Gastroenterology is a branch of medicine dealing with the stomach and digestion. Digestion, in part, is about diet and nutrition. Therefore, it would stand to reason that a gastroenterologist would be concerned with the food his/her patient eats and doesn’t eat. Right?
Wrong.
I’ve had digestive problems all my life, and not once has a gastroenterologist asked about my diet.
A couple of times along the way, things were so bad I had to be hospitalized. I won’t get into the details because, well, it’s just gross. I don’t like talking about it with my husband, much less broadcasting it all in a public forum. You’ll just have to trust me. The problems were severe.
About a decade ago, I had (another) endoscopy and colonoscopy, both with biopsies, to try to determine the problem. My doctor found that I have little to no cilium in my digestive track. If you don’t know what cilia are, the short answer is they’re hairlike fibers in your digestive tract that help move the food through. After telling me this, my doctor still never addressed nutrition. He didn’t tell me there were some foods that would be more problematic than others. His answer? Pills…
I took the prescription home with me, researched the side effects, and decided I’d live with the symptoms rather than risk the side effects. I should mention the medication was in no way a cure. It was given as a way to control the problem, like putting a band aid dipped in poison on a bleeding artery.
A few months ago, I was talking to the doctor now trying to treat the Lyme. During the course of our conversation, I mentioned what the gastroenterologist had said about me not having cilium. She responded with, “So you don’t eat gluten.”
Umm…
No. I mean, yes, I was eating gluten. I’m vegetarian. I avoid processed foods, chemical additives, dyes, and junk food. I try to eat a healthy, high fiber diet, and a big part of that healthy, high fiber diet was gluten. She proceeded to tell me that anyone lacking cilium in their digestive tract should not eat gluten. The details are murky in my mind at the moment. Something about the gluten being sticky and, without the cilium, it clogs up the digestive tract.
I stopped eating gluten that day. While I still have digestive issues, the intense pain has all but subsided. The nausea remains, but it’s tolerable. I’m no longer living with constant, intense stomach pain. All because of gluten. All because my gastroenterologist, the specialist I went to for my digestive problems, didn’t think nutrition and diet were worth mentioning.
If you have digestive problems of any sort, you might want to consider trying a gluten-free diet. Don’t rely on your doctor to offer nutritional information. You might end up like me, spending half your life eating foods that are making you sicker.
For most adults, life is a nonstop juggling act. Someone or something always demands a piece of our time, and it can be difficult to find the right balance. Sometimes life can feel a bit like this:
Those of us with difficult to treat chronic illnesses struggle with another kind of balancing act. Since doctors often know less than we do about our illness, most of us do a lot of our own research. If you’ve spent any time researching something online, you know how easy it is to become immersed in information. There are medical sites and research papers, blogs and support groups. Each leads to another place, with the promise of another piece of information that just might help. Soon five hours have passed and I’ve bookmarked at least a dozen sites to return to for further reading.
This quest for information can easily become an obsession. And rarely does an obsession ever lead anyplace good.
Recently, a member of a Facebook group for Lyme awareness brought up this topic. I was surprised by how many people struggle with this issue. I’ve been sick all my life. You’d think, by now, I’d have a firm grasp of this balancing act. But, no, I’m probably worse at it now than I was in my younger days. The cycle goes like this: I bury myself in research. Live and breathe my illness. Put every bit of time and energy into finding the right treatment. (Not to mention money.) Then, inevitably, I crash. Hard. Sometimes the crash is because I’ve burned up my credit cards and gotten no better. Sometimes it’s because surrounding myself with my own illness and other sick people only turns the focus too far inward. I feel worse when all I think about, all I read about, and all I talk about is how I feel. Most of the time, it’s a combination of both. Frustrated, I push everything Lyme related to the side. I don’t want to read about it. I don’t want to talk about it. I don’t want to treat it. I only want to ignore it.
This is a crazy approach to life. It’s like living on a seesaw, always reaching for something a little too high and winding up flat on your butt in the dirt.
I’d love to offer some magical advice here. Unfortunately, I don’t know the key to finding the right balance. What I do know is:
We can’t ignore our illness. Pretending we’re ‘normal’ doesn’t make life better or easier. In time, it only makes things worse.
We all need time away from ourselves. Focusing too much inward, too much on our illness, can lead to depression.
Somewhere between the two above options lies the balance we all seek. I imagine that balance is a little different for each of us, kind of like a favorite recipe. Play around with the ingredients enough and eventually we’ll find the perfect combination.
Has a doctor ever told you that what you’re experiencing can’t possibly be happening? Doctors seem to enjoying saying these words to me. And it’s maddening! What does it mean, really? Is he/she telling me I’m delusional? That I don’t know what’s going on with my own body?
I’ve had problems with the lymph glands in my throat for many years. They swell randomly and ache. It’s the Epstein Barr Virus and the chronic Lyme and the cytomegalovirus. I know this. It flares, it subsides, and on we go. Because I’ve lived with this most of my life, I know the difference between the ‘normal’ symptoms flaring up and something else entirely. Last year, I started experiencing the ‘something else entirely’. I was (and still am) having severe pain in my glands. The sensation is a little difficult to describe. It feels like someone has their hands wrapped around my throat and is squeezing hard – but it doesn’t cut off my oxygen. Instead, it feels like the blood flow to my brain is slowing down. And the person squeezing has shards of glass in his hands. Did I mention it hurts? Wow, does it hurt!
The story from there is long and convoluted. The short version: Six months of back and forth to my primary, two specialists, two CT scans, and a scope down my throat. Turns out I have masses in my lymph glands. According to my hematologist, they aren’t cancerous. That’s the good news. The bad news is no one knows what they are.
But that’s not my point here. I want to talk about the ear, nose and throat specialist I was sent to for this problem. He did the scope and ordered one of the CT scans. He is also the one who told me I wasn’t experiencing what I’m experiencing. And I paid him for this. There should be a way to walk out of a doctor’s office when you’re not satisfied – without having to pay. When I was a hairstylist, if I turned someone’s hair blue, then told that person that, no, her hair isn’t blue at all, she wouldn’t pay me. In fact, she’d likely sue me. Yet, a ‘specialist’ can tell me that, no, my body isn’t doing what I know it’s doing, and still I have to pay him.
While talking to the specialist, I did my best to explain the kind of pain I was having when these glands flare up. I explained that, when it’s really bad, I lose my voice. The inside of my throat does not hurt. It’s not a ‘sore throat’. It’s like my vocal cords are being strangled. And, yeah, it hurts! Did I mention that? I’m pretty sure I emphasized that aspect in his office – several times. His reply? “That’s not possible.” Yup, his educated, doctor mind processed all I’d said, and his diagnosis was that it wasn’t possible for me to experience what I’m experiencing.
So… I’m delusional? Pretending? Crazy? An inventive hypochondriac?
He couldn’t deny the masses or the swelling in my lymph glands. At least he didn’t tell me those things were imaginary. He also didn’t tell me what was causing the problem. Remember, this man is a specialist in throats. I was paying him a whole lot of money to shrug his shoulders. When I asked what I was supposed to do about the pain, he advised me to take Advil. Such expert advice is hard to ignore. Yeah, that was sarcasm. When I told him Advil doesn’t do a thing for any of my pain, he suggested I leave. Okay, he didn’t actually suggest that. He just gathered my file, stood, and walked to the door. He was leaving, which was my signal to do so, as well. On our way out, he cheerfully told me I could come back at any time if the problem continued. Umm… what? Continued? It hadn’t improved at all, and he hadn’t done a thing for me. Why, exactly, would I want to return?
Einstein defined insanity as doing the same thing over and over again and expecting different results. Returning to that doctor would make me certifiable.
Since I am not – yet – certifiable, I will not return to that doctor.
For months, I’ve done my best to ignore the ache in my glands. I’d have brief spells when the intense pain would subside and I was able to ignore it all. But it’s flaring up again and my resistance has worn down. I keep losing my voice and, when I do have a voice, it hurts to talk. So I’ll have to seek out another ‘specialist’. But if the next one tells me what I’m experiencing can’t be happening, I might wind up looking like this:
The title is a line from the song Unwell by Matchbox Twenty. The first time I heard it, I thought, Wow, that’s my life’s theme song! It’s like Rob Thomas reached into my psyche and pulled out my story. As I got to know others with chronic health problems, I realized this song, in many ways, tells all our stories.
The first verse:
All day, staring at the ceiling, making friends with shadows on my wall All night, hearing voices telling me that I should get some sleep Because tomorrow might be good for something Hold on, feeling like I’m headed for a breakdown And I don’t know why…
I never had a song speak to me so specifically about personal experiences. Fatigue is a vicious battle for many victims of chronic Lyme and other chronic health issues. (I also have fibromyalgia, chronic fatigue syndrome, chronic Epstein Barr virus, cytomegalovirus, and an assortment of bacterial c0-infections.) The truly frustrating aspect is, despite the intense fatigue, quality sleep is difficult, if not impossible. I cannot remember the last time I slept longer than two hours in one stretch. It’s been decades. I could live my life in a series of naps – sleep for two hours, up for two hours, consecutively, all day, every day. Sometimes, when the pain is particularly bad, the exhaustion isn’t enough to allow me sleep. I’ve heard those voices in my head at 3 a.m., as I lie there too tired to get up and too awake to sleep, telling me I need to get some sleep because tomorrow might be good for something.
The last two lines in that verse are words most everyone who has battled a chronic illness can relate to. We’ve gone years with debilitating symptoms that no one understands. Often, no one believes they’re real. We’re imagining them. Making ourselves sick for reasons unknown. I’ve felt those moments, as my health spirals downward and my brain refuses to function. I’ve lost my memory, lost my way while driving in a small town where I spent most of my life. Disoriented, confused, sick and nowhere to turn. I’ve felt those moments, like riding the downslope on a rollercoaster, when I’m sure I’m falling apart but I have no idea why.
The chorus:
But I’m not crazy, I’m just a little unwell I know, right now you can’t tell But stay a while and maybe then you’ll see A different side of me
I’m not crazy, I’m just a little impaired I know, right now you don’t care But soon enough you’re gonna think of me And how I used to be
If you’ve lived with a chronic illness, or with someone who suffers with one, the above words need no clarification. Chronic Lyme is one of the illnesses I call invisible. We look fine on the outside. Doctors often say we’re fine; physically, at least. Because Lyme attacks the brain, our behavior sometimes seems… odd. The neurological symptoms can make us appear high, drunk, or crazy. We gradually watch our old selves slip away. How I used to be… Yes, in many ways I’m still the same. But in many ways, I’m not.
The second verse:
I’m talking to myself in public, dodging glances on the train And I know, I know they’ve all been talking about me I can hear them whisper, and it makes me think There must be something wrong with me Out of all the hours thinking, somehow I’ve lost my mind
I’ve never done much traveling by train, but I still easily relate to this verse. Talking to myself and dodging glances anywhere in public has become a lifestyle. I’m not overly vocal. I don’t talk a lot, to anyone. So the ‘talking to myself’ is largely internal. But it’s constant. Back before debit cards took over the universe, and we still wrote checks at stores, I’d go inside a store and, from the moment I pulled into the parking lot, I’d remind myself where I was. I’d also have to park in the same vicinity each time, so it became a habit, and I’d have to remind myself of where my car was. So I’d recite these things to myself all through the store. I’m in Jordan Marsh and I’m parked by the pole with the number 3 painted on it. If I didn’t do this, I’d get to the checkout and my mind would be blank. Where am I? How do I fill out this check if I don’t know which store I’m in? Or I’d walk outside and have no clue where my car was. None. When it came to malls, with more than one entrance, I’d be totally screwed. After wandering the lot for thirty minutes or more a couple of time, I learned to always park in the same place, especially at a mall, regardless of which store I needed inside.
Dodging people is something I did a lot of. I still do. It’s not that I don’t like people or don’t want to talk to them. It’s just sometimes far more effort than I can deal with. Talking to people requires focus and concentration, especially if you’re truly going to participate in a conversation. Sure, I could be self-centered and rant about my condition. (A sure guarantee that people would then start avoiding me!) Or I could nod a lot and give one word answers to whatever the person was saying. To participate, though, requires focus. Thought. Energy. If I get a rare day when I can walk the dogs around the block, that’s probably all I want to do and all I can handle. A simple Hello, how are you? to my neighbors is fine. More than that? I know it sounds crazy, but it can drain me to the point of mind-numbing exhaustion.
The line about people talking about me and the whispers, that’s not paranoia. People did talk about me. If you had a family member or friend who claimed to be sick but doctors couldn’t help, you’d be talking about that person, too.
Thinking I lost my mind… For years, I thought I had. Now I know I have, though I understand why. These days, when I tell my husband I’m going to put the garbage in the controller, he doesn’t even flinch. Nor do I attempt to explain. I just go on with putting the laundry in the dryer.
I’ve always been one to hear the story in lyrics. I relate to them in various ways. This song, though, touches a part of me that few people understand. Thank you, Rob Thomas, for giving me a song that makes me feel understood. I don’t know what the inspiration was. I probably don’t want to know, as that could easily ruin the magic. This way, I get to keep it as my theme song.
October is National Anti-Bullying Month. Bullying is now, rightfully, in the news and being discussed in schools. Finally. Childhood bullying is an issue society has ignored far too long.
But there are all kinds of bullies, and all kinds of bullying. Today I want to talk about the bullying endured by many people with chronic illnesses. It’s real. And it’s painful.
I’ve battled invisible illness since early childhood. We call these chronic health problems invisible because, for the most part, we appear healthy. And, while no one wants to look sick, looking healthy when you’re not creates a whole new set of problems.
When I was young, long before any diagnosis labeled me as chronically – and legitimately – ill, I was considered “delicate”. To a child, delicate is just another word for weak. I got sick a lot more often than other kids, and took longer to recover. I couldn’t handle a lot of exertion. The chronic headaches, muscle aches, and general malaise were a weakness. I just wasn’t strong enough to handle life the way ‘normal’ people did.
At age 30, I was finally handed my first in a string of diagnoses. Fibromyalgia. This was 20 years ago, and not much was known about the mysterious diagnosis. It’s not even called a disease or an illness. It’s a syndrome.
While my memory is faulty and much of it lost, that day is one I remember clearly. Trauma has a way of embedding the memories deep. My doctor’s face was grim when he offered up this word. He knew about fibromyalgia because his wife had it. I asked if it was curable. He handed me a prescription, told me to take it for six weeks, then we’d talk.
I know it sounds odd to say I was relieved at this big word my doctor handed me. For so many years, I’d been told nothing was wrong. Now I had a label. A legitimate diagnosis. Or so I thought.
The prescription my doctor gave me was for an antidepressant. This instantly stole the legitimacy of my illness being anything other than ‘in my head’. I wasn’t depressed. I was frustrated. Sad at times. But not depressed. My doctors all agreed with me there. Yet, I was given an antidepressant to treat my syndrome.
I went home that day and told my then-husband what the doctor had said. He gave me a look of mild disgust and walked away. He never asked what fibromyalgia was or how it would effect the rest of my life. I was given an antidepressant and that was all he needed to know.
He was a bully. He made me feel weak. He belittled my health complaints. And I let him, because I didn’t know any better.
He wasn’t the only bully in my life. Some of them were disguised as friends dispensing helpful advice. Others were clients in the small town salon I worked at. All were lucky enough to be born healthy, and thought this gave them the right to be judgmental. I’d hear things like:
“If you stopped dwelling on it, you’d feel a lot better.”
“You just need to get out and get some exercise. Your muscles hurt because you never use them.”
“We’re all tired after working all day. Deal with it. You’re not special.”
“You’re just lazy, not sick.”
And, my personal favorite:
With a twist of sarcasm… “You don’t look sick.”
These words, all of them, are a form of bullying. Most people with an invisible, chronic illness, go years without a diagnosis. Some, like me, go decades. As our health deteriorates, so does our self-esteem. We question whether it is all, in fact, in our heads. Often the people we depend on most, the people who are supposed to love us unconditionally, are the worst offenders. Whether intentionally or not, their offhand, callous remarks slowly break apart our spirit. And that is bullying.
To some extent, I understand the reactions of the people around us. You see, we look fine. It’s easy to forget that we are absolutely not fine.
If you have a friend or family member suffering with a chronic illness, please remember appearances mean nothing. Most of us would love nothing more than to get up in the morning and not have to focus on the pain. We don’t want the laundry to build up because we’re too tired to lift the basket. We want nothing more than to run through the park with our kids or our dogs. We want to be normal.
What we need is support. We need to know we’re loved, regardless of our physical limitations. We need, above all, to know you understand and believe us.
One of the hardest things about living with chronic illness is not allowing it to be the focus of my life. Imagine this with me, if you will…
You have a bad case of the flu. You don’t sleep more than two hours at a time. And you have 10 pound weights strapped to both ankles and both wrists. Now imagine this is how you will live the rest of your life.
When you live like this, it’s impossible not to think about your illness during almost every moment in each of your days. The simplest activities become calculated events.
I have a running monologue in my head; a kind of private pep talk that has been such a constant in my life, I’m often not even aware of it. The fifth or sixth or tenth time I wake up from a ‘night’s sleep’, I look at the clock and decide it’s time to get up. That’s an arbitrary decision, since I have no pressing need to do so. I try to keep some sort of schedule, because it’s one way I stay balanced and keep moving forward. So my thought is to get up, which seems simple enough – except for the flu and the lack of sleep and the 10 pound weights. My monologue begins: The dogs need to go out. I have a lot of email to answer. I would love a cup of tea. Stop thinking about the muscle pain and just move.
And so I do.
Throughout the day, my monologue might include:
A shower might ease the muscle ache. Get through that and I can sit for an hour before starting the laundry.
I’ll vacuum half the house and worry about the other half later.
I’ve been sitting here staring at this half-written email for twenty minutes. My brain is stalled. Too tired to think. Finish this one email and I’ll do something mindless for an hour.
Each movement of each day comes with a price. If I spend a lot of time sitting at my desk, I know the muscle pain will be worse. If I have an appointment, I know the time out of the house with take more physical and mental energy, leaving me drained and unable to accomplish much of anything afterward. If I want to go out for lunch and spend an hour in the bookstore on Saturday, I know Sunday will be a day for nothing more than sitting on the couch with a book and mindless TV.
When you’re forced to map out the smallest activities of each day, it’s easy to get wrapped up in your illness. For those of us in this situation, it’s vital to have at least one activity that allows us to step outside ourselves. I’m fortunate to have several that work to varying degrees.
I write fiction. When my brain is behaving, there is no better escape for me. My writing is character-driven, and this forces me to step inside each character’s life. I need to feel their emotions in order to express them. I need to see their world in order to describe it. Those times when I’m lost with my characters are bliss.
I read. A good book can take me places outside of myself. I get so lost in the fiction that, for a brief time, I forget the reality.
I spend time with my dogs. I can do nothing more than sit in the grass with my dogs, and there I’m able to find joy in the smallest things. They chase each other. They sniff each blade of grass as if it’s a brand new experience. They pounce in my lap and look at me as if to say, “The sun is shining and it’s a magical day!”
I get lost in music. Sometimes music is a perfect escape from the pain. I put something funky on, let the beat move me, and chair dance while singing along. (Albeit, badly.) Other times, music is about embracing the pain. Certain songs bleed pain and, for me, can be the perfect catharsis on a difficult day.
If you’re dealing with chronic health problems, I hope you’ve found your own temporary escape hatch.
What I’d meant to ask my husband was whether he wanted a bagel with his eggs. I confuse words all the time, more so when I’m excessively tired or in the midst of a bad flare-up with the Lyme Disease and/or Epstein Barr Virus. I’m currently in a major flare of both, so my speech is… colorful. Sometimes it’s so ridiculous, I crack myself up. Sometimes, and maybe this is worse, I don’t even notice what I’ve said.
Can you put the clothes in the microwave?
I say this so often, my family no longer questions me. The microwave is usually Lyme-speak for dryer. We don’t even own a microwave.
Can you vacuum the lawn?
Vacuum the floor? Mow the lawn? My son just stares at me and waits for clarification.
When I’m out in public, with people I don’t know well and don’t want to make a fool of myself in front of, I have to concentrate hard on each word in order to get it right. I can’t just allow myself freedom of speech. Everything has to be censored and examined before I open my mouth. Sometimes this intense focus causes me to stammer as I search for the right word. This was especially embarrassing when I was working as a hairstylist. Have you heard the Pink Floyd song Learning To Fly? Tongue tied and twisted, just an earth-bound misfit…
I’ve learned to embrace the awkwardness. My brain is a complicated place to be. I can think all sorts of complex thoughts. Just don’t make me say them aloud.
I like nonsense, it wakes up the brain cells. ~ Dr. Seuss
The sound of a blues guitar transports me out of my body, away from the pain. When I hear those first few notes of Cryin’ by Joe Satriani, I’m immediately lost inside the magic. This song bleeds pain. It’s like that guitar is telling my story, releasing the burden and letting it fly.
And Joe Bonamassa playing Sloe Gin is enough to break my heart. The way those notes cry out, the pain of the music and my own pain get tangled and set free.
I was very young the first time I heard a Blues guitar. The connection was instant. And, while I love many genres of music, something about this one style, this one instrument, resonates deep. The Blues is where I go when I feel sad. It’s also where I go when I feel good, or when I simply need a way to set my pain free.
To many of you, it probably sounds strange that I find healing in The Blues. The best explanation I can offer is the Blues guitar gives voice to my illness, to my very being.
Regardless of your genre choice, there is no doubt music has the power to heal. Music therapy has been used to help stroke patients regain speech, and help children with developmental disorders learn to speak and improve their coordination. The success of music therapy on mood disorders such as depression has created a new field called Music Psychotherapy.
Music has not cured my Lyme disease, Epstein Barr virus, or any of the other ‘chronic’ labels I’ve acquired over the years. But healing and curing are two different things. My body is sick, but my spirit doesn’t have to be.
Whatever your choice of music, take the time to find the healing power within the sound.
Lyme disease is poorly understood – or misunderstood – by both the general population and the majority of doctors. Today I’ll attempt to clear up some common misconceptions.
Lyme disease is curable. This is both true and false, depending on the stage of the disease when diagnosed. If diagnosed early, typically within the first two months, Lyme disease is completely curable with oral antibiotics. If diagnosed within the first year or so, but after the initial two month period, Lyme can be cured with long term antibiotics. Often this involves IV antibiotics, because oral does not work. When you get beyond two years before a diagnosis, a complete cure becomes less probable. The longer a person is untreated, the more damage is done. The likelihood of antibiotics working drops considerably with each passing day. Once Lyme disease enters ‘late-stage’, the damage is permanent and, as of now, incurable. This is why early diagnosis is vital. Sadly, the majority of cases currently go undiagnosed and/or misdiagnosed for years.
Blood tests for Lyme disease are accurate. This is absolutely false. Before my diagnosis, I was tested by two separate doctors; once by my then primary care doctor and a couple of years later by an immunologist. Both times I was told I did not have Lyme disease. Many years later, I found an infectious disease specialist who was also an LLMD (Licensed Lyme Medical Doctor). Unlike my prior doctors who only ordered the common Western Blot blood test, the specialist ordered four tests. Two were negative, two were positive. The common blood tests are only accurate in the very early stages of the disease. They are useless in chronic stages. Blood tests for Lyme disease are a poorly understood diagnostic tools.
A bull’s eye rash will appear after the tick bite. This is false more often than it’s true. According to the International Lyme and Associated Diseases Society (ILADS), fewer than 50% of people infected had the bull’s rash. This means that more than half the people infected will not see the tell-tale rash. (The CDC claims 70-80% of infected people will get the rash. Their information on this, as well as their testing process, is outdated poorly researched. In fact, the CDC acknowledges their criteria were never intended for use as diagnostic tools.)
You will only risk getting Lyme disease if you spend time in the woods. This is completely false. We’ve ruined the habitat of deer everywhere, which means they are often living close to us. Some people see them wandering in neighborhoods and backyards. Also, I recently read that birds might be spreading the deer ticks across the country, which further complicates things. While being in the woods is still a bigger risk, you could be in a park or your back yard and get bit by a deer tick.
According to the CDC, in 2010, 94% of Lyme disease cases were reported from 12 states:
Connecticut
Delaware
Maine
Maryland
Massachusetts
Minnesota
New Jersey
New Hampshire
New York
Pennsylvania
Virginia
Wisconsin
However, just the other day I read that Ohio has seen a major spike in recent cases of Lyme disease. Not living in one of the above states does not mean you have no need to worry about deer ticks and Lyme disease.
Also, I want to emphasize that the above information from the CDC is *reported* cases. Not all cases of Lyme disease are reported to the CDC. In fact, I’m guessing a large percentage are not.
You will see the tick on your skin. This is another misconception. Deer ticks are tiny, some no bigger than a pinhead. Chances are, you will never see it.
I hope this information will help at least one person out there avoid what I and millions of others live with each day.
Only people with chronic illnesses truly understand what it’s like to chase a cure. Often it’s not even a cure we expect, only something to manage the symptoms and keep the illness from progressing. For many of us, this is a lifelong process.
Over my 50 years on this planet, I have tried far too many medications, supplements and assorted treatments to count.
My medical debt would pay for my house in cash.
Are you asking, what about insurance? Please. You know that’s funny, right?
For most of my life, I haven’t had prescription coverage. Even when I have had it, insurance only covers a portion of tests. Sometimes it won’t pay at all. And what about the so-called ‘alternative’ stuff? Nope. They’d rather wait until I’m hospitalized, then pay that bill.
My life has been a vicious cycle of medical drama. I aggressively pursue answers, treatments, something to ease the symptoms and progression of the illness. I visit doctors, they run tests, decide on a treatment. I have high hopes, spend money, get no results at best and horrible side effects at worse. I get discouraged. Give up. Swear never to waste money like that again. Wait months. Get sicker. Start over.
My mainstream doctors get irritated when I mention that ‘alternative’ methods have worked best for me. They lecture me about FDA approval and the lack thereof. This makes me laugh. Or it irritates me. Sometimes both. Are they even aware of the side effects of the FDA-approved medications they hand out? The migraine medication one doctor put me on had the side effect of headaches. The antiviral my Lyme specialist had me on causes (and did cause) kidney damage. Don’t even get me started on the side effects of antidepressants or the addictive properties of pain medications.
I’ve never had a side effect more severe than mild nausea from supplements. I’m not saying I haven’t wasted money on alternative treatments that didn’t work. I’m just saying they aren’t nearly as dangerous as most of the mainstream world would like us to believe. The FDA and their ‘approval’ process is a rant I’ll save for another day. The thing is, when you’re chronically ill, you want all your options open. You don’t want doors slammed in your face because the insurance companies, FDA, mainstream medical care, and ‘alternative’ medical care can’t play nicely in the sandbox.
You know the Harry Nilsson song… Put the lime in the coconut, drink them both up…
If I thought drinking lime-flavored coconut milk would make me feel better, I’d do it. Every day. Every hour if necessary. And, really, that’s not so crazy. Coconuts have antibacterial properties. Limes are high in vitamin C, which boosts immune health. Both properties are important in the treatment of Lyme disease. Neither is addictive or has worrisome side effects. Yet, if my doctor decided this would be an effective treatment, can you imagine the reaction from the insurance executives? They’d pass the bill around the office for giggles.
They, of course, would never pay a dime of it. But they would pay the hospital bill when my white count crashes into the danger zone because mainstream medicine isn’t working.
For now, today, I’m in my sick of doctors and broke from failed treatments phase of my vicious cycle. Tomorrow, next week, next month or six months from now, that will change. Maybe then I’ll try the lime in the coconut. Who knows… Harry Nilsson could have been on to something.
I’ll leave you with a fun video to, hopefully, bring a smile to your day. Here’s Harry singing Lime in the Coconut on YouTube:
Sometimes, and maybe this is worse, I don’t even notice what I’ve said.
