patients. Still, I was surprised by how many I do not tolerate.
The ones that made the list (to keep taking) include my Neuro-Antitox drops, Cumanda drops, salmon oil, omega-3 blend, iodine, vitamin E, Cats Claw capsules, chlorella, ashwaganda root, chelated magnesium, Armour thyroid, progesterone cream, vitamin B-6 and GABA.
The ones that were neutral and/or not OK (thus doing little benefit or harming me) include my vitamin B-12, samento drops, rhodiola drops, iron ferretin, Symbion probiotics, echinacea/goldenseal blend, vitamin D3, zinc, food-based multivitamin, progesterone oral capsule, and grapefruit seed extract.
Thus, I will only be taking the former list and avoiding the latter list for a month until I can get re-tested.
Gamma Globulin Shot No. 2
This week I had the pleasure of adding "give myself a shot in my buttocks" to my list of new life experiences. (Also included in new experiences at my current age of 29 was running out of gas on the side of a road and walking to a gas station to buy a disposable gallon of gas to carry back to my car, but that's not what I'm here to discuss, is it?) I guess the over-arching theme here could be that, at 29, in the midst of Lyme treatment and home ownership, I'm finding life to be one big adventure. And adventure, even when it's not fun, is still fun, which just contradicted itself. But seriously, adventure is always fun, even when it sucks, right?
Anyway, yesterday I watched myself voluntarily stick a 2-inch needle into my right butt cheek, slowly injecting gamma globulin and questioning my competence the entire time. How far in do I stick the needle? Is this the right spot on my butt? Did I get the air bubbles out? Am I going to die now?
Unlike the first time I had the shot, when I felt a euphoric boost to my mood and energy, to be proceeded by a herx days later, this time I felt a herx right away without the euphoric boost. Had I done something wrong? I was expecting the same results as the first time. But my Lyme co-captain Clark says that he'd anticipated this kind of result. As he later explained in his ever-knowledgeable way, the first time I got the shot I had hardly any natural killer (white) blood cells, so the shot dramatically boosted my uber-frail immune system over a couple of days, leading to a huge herx simply by arming me with infection-killing power. Yet when I got the second shot, I already had a higher number of killer blood cells from the first shot, taking far less time for me to herx and altogether skipping the euphoric "high" feeling.
All in a week's work.
Family News
The circle is now complete. My brother's Lyme band #23 came back positive, making all of my siblings and myself borrelia-filled like three pinatas in a store window. However, unlike my sister and me, he hasn't been chronically ill for life. The only symptoms he really has are sleep disturbances (for which he did a sleep study a few years back), unique headaches, knee injuries from exercise (which aren't necessarily Lyme-induced if they're sports injuries), and frequent bladder urgency. (We've joked that he, my sister and I all have frequent urges to pee, in the presence or absence of bacterial urinary infections. When we drink coffee or alcohol, we all have to pee immediately.)
I find it interesting that (a) he has chronic Lyme but is overall rather healthy, unlike me or my sister and our plethora of symptoms, and (b) he tested positive for the same Lyme band as my sister and I, indicating a definite connectedness to our Lyme.
I now have a theory that my siblings and I were born with Lyme. I will talk about this in a separate entry at a later date.
Detox Rash
Last weekend, I noticed a rash on my chest, which I discovered was also on my stomach, thigh, arms and back. In all, there were about ten individual, dark pink oval rashes somewhere between the size of a dime and a quarter. The rashes did not itch and were not the result of contact with any plants in my gardening endeavors. So naturally I wondered if they were related to Lyme treatment, and voila!--in my ever-present, obsessive quest for answers I learned that many of us Lymies get this rash when we treat. Who knew? Not me! I learn new things every day. This rash is yet another sign of die-off, likely caused by borrelia making their exit from the body via the dermis and making a last-ditch effort to stir up trouble before their fateful demise.
Muscle Testing
My old chiropractor, whom I've been seeing again for adjustments to balance my spine and nervous system, also does muscle testing, "a noninvasive way of evaluating the body’s imbalances and assessing its needs... testing the body’s responses when applying slight pressure to a large muscle, to provide information on energy blockages, the functioning of the organs, nutritional deficiencies, food sensitivities,... herbs and other remedies." (http://www.goodhealthinfo.net/herbalists/muscle_testing.htm)
We tested my supplements to see which ones my body tolerates and rejects. Overall, he was impressed with how strong my results were in my favor, stating several times that my body reacted better to my supplements than the majority of his patients. Still, I was surprised by how many I do not tolerate.
The ones that made the list (to keep taking) include my Neuro-Antitox drops, Cumanda drops, salmon oil, omega-3 blend, iodine, vitamin E, Cats Claw capsules, chlorella, ashwaganda root, chelated magnesium, Armour thyroid, progesterone cream, vitamin B-6 and GABA.
The ones that were neutral and/or not OK (thus doing little benefit or harming me) include my vitamin B-12, samento drops, rhodiola drops, iron ferretin, Symbion probiotics, echinacea/goldenseal blend, vitamin D3, zinc, food-based multivitamin, progesterone oral capsule, and grapefruit seed extract.
Thus, I will only be taking the former list and avoiding the latter list for a month until I can get re-tested.
Gamma Globulin Shot No. 2
This week I had the pleasure of adding "give myself a shot in my buttocks" to my list of new life experiences. (Also included in new experiences at my current age of 29 was running out of gas on the side of a road and walking to a gas station to buy a disposable gallon of gas to carry back to my car, but that's not what I'm here to discuss, is it?) I guess the over-arching theme here could be that, at 29, in the midst of Lyme treatment and home ownership, I'm finding life to be one big adventure. And adventure, even when it's not fun, is still fun, which just contradicted itself. But seriously, adventure is always fun, even when it sucks, right?
Anyway, yesterday I watched myself voluntarily stick a 2-inch needle into my right butt cheek, slowly injecting gamma globulin and questioning my competence the entire time. How far in do I stick the needle? Is this the right spot on my butt? Did I get the air bubbles out? Am I going to die now?
Unlike the first time I had the shot, when I felt a euphoric boost to my mood and energy, to be proceeded by a herx days later, this time I felt a herx right away without the euphoric boost. Had I done something wrong? I was expecting the same results as the first time. But my Lyme co-captain Clark says that he'd anticipated this kind of result. As he later explained in his ever-knowledgeable way, the first time I got the shot I had hardly any natural killer (white) blood cells, so the shot dramatically boosted my uber-frail immune system over a couple of days, leading to a huge herx simply by arming me with infection-killing power. Yet when I got the second shot, I already had a higher number of killer blood cells from the first shot, taking far less time for me to herx and altogether skipping the euphoric "high" feeling.
All in a week's work.
Monday, April 11, 2011
Gardening
Gardens truly heal. The spiritual meditate in them, the elderly walk through them, the young play in them. And I'm recovering through the art of a creative makeover of some land that really needs it.
My little house came with a big back yard that lacked character. Although it includes a few large trees, their placement is somewhat random and there was no landscaping or hedges anywhere else. The ground was covered, in its entirety, by tan colored wood chips, which masked the content of the "soil" underneath. In fact, hidden beneath the wood chips was a landfill of sorts--a daily archaeological adventure of 20th century treasures that I encounter as I dig. And by "treasures", I mean crap like beer bottle caps (lots of them), plastic bags, pieces of childrens' toys, and a variety of useless, random trinkets like bottles of cheap drug-store perfume.
I've gotten rid of the wood chips, laid down a path of winding flagstone, and planted flowers and small trees along the fence. Next I'll be covering the ground with the darkest mulch available and planting a vegetable garden from seeds.
I've discovered, at 29, fully immersed in Lyme disease yuckiness, that this is my nirvana. While I've always been keenly aware that my being is filled with a drive to nurture, mostly through animal rescue, I never knew I had the urge to nurture land until now. Sure, I've spent many a night bottle-feeding orphaned kittens, babysitting toddlers, or running to be by the side of a heart-broken friend, but I've never had the opportunity to nurture land. Perhaps, because, I've never owned any land myself.
This is my land. And with the summer just a whisper and a breeze away, I plan to spend a lot of my time outside at my wrought-iron metal table overlooking the lush foliage that surrounds me. I'm working hard every day to get it ready in time.
I guess I'm not surprised that I've evolved into a green-thumbed visionary. In fact, it's in my blood. My mother's father worked for the Dept. of Fish and Game in Missouri the mid-20th century. His knowledge of plant life and fish had no limits. (He's the one who took me and my siblings camping in the late '80s to a Lyme-ridden area from where my sister and I emerged covered in attached ticks. I have my own theory that Lyme took his brain--he died after suffering from terrible dementia for years.)
His daughters include my mother and my aunt. While mother didn't inherit the green thumb gene, her sister did. My aunt's favorite past time is cultivating her garden.
On the other side of my family are the Arabs, and they were farmers. My dad definitely inherited his ancestors' green thumbs. Solely thanks to my dad, I grew up on a piece of property that included a fig tree, a pear tree, an apple tree, a blackberry bush, a persimmon tree, tomato vines, okra, and herbs like mint, thyme, rosemary, basil and many others.
And I never appreciated any of it. I even looked at the fruit funny, like, as if I would eat that. It didn't come from a safe place, like a grocery store!
But here I am, evolved and fully obsessed with my garden. It's a place of beauty, serenity, dreams and potential. It's a space that my three cats, my babies, can run around, roll in the dirt, chase bugs and bask in the sunshine. It's a place I get my minimal-needed exercise through digging, pulling weeds, lifting bags of soil, and watering plants--even on my sick days. Its joy and beauty is all-encompassing.
I shouldn't actually be surprised that this is how I choose to spend my time recovering from Lyme, or how I choose to spend what money I have (unlike other 29-year-old women, I'd rather spend my moola on plants than shoes or purses!) Because, now I realize I always wanted to live on a farm. Granted, I was more drawn to concept of farm animals than the vegetables, but I still found myself saying multiple times as a child: "I wish I grew up on a farm."
Growing up, my suburban neighborhood was all big houses and small yards. We had fleeting moments that felt farm-worthy, like when we brought home baby ducks that spent the summer swimming (and shitting) in our swimming pool. Or when I would watch through the windows as raccoon mamas or possums sniffed out our trash, their babies not far behind. Or because of the feral cats that bred in our yard because we left out cat food, giving me the opportunity to raise their kittens. Or, of course, the fruits and veggies my dad planted.
So I liked to imagine that I was growing up on a farm. And I was highly jealous of those who did. That's why I embraced my trips to Missouri to visit one set of grandparents, and our trips to Syria to visit the other set. Both destinations were far more rural than where we lived, and thus highly more desirable.
Thanks to the opportunity chronic Lyme has offered me to spend approximately two hours a day working on my yard (which is the maximum I can do before I crash), by the end of this project I will have the following growing in my back yard: six rose bushes, three bougainvellas, several palm trees, a dozen cactuses, more than a dozen cyclamen flowers, a couple ferns, two types of lilies, several tulips, sunflowers, delphiniums, bluebonnets, a camellia bush, a potato bush, a bird of paradise plant, catnip, bunny tails, blue stem grass, baby tears, kale, squash, chard, tomatoes, strawberries, spinach, avocados, oranges, mint and several more unidentifiable plants that came with the yard--including a tree that produces nuts (perhaps walnuts?).
I think I've gone overboard. At least, so far, no ticks!
My little house came with a big back yard that lacked character. Although it includes a few large trees, their placement is somewhat random and there was no landscaping or hedges anywhere else. The ground was covered, in its entirety, by tan colored wood chips, which masked the content of the "soil" underneath. In fact, hidden beneath the wood chips was a landfill of sorts--a daily archaeological adventure of 20th century treasures that I encounter as I dig. And by "treasures", I mean crap like beer bottle caps (lots of them), plastic bags, pieces of childrens' toys, and a variety of useless, random trinkets like bottles of cheap drug-store perfume.
I've gotten rid of the wood chips, laid down a path of winding flagstone, and planted flowers and small trees along the fence. Next I'll be covering the ground with the darkest mulch available and planting a vegetable garden from seeds.
I've discovered, at 29, fully immersed in Lyme disease yuckiness, that this is my nirvana. While I've always been keenly aware that my being is filled with a drive to nurture, mostly through animal rescue, I never knew I had the urge to nurture land until now. Sure, I've spent many a night bottle-feeding orphaned kittens, babysitting toddlers, or running to be by the side of a heart-broken friend, but I've never had the opportunity to nurture land. Perhaps, because, I've never owned any land myself.
This is my land. And with the summer just a whisper and a breeze away, I plan to spend a lot of my time outside at my wrought-iron metal table overlooking the lush foliage that surrounds me. I'm working hard every day to get it ready in time.
I guess I'm not surprised that I've evolved into a green-thumbed visionary. In fact, it's in my blood. My mother's father worked for the Dept. of Fish and Game in Missouri the mid-20th century. His knowledge of plant life and fish had no limits. (He's the one who took me and my siblings camping in the late '80s to a Lyme-ridden area from where my sister and I emerged covered in attached ticks. I have my own theory that Lyme took his brain--he died after suffering from terrible dementia for years.)
His daughters include my mother and my aunt. While mother didn't inherit the green thumb gene, her sister did. My aunt's favorite past time is cultivating her garden.
On the other side of my family are the Arabs, and they were farmers. My dad definitely inherited his ancestors' green thumbs. Solely thanks to my dad, I grew up on a piece of property that included a fig tree, a pear tree, an apple tree, a blackberry bush, a persimmon tree, tomato vines, okra, and herbs like mint, thyme, rosemary, basil and many others.
And I never appreciated any of it. I even looked at the fruit funny, like, as if I would eat that. It didn't come from a safe place, like a grocery store!
But here I am, evolved and fully obsessed with my garden. It's a place of beauty, serenity, dreams and potential. It's a space that my three cats, my babies, can run around, roll in the dirt, chase bugs and bask in the sunshine. It's a place I get my minimal-needed exercise through digging, pulling weeds, lifting bags of soil, and watering plants--even on my sick days. Its joy and beauty is all-encompassing.
I shouldn't actually be surprised that this is how I choose to spend my time recovering from Lyme, or how I choose to spend what money I have (unlike other 29-year-old women, I'd rather spend my moola on plants than shoes or purses!) Because, now I realize I always wanted to live on a farm. Granted, I was more drawn to concept of farm animals than the vegetables, but I still found myself saying multiple times as a child: "I wish I grew up on a farm."
Growing up, my suburban neighborhood was all big houses and small yards. We had fleeting moments that felt farm-worthy, like when we brought home baby ducks that spent the summer swimming (and shitting) in our swimming pool. Or when I would watch through the windows as raccoon mamas or possums sniffed out our trash, their babies not far behind. Or because of the feral cats that bred in our yard because we left out cat food, giving me the opportunity to raise their kittens. Or, of course, the fruits and veggies my dad planted.
So I liked to imagine that I was growing up on a farm. And I was highly jealous of those who did. That's why I embraced my trips to Missouri to visit one set of grandparents, and our trips to Syria to visit the other set. Both destinations were far more rural than where we lived, and thus highly more desirable.
Thanks to the opportunity chronic Lyme has offered me to spend approximately two hours a day working on my yard (which is the maximum I can do before I crash), by the end of this project I will have the following growing in my back yard: six rose bushes, three bougainvellas, several palm trees, a dozen cactuses, more than a dozen cyclamen flowers, a couple ferns, two types of lilies, several tulips, sunflowers, delphiniums, bluebonnets, a camellia bush, a potato bush, a bird of paradise plant, catnip, bunny tails, blue stem grass, baby tears, kale, squash, chard, tomatoes, strawberries, spinach, avocados, oranges, mint and several more unidentifiable plants that came with the yard--including a tree that produces nuts (perhaps walnuts?).
I think I've gone overboard. At least, so far, no ticks!
Sunday, April 3, 2011
Mild Lyme-Induced Autism
The last week has been eye-opening, to say the least.
After three fantastic days of gamma globulin-shot-induced bliss ("I felt like I was on top of the world!"), I crashed. Hard. And the last few days have provided the worst of Neuro-Lyme symptoms--when the brain swells, inflames and pinches neurotransmitters.
I wasn't sure the gamma globulin and ensuing crash were related. But I became curious to learn if, and how, a surge of fertilizer to the depleted soil that is my natural killer blood cells could soon thereafter render my brain more Lyme-toxic. Then a pal explained it to me: By dramatically boosting my killer cells, my immune system suddenly started fighting all my infections at once, causing massive die-off which resulted in a herx.
Twenty-three+ years of chronic, untreated Lyme has depleted my body to dangerously unsafe pseudo-levels of magnesium, iodine, Vitamin D, ferretin (iron), thyroid and adrenal hormones--for all of which I'm taking supplements that make me feel craptastic--and also contributed to chronic viral and bacterial infections such as chronic pneumonia and Epstein Barr, virtually destroying my intra-cellular levels of white blood cells. Leaving my immune system in the dust. A mere mirage of itself.
But now I'm also experiencing this mental low that hits unexpectedly from time to time, a result of the Neuro-Lyme that I've customarily chocked up to my "generalized anxiety disorder" but encompasses so more than just anxiety. Sometimes--maybe two dozen days per year and increasing in frequency now that I'm treating my Lyme--I feel so awkward and closed off from the world that I render myself a combination of anxious, reclusive, and--for lack of a more politically correct term--retarded.
Then my Lyme mentor, another "Lymie" whose life story eerily resembles mine, taught me about mild Lyme-induced autism. He suffers from this condition himself, which he learned about from his doctor, Dr. Klinghardt in Kirkland, WA. This fellow Lymie has become a dear friend to me since my diagnosis in January, in addition to having taught me a wealth of information on Lyme disease, which he knows enough about to write a book or earn a badge or metal or give a speech to the damned IDSA.
If I'm Lewis, he's my Clark. And Clark got the dusty, cracked wheels in my head spinning.
Naturally uber-inquisitive, I wanted to know everything about this condition. I described to Clark my symptoms that periodically flare up, inquiring how they compare to his mild Lyme-induced autism. As it turns out, my experience is almost identical to his. During these moments or days, we become withdrawn from other people out of necessity because we become socially handicapped, which is ironic because Clark and I are both normally extroverted conversationalists on our good days.
But on our bad days, we feel highly awkward around others. We have a hard time articulating, communicating or bonding with others, not to mention we avoid eye contact and feel fidgety. Our emotional ability to sympathize or empathize with others is cut off, and we feel cold to others, which again is ironic because when we're well we're very empathetic and sensitive. But on our bad days, we can't bear to interact with others, because it makes us awkward, exposed, vulnerable, isolated, closed-minded and inarticulate, all of which fit the criteria for Asperger Syndrome, a type of adult Autism.
As I mentioned, these bouts are infrequent but increasing while I treat, or herx. The symptoms are milder than those of people with full-fledged Autism or Asperger's. But many people with chronic Lyme have mild autistic tendencies.
This all makes so much sense. I've had these recurring bouts for more than ten years. In fact, this resonates so well with what I experience that I'm suddenly remembering a number of eccentric situations and stories that point straight to this syndrome.
It's the reason I live alone and have lived without roommates since I was 20. I absolutely have to be away from people on the days when I withdraw. On good days, I enjoy the company of others, and on so-so/in between days I prefer to be alone and productive. So living alone is the most conducive to my condition, overall.
It's the reason I vary so dramatically between smiling and joking with cashiers on good days to being unable to speak a word or even look directly at cashiers on bad days, instead rushing through the check-out in a frenzy to get away.
It's the reason why I would push boyfriends away, suddenly and randomly feeling no love or desire for them whatsoever for a few days, only to return to my love-sick self when the mild autism wore off.
It's the reason why I can get nervous around people and insecurely dwell on where to look or what to do with my hands.
And more. But you get the idea.
Now that I know this, I'm kind of embarrassed to associate myself with the word "autistic", but I'm blogging about it anyway. That's because I feel it's significant. Still, many of my friends might dismiss this as hyperbole, or question how well I fit with the description. To those skeptics, allow me to explain in absolute terms that I have whole-heartedly fought to hide these tendencies from others. When I'm going through one of these bouts of mild autism, I try to be an actress. If I weren't "acting", I would probably scream, slam doors, quietly sit in a corner away from the party crowd, or engage in seemingly bipolar, distressed-teenager-type behavior that's simply unacceptable. (Note: bipolar disorder/manic depression has been ruled out by psychiatrists).
But when it's occurring, I'm always keenly aware of it. And I really, really abhor the feeling. It makes me even abhor myself at times, even though it's not really me I have a problem with. And since I don't want others hating me, I hide it as best as I can. Trust me, it's very real.
Indeed I've hidden it for years, but........ now my secret is out.
So, after I made this discovery (in natural Lewis style, no less), I had a million questions for Clark. The main question pointed at how Lyme physically does this to us.
Clark explained, "When the blood vessels in the brain become inflamed, they become really permeable. They don't hold their contents well, causing the tissues to build up fluids, and swelling in the brain occurs. The swelling builds up pressure, blood can't flow in all the places it normally goes, and the emotional centers of the brain get pinched off. Toxins in addition to the ensuing inflammation cause a lot of irritability and brain dysfunction too because the neurotransmitters simply don't work as well."
That explains why the mild autistic tendencies are sometimes mixed in with irritability, brain fog, word loss, and less frequently for me, rage (although I have my enraged moments). All of the above can work intermittently or overlap. Like a bag of trail mix with M&Ms mixed in.
I've said it before and I'll say it again: for me, the Lyme/borrelia have mainly infected my brain, causing mostly what's known as Neuro-Lyme.
A couple of people have pointed out to me that I need to be taking something that more directly targets the repair of my nervous system. The jury is still out on what supplements I'm going to add to my various antibiotics, anti-virals, immune system boosters and other mysterious tonics I force down my throat at record numbers. I'm going to research this myself, and then I'm going to call my Lyme doctor.
The last few days have been absolutely intolerable up in my brain, coming straight off a high from the gamma globulin shot. Not only have I had a bout of mild Lyme-induced autism, I've also been herxing, sweating, overly sleepy, mildly nauseated and overall toxic. I'm just ready, now starting month #3 of treatment, to feel some improvement rather than feel like a complete and utter trainwreck.
To make matters worse (or just more annoying), everyone and their mother has been asking me how long treatment lasts and when I'm expected to feel better. I. Don't. Know. So. Stop. Asking. Please. Thank. You. If anyone finds the answer, I'd be delighted to hear it. In the meantime, I'm going to be looking into supplements specifically tailored to repairing the nervous system, in hopes that they can alleviate some of this absurdity that has become my state of living.
I know I need to just be patient, which I don't feel today.
On the bright side, right now I'm extremely grateful for my little house of my own, and for Clark for his infinite wisdom, information and friendship.
After three fantastic days of gamma globulin-shot-induced bliss ("I felt like I was on top of the world!"), I crashed. Hard. And the last few days have provided the worst of Neuro-Lyme symptoms--when the brain swells, inflames and pinches neurotransmitters.
I wasn't sure the gamma globulin and ensuing crash were related. But I became curious to learn if, and how, a surge of fertilizer to the depleted soil that is my natural killer blood cells could soon thereafter render my brain more Lyme-toxic. Then a pal explained it to me: By dramatically boosting my killer cells, my immune system suddenly started fighting all my infections at once, causing massive die-off which resulted in a herx.
Twenty-three+ years of chronic, untreated Lyme has depleted my body to dangerously unsafe pseudo-levels of magnesium, iodine, Vitamin D, ferretin (iron), thyroid and adrenal hormones--for all of which I'm taking supplements that make me feel craptastic--and also contributed to chronic viral and bacterial infections such as chronic pneumonia and Epstein Barr, virtually destroying my intra-cellular levels of white blood cells. Leaving my immune system in the dust. A mere mirage of itself.
But now I'm also experiencing this mental low that hits unexpectedly from time to time, a result of the Neuro-Lyme that I've customarily chocked up to my "generalized anxiety disorder" but encompasses so more than just anxiety. Sometimes--maybe two dozen days per year and increasing in frequency now that I'm treating my Lyme--I feel so awkward and closed off from the world that I render myself a combination of anxious, reclusive, and--for lack of a more politically correct term--retarded.
Then my Lyme mentor, another "Lymie" whose life story eerily resembles mine, taught me about mild Lyme-induced autism. He suffers from this condition himself, which he learned about from his doctor, Dr. Klinghardt in Kirkland, WA. This fellow Lymie has become a dear friend to me since my diagnosis in January, in addition to having taught me a wealth of information on Lyme disease, which he knows enough about to write a book or earn a badge or metal or give a speech to the damned IDSA.
If I'm Lewis, he's my Clark. And Clark got the dusty, cracked wheels in my head spinning.
Naturally uber-inquisitive, I wanted to know everything about this condition. I described to Clark my symptoms that periodically flare up, inquiring how they compare to his mild Lyme-induced autism. As it turns out, my experience is almost identical to his. During these moments or days, we become withdrawn from other people out of necessity because we become socially handicapped, which is ironic because Clark and I are both normally extroverted conversationalists on our good days.
But on our bad days, we feel highly awkward around others. We have a hard time articulating, communicating or bonding with others, not to mention we avoid eye contact and feel fidgety. Our emotional ability to sympathize or empathize with others is cut off, and we feel cold to others, which again is ironic because when we're well we're very empathetic and sensitive. But on our bad days, we can't bear to interact with others, because it makes us awkward, exposed, vulnerable, isolated, closed-minded and inarticulate, all of which fit the criteria for Asperger Syndrome, a type of adult Autism.
As I mentioned, these bouts are infrequent but increasing while I treat, or herx. The symptoms are milder than those of people with full-fledged Autism or Asperger's. But many people with chronic Lyme have mild autistic tendencies.
This all makes so much sense. I've had these recurring bouts for more than ten years. In fact, this resonates so well with what I experience that I'm suddenly remembering a number of eccentric situations and stories that point straight to this syndrome.
It's the reason I live alone and have lived without roommates since I was 20. I absolutely have to be away from people on the days when I withdraw. On good days, I enjoy the company of others, and on so-so/in between days I prefer to be alone and productive. So living alone is the most conducive to my condition, overall.
It's the reason I vary so dramatically between smiling and joking with cashiers on good days to being unable to speak a word or even look directly at cashiers on bad days, instead rushing through the check-out in a frenzy to get away.
It's the reason why I would push boyfriends away, suddenly and randomly feeling no love or desire for them whatsoever for a few days, only to return to my love-sick self when the mild autism wore off.
It's the reason why I can get nervous around people and insecurely dwell on where to look or what to do with my hands.
And more. But you get the idea.
Now that I know this, I'm kind of embarrassed to associate myself with the word "autistic", but I'm blogging about it anyway. That's because I feel it's significant. Still, many of my friends might dismiss this as hyperbole, or question how well I fit with the description. To those skeptics, allow me to explain in absolute terms that I have whole-heartedly fought to hide these tendencies from others. When I'm going through one of these bouts of mild autism, I try to be an actress. If I weren't "acting", I would probably scream, slam doors, quietly sit in a corner away from the party crowd, or engage in seemingly bipolar, distressed-teenager-type behavior that's simply unacceptable. (Note: bipolar disorder/manic depression has been ruled out by psychiatrists).
But when it's occurring, I'm always keenly aware of it. And I really, really abhor the feeling. It makes me even abhor myself at times, even though it's not really me I have a problem with. And since I don't want others hating me, I hide it as best as I can. Trust me, it's very real.
Indeed I've hidden it for years, but........ now my secret is out.
So, after I made this discovery (in natural Lewis style, no less), I had a million questions for Clark. The main question pointed at how Lyme physically does this to us.
Clark explained, "When the blood vessels in the brain become inflamed, they become really permeable. They don't hold their contents well, causing the tissues to build up fluids, and swelling in the brain occurs. The swelling builds up pressure, blood can't flow in all the places it normally goes, and the emotional centers of the brain get pinched off. Toxins in addition to the ensuing inflammation cause a lot of irritability and brain dysfunction too because the neurotransmitters simply don't work as well."
That explains why the mild autistic tendencies are sometimes mixed in with irritability, brain fog, word loss, and less frequently for me, rage (although I have my enraged moments). All of the above can work intermittently or overlap. Like a bag of trail mix with M&Ms mixed in.
I've said it before and I'll say it again: for me, the Lyme/borrelia have mainly infected my brain, causing mostly what's known as Neuro-Lyme.
A couple of people have pointed out to me that I need to be taking something that more directly targets the repair of my nervous system. The jury is still out on what supplements I'm going to add to my various antibiotics, anti-virals, immune system boosters and other mysterious tonics I force down my throat at record numbers. I'm going to research this myself, and then I'm going to call my Lyme doctor.
The last few days have been absolutely intolerable up in my brain, coming straight off a high from the gamma globulin shot. Not only have I had a bout of mild Lyme-induced autism, I've also been herxing, sweating, overly sleepy, mildly nauseated and overall toxic. I'm just ready, now starting month #3 of treatment, to feel some improvement rather than feel like a complete and utter trainwreck.
To make matters worse (or just more annoying), everyone and their mother has been asking me how long treatment lasts and when I'm expected to feel better. I. Don't. Know. So. Stop. Asking. Please. Thank. You. If anyone finds the answer, I'd be delighted to hear it. In the meantime, I'm going to be looking into supplements specifically tailored to repairing the nervous system, in hopes that they can alleviate some of this absurdity that has become my state of living.
I know I need to just be patient, which I don't feel today.
On the bright side, right now I'm extremely grateful for my little house of my own, and for Clark for his infinite wisdom, information and friendship.
Subscribe to:
Posts (Atom)