I consider myself a good judge of character when it comes to doctors, seeing as how I've been to so many of them. Neurologists, cardiologists, psychiatrists, family practitioners, gastroenterologists, allergists: I've seen 'em all. Each time I go I have to brace myself for one of three responses.
There's the arrogant guffaw, head shake, and good ol' boy slap on the back while hearing, "Three kids would make anyone tired!"
There's the confused murmur, head shake, and pat on the back while hearing, "You do seem to have the symptoms of (insert name of idiotic new development), but your tests all came back normal."
Then there's the distracted dismissal, head shake, and scribble scribble scribble on their prescription pad, and, "Trythisseeifithelpsgoodluck." Then out the door. Love that one.
There have been a few shining gems in the bunch, however, like my family practitioner who always brings in a medical student because I have such a huge collection of symptoms, my cardiologist who actually listens, then vows to do every test she can think of (she actually found the Lyme), and a nurse at her office who stopped her pre-exam while I rattled off my symptoms yet again to place her hand over mine and say, "Don't give up. They may not know what it is now, but they'll figure it out." Moments with these people who actually cared almost make up for the horrors of my past medical life, and it is those moments that kept me vigilant when I had all but accepted that I must be crazy. At my first post-Lyme diagnosis appointment with my family doctor he went over every symptom I'd ever come to him with for the past seven years and it was like a 21 gun salute of validation. I went to the car and cried (I hadn't remembered telling him all that stuff, damned memory loss) and realized I have lost so much to being ill. I'd been in denial that everything I'd experienced could be attributed to the Lyme, but it had been laid out in front of me and I could no longer look away. I vowed not to lose another minute to a doctor who didn't care, didn't know, or didn't have the time to put me on the path I needed to take to get well again.
I recognize that I am lucky in so many ways when it comes to this disease. I tested positive on both the ELISA and Western Blot tests, which many Lyme patients do not do. I found a Lyme doctor near my house that was inexpensive in comparison with others elsewhere, and he was able to see me right away. I can still walk, talk, and get things done (on most days) and have fewer complications than some. And I know what I need to do to overcome this, or at least to keep trying.
On the 26th I walked into my new doctor's office, the beginning of an appointment that was to last about two hours. I told him all of my symptoms (at least the ones I could remember), asked questions, got a list of tests he wanted done, and introduced him to my whole family. He used to be a general practitioner at a busy walk-in clinic, but opened his own practice mostly dedicated to the treatment of Lyme. He is one of only a few doctors in the state of Kansas still treating this illness. He has certifications, accreditations, and a great background. Many of his family members have had Lyme, and with proper treatment became well again. After so many doctors, so many tests, and so much uncertainty, I can only describe it as bittersweet to walk into an appointment and feel those in the room know you already. So there was only relief when he said, "Look at this list of symptoms and you'll see you have all of the typical signs. We can start a treatment that won't cost too much, will make a big improvement in your condition and shouldn't take long to get going, if you agree you want to do this."
Was there any other option than to say yes?
5.31.2009
5.16.2009
Letter To The Editor
I just feel the need to get a few things off my chest: A few things that won't sound pretty.
To every doctor who has ever told a patient their symptoms were all in their head: fuck you. You're a disgrace to your profession, and might do us all a service by flushing your credentials right down the toilet. Healthcare isn't a sitcom whose conflict can be solved in 30 minutes. Get over yourself. Just because you can't find the answer doesn't mean the answer isn't out there. And a little tip: You'd have more time to spend with patients in their appointments if you cut down on the visits from the drug company sales reps. Just a suggestion.
To the insurance companies who won't pay for my medications: you hold real people's lives in your hands. One day someone you love will be told they're not covered for a medical condition or their prescriptions or treatments and you'll realize how truly devastating those words are. To be told you are sentenced to die, probably slowly and painfully, because of money, is the ultimate slap in the face to someone who pays those premiums that keep your company alive. And what of those without the luxury of insurance? Well, those people will know they're going to die just the same, without the patronizing rejection letter.
To city officials and other authorities who say "We don't have Lyme here": You're lying to yourselves, and it's going to cost people their lives. Ticks don't stop at the borders of states and countries. Lyme Disease is everywhere. The sooner you stop denying it the sooner more people will be adequately treated, the more the disease will be prevented, and the more lives will be saved. It's just insanity, not to mention a scientific impossibility, that your town or your state, as well as you or someone you know, would be immune to this disease. Think about it. How can you not see the absurdity?
To those who say Chronic Lyme Disease does not exist: You have never had to suffer the frustration of being denied treatment for something considered curable, only to develop debilitating symptoms because of it. You have never had to watch someone healthy turn into an invalid, have never experienced the pain that engulfs your body, the inability to work, the fear and uncertainty that comes with each new malady that there seems to be no explanation for. You've never spoken to others whose stories are so like your own it's unimaginable that the medical community could turn a deaf ear. You've never had someone look you in the face and say you're making it up. If you had you would never disrespect those whose very lives are stolen by your denial, your ignorance, and your impatience. One day there will be too many voices for you to refuse to listen. One of those voices I intend to be my own.
And to those who still struggle with Lyme Disease, or any condition: Keep fighting. In 1993 I had panic attacks so severe I couldn't attend middle school. Doctors couldn't diagnose me. I learned on my own about Anxiety Disorder.
In 2003 I began having hypoglycemic episodes which I recognized from having a diabetic grandmother. After explaining my symptoms to a doctor who didn't believe what I was saying, I had to purchase a blood sugar monitor to keep track of my blood glucose levels, which were dropping into the 40's and 30's. Falling to those numbers put me at risk for coma and even death.
In 2005 my two year-old daughter began suffering from stomach aches, vomiting, diarrhea, and severe eczema. In 2007 I rushed her to the emergency room with a swollen eye and breathing problems that I knew was an allergic reaction. Three different allergists told me she wasn't allergic to anything. THREE. A blood test revealed severe allergies to several foods, animals, molds, and plants. A normal allergic antibody count is less than 160. My daughter's antibody count was 2,863.
In 1999 I suffered from a cyclical illness of vomiting, fever, and swollen glands for nearly six months and was told it would pass. Nine years later with neurological problems such as memory loss, speech dysfunction, twitching, and vision disturbances, I was diagnosed with Lyme Disease by my cardiologist, who I was seeing for severe autonomic dysfunction. I have been to two endocrinologists, a neurologist who laughed in my face and refused to test me for anything, numerous general practitioners, psychiatrists, and an endless list of other specialists. If only one of those doctors had cared at all back in 1999, my entire life would not now hang in the balance.
And to my children, who I have surely passed this disease onto: I will not stop fighting for any of us. I have no interest in being a martyr, so the only alternative is to live with every ounce of failing energy I have so that we may see a day when this disease is acknowledged for what it truly is: an epidemic that will touch everyone in some way at some time in their lives. I have tried to protect you from everything I could envision from the day you were born. How ironic that the one thing I didn't see coming would be passed through my blood. I am truly sorry, my little babies, and dread telling you the truth when those tests come back. You have been so afraid for me, have seen the pain I have gone through, and I can't imagine how scared you'll feel when you find out you may have to do the same. I can only hope what everyone has told me will prove correct: that children bounce back much more quickly than adults, and because I can only think of good things happening I wish for my oldest daughter's rashes and joint pains to be gone, my middle daughter to be able to hold a dog without needing an epinephrine shot, and my son to never have to feel the effects of this vicious disease as it steals his life away day by day. I would go to the ends of the earth for you, and I won't stop now, no matter how sick I get.
And finally, to my new doctor: Three physicians offices hung up on me when I asked if my children could be tested for Lyme Disease and when I mentioned the word Lyme about myself. You didn't. I haven't even met you yet, and already you've done so much more than 99% of the doctors I've seen. Even such a small unwitting gesture gives me hope. And for now, hope is the only treatment I can afford.
To every doctor who has ever told a patient their symptoms were all in their head: fuck you. You're a disgrace to your profession, and might do us all a service by flushing your credentials right down the toilet. Healthcare isn't a sitcom whose conflict can be solved in 30 minutes. Get over yourself. Just because you can't find the answer doesn't mean the answer isn't out there. And a little tip: You'd have more time to spend with patients in their appointments if you cut down on the visits from the drug company sales reps. Just a suggestion.
To the insurance companies who won't pay for my medications: you hold real people's lives in your hands. One day someone you love will be told they're not covered for a medical condition or their prescriptions or treatments and you'll realize how truly devastating those words are. To be told you are sentenced to die, probably slowly and painfully, because of money, is the ultimate slap in the face to someone who pays those premiums that keep your company alive. And what of those without the luxury of insurance? Well, those people will know they're going to die just the same, without the patronizing rejection letter.
To city officials and other authorities who say "We don't have Lyme here": You're lying to yourselves, and it's going to cost people their lives. Ticks don't stop at the borders of states and countries. Lyme Disease is everywhere. The sooner you stop denying it the sooner more people will be adequately treated, the more the disease will be prevented, and the more lives will be saved. It's just insanity, not to mention a scientific impossibility, that your town or your state, as well as you or someone you know, would be immune to this disease. Think about it. How can you not see the absurdity?
To those who say Chronic Lyme Disease does not exist: You have never had to suffer the frustration of being denied treatment for something considered curable, only to develop debilitating symptoms because of it. You have never had to watch someone healthy turn into an invalid, have never experienced the pain that engulfs your body, the inability to work, the fear and uncertainty that comes with each new malady that there seems to be no explanation for. You've never spoken to others whose stories are so like your own it's unimaginable that the medical community could turn a deaf ear. You've never had someone look you in the face and say you're making it up. If you had you would never disrespect those whose very lives are stolen by your denial, your ignorance, and your impatience. One day there will be too many voices for you to refuse to listen. One of those voices I intend to be my own.
And to those who still struggle with Lyme Disease, or any condition: Keep fighting. In 1993 I had panic attacks so severe I couldn't attend middle school. Doctors couldn't diagnose me. I learned on my own about Anxiety Disorder.
In 2003 I began having hypoglycemic episodes which I recognized from having a diabetic grandmother. After explaining my symptoms to a doctor who didn't believe what I was saying, I had to purchase a blood sugar monitor to keep track of my blood glucose levels, which were dropping into the 40's and 30's. Falling to those numbers put me at risk for coma and even death.
In 2005 my two year-old daughter began suffering from stomach aches, vomiting, diarrhea, and severe eczema. In 2007 I rushed her to the emergency room with a swollen eye and breathing problems that I knew was an allergic reaction. Three different allergists told me she wasn't allergic to anything. THREE. A blood test revealed severe allergies to several foods, animals, molds, and plants. A normal allergic antibody count is less than 160. My daughter's antibody count was 2,863.
In 1999 I suffered from a cyclical illness of vomiting, fever, and swollen glands for nearly six months and was told it would pass. Nine years later with neurological problems such as memory loss, speech dysfunction, twitching, and vision disturbances, I was diagnosed with Lyme Disease by my cardiologist, who I was seeing for severe autonomic dysfunction. I have been to two endocrinologists, a neurologist who laughed in my face and refused to test me for anything, numerous general practitioners, psychiatrists, and an endless list of other specialists. If only one of those doctors had cared at all back in 1999, my entire life would not now hang in the balance.
And to my children, who I have surely passed this disease onto: I will not stop fighting for any of us. I have no interest in being a martyr, so the only alternative is to live with every ounce of failing energy I have so that we may see a day when this disease is acknowledged for what it truly is: an epidemic that will touch everyone in some way at some time in their lives. I have tried to protect you from everything I could envision from the day you were born. How ironic that the one thing I didn't see coming would be passed through my blood. I am truly sorry, my little babies, and dread telling you the truth when those tests come back. You have been so afraid for me, have seen the pain I have gone through, and I can't imagine how scared you'll feel when you find out you may have to do the same. I can only hope what everyone has told me will prove correct: that children bounce back much more quickly than adults, and because I can only think of good things happening I wish for my oldest daughter's rashes and joint pains to be gone, my middle daughter to be able to hold a dog without needing an epinephrine shot, and my son to never have to feel the effects of this vicious disease as it steals his life away day by day. I would go to the ends of the earth for you, and I won't stop now, no matter how sick I get.
And finally, to my new doctor: Three physicians offices hung up on me when I asked if my children could be tested for Lyme Disease and when I mentioned the word Lyme about myself. You didn't. I haven't even met you yet, and already you've done so much more than 99% of the doctors I've seen. Even such a small unwitting gesture gives me hope. And for now, hope is the only treatment I can afford.
5.13.2009
Enough of That
There are storms rolling in from Oklahoma today. There are ants crawling on the table. The lawn needs to be mowed, the laundry done. No matter how sick I am, life goes on around me anyway, because life doesn't care. It is the world continuing to turn, kids refusing to stop growing, hours on a course that in some way, in some form, will continue on forever, with or without me. I can choose to bemoan it, ignore it, or deny it, but no matter what I do life still passes me by. Some days I sleep through it. Other days I try to press my legs and arms against its walls and stop it, like on the three story slide at the haunted house that nearly ripped my ankle in two. There are times I wish there was more, that I could do more with what I've been given, and know that surely on Judgement Day when our statistics are read I will have spent 96.8% of my life sleeping. My mind says there is no reason I shouldn't be able to go to work, to clean the kitchen, to weed the garden, but the moment I try it my body rejects such things. There is hell to pay if I do not heed that rejection; first the pain, then the stiffness, then the tiredness, all of which can have pepperings of nausea, lightheadedness, dizziness, and other random idiocy throughout the day. At least once I will feel this is it, this is the end. Or at least this is where I'm going to faint. Half of my illness seems to be the fear of getting sick in front of other people, the other half the fear of getting sick and being alone. How do you be friendly to others, how do you have a social life, even an outdoor life, when at any moment a stabbing pain could shoot through your body, or you could lose control of any function, or even collapse? How do you go about your daily business when there are things like the temperature, sunlight, blood glucose/blood pressure, where's-the-nearest-bathroom, and-do-these-people-have-a-defibrillator, to worry about? Why does everything feel like such an ordeal, whether it be simply mailing a letter or showing up somewhere you were invited? Today is one of those days I want to say fuck it, who cares, I'm too tired anyway, the world can go to hell.
But the world doesn't give a crap what I say. The world says there are three kids who are getting out of school early and it's going to be storming when I go pick them up. It tells me if anyone ever comes to my house and sees what a hell-hole it's become they'll report it and the county will have it condemned. It reminds me that even though I feel I could lay down and die I'd get no sympathy and that even those who cared the most about it would have to go on. It's required. Time doesn't stop. We have no choice about that.
The only thing we can choose is how loudly we bitch along the way.
But the world doesn't give a crap what I say. The world says there are three kids who are getting out of school early and it's going to be storming when I go pick them up. It tells me if anyone ever comes to my house and sees what a hell-hole it's become they'll report it and the county will have it condemned. It reminds me that even though I feel I could lay down and die I'd get no sympathy and that even those who cared the most about it would have to go on. It's required. Time doesn't stop. We have no choice about that.
The only thing we can choose is how loudly we bitch along the way.
5.04.2009
So Much To Say
I have been away for so long without posting that I'm not sure I can cover everything that's happened in a timely matter. But since I've got time, I guess I'm going to try.
I went to my support group meeting and it was unbelievable for many reasons. I was one of the youngest people there, but suddenly as we began introducing ourselves around the room I realized I was surrounded by others who were talking about MY symptoms, what I have had to go through all these years. But that's the point of a support group, right? So you don't feel like you're the only motherfucker out there with this problem?
The horror of Lyme Disease is that the more people that turn a deaf ear to MY problem, the more people will become infected and ravaged by this terrible illness. In the 80's, the AIDS epidemic began pushing its way to the forefront until it could no longer be ignored. Lyme Disease is like that, and in the midst of denial and rejection and political warfare this sickness is going to keep spreading. We'll pass it to our family members and children through blood to blood contact, we'll be ridiculed by doctors who aren't familiar with its travesties, we'll be bullied by our insurance companies and denied treatment. What will it take to break this cycle? And what was so strange about sitting in that chair listening to everyone else's stories was that if someone had acknowledged what was happening to us in the beginning, it could have all been avoided. Over and over again I hear this: "I had the tick, the rash, and the symptoms, even tested positive, and my doctor said it wasn't Lyme Disease." Or: "I've been diagnosed with (enter 10 generic catchall diseases of your choice here) and finally found out it was Lyme." Or: "One minute I was fine, the next I couldn't (insert normal everyday bodily function here)." And the saddest fact is that Lyme Disease, caught early, can be easily treated. Yet the denial goes on and on.
My own doctor seems to have resigned to the fact that I'm a difficult patient and can't be helped. My meds were stopped because of the hives, and for a week I floundered between ill and okay, then promptly developed an icky secondary infection thanks to the antibiotics. With that overwith, I did gain a small victory with convincing the good doc to test me for co-infections (caused by other germs ticks carry) and will hear the results of those in a few days. Either way I will probably end up at KU Hospital and those catchall generic diseases will be on my roster as well.
My midline catheter was removed today, and quite easily, I'm afraid to say. In spite of the ordeal it took to insert it, the nurse simply sat me down, unhooked the tube, and slid the line out of my vein in all of two seconds time. The only sign it was there is the massive tape burn and probably a permanent tiny hole in my arm, but I can't get my hopes up yet. The catheter will surely go back in before too much time has gone by.
Today my daughter and I went around town doing various errands and I was surprised that a full four hours passed and I was able to keep going even through long walks and carrying things. Everyday I suffer the short-term memory fart of thinking my symptoms are new and frightening, when really it's the same shit I've been dealing with all along. It comes on like a slow storm, and I can feel it moving closer and closer. Some days it's even like I wake up in wet cement, and as the hours progress that cement hardens, stiffening my joints and muscles till I can no longer move or function properly. Some days, like today, it's like a wave, starting with the slightest hint of pain in my legs, engulfing me in flu-like feverishness and fatigue, then rolling over me and leaving me washed up and beached. Then there are the days it's like a hurricane, hitting before I can even evacuate my bed in the morning, knocking me over and sending my life crashing like debris all over the place. There are the hours when I twitch incessantly, when the noise from my surroundings and the sight of it and the smells are just too loud. Two hours later I'm the perfect picture of health, doing the dishes and making lunch. By evening I can't remember what I did all day, or where the bathroom is. And facing anything is like looking up a tall, slick hill I'll never be able to climb.
I've gone through phases after learning of my diagnosis, phases that have surprised me, phases that have been predictable, that have allowed me to accept what inevitably must be true. It is not unlike other tragedies and what they bring in their wake. At first I was in denial, that I had this, that it had done this to me, that this could be the answer I'd been looking for all this time. Then I had to cling to it, to really milk it for everything I could and acknowledge that this was the thing to blame for everything. Now I must move past it, and realize that it's no different knowing its name. I have struggled with this for so long, that's it's really just a part of everyday life for me. What that means I will always be finding out.
I went to my support group meeting and it was unbelievable for many reasons. I was one of the youngest people there, but suddenly as we began introducing ourselves around the room I realized I was surrounded by others who were talking about MY symptoms, what I have had to go through all these years. But that's the point of a support group, right? So you don't feel like you're the only motherfucker out there with this problem?
The horror of Lyme Disease is that the more people that turn a deaf ear to MY problem, the more people will become infected and ravaged by this terrible illness. In the 80's, the AIDS epidemic began pushing its way to the forefront until it could no longer be ignored. Lyme Disease is like that, and in the midst of denial and rejection and political warfare this sickness is going to keep spreading. We'll pass it to our family members and children through blood to blood contact, we'll be ridiculed by doctors who aren't familiar with its travesties, we'll be bullied by our insurance companies and denied treatment. What will it take to break this cycle? And what was so strange about sitting in that chair listening to everyone else's stories was that if someone had acknowledged what was happening to us in the beginning, it could have all been avoided. Over and over again I hear this: "I had the tick, the rash, and the symptoms, even tested positive, and my doctor said it wasn't Lyme Disease." Or: "I've been diagnosed with (enter 10 generic catchall diseases of your choice here) and finally found out it was Lyme." Or: "One minute I was fine, the next I couldn't (insert normal everyday bodily function here)." And the saddest fact is that Lyme Disease, caught early, can be easily treated. Yet the denial goes on and on.
My own doctor seems to have resigned to the fact that I'm a difficult patient and can't be helped. My meds were stopped because of the hives, and for a week I floundered between ill and okay, then promptly developed an icky secondary infection thanks to the antibiotics. With that overwith, I did gain a small victory with convincing the good doc to test me for co-infections (caused by other germs ticks carry) and will hear the results of those in a few days. Either way I will probably end up at KU Hospital and those catchall generic diseases will be on my roster as well.
My midline catheter was removed today, and quite easily, I'm afraid to say. In spite of the ordeal it took to insert it, the nurse simply sat me down, unhooked the tube, and slid the line out of my vein in all of two seconds time. The only sign it was there is the massive tape burn and probably a permanent tiny hole in my arm, but I can't get my hopes up yet. The catheter will surely go back in before too much time has gone by.
Today my daughter and I went around town doing various errands and I was surprised that a full four hours passed and I was able to keep going even through long walks and carrying things. Everyday I suffer the short-term memory fart of thinking my symptoms are new and frightening, when really it's the same shit I've been dealing with all along. It comes on like a slow storm, and I can feel it moving closer and closer. Some days it's even like I wake up in wet cement, and as the hours progress that cement hardens, stiffening my joints and muscles till I can no longer move or function properly. Some days, like today, it's like a wave, starting with the slightest hint of pain in my legs, engulfing me in flu-like feverishness and fatigue, then rolling over me and leaving me washed up and beached. Then there are the days it's like a hurricane, hitting before I can even evacuate my bed in the morning, knocking me over and sending my life crashing like debris all over the place. There are the hours when I twitch incessantly, when the noise from my surroundings and the sight of it and the smells are just too loud. Two hours later I'm the perfect picture of health, doing the dishes and making lunch. By evening I can't remember what I did all day, or where the bathroom is. And facing anything is like looking up a tall, slick hill I'll never be able to climb.
I've gone through phases after learning of my diagnosis, phases that have surprised me, phases that have been predictable, that have allowed me to accept what inevitably must be true. It is not unlike other tragedies and what they bring in their wake. At first I was in denial, that I had this, that it had done this to me, that this could be the answer I'd been looking for all this time. Then I had to cling to it, to really milk it for everything I could and acknowledge that this was the thing to blame for everything. Now I must move past it, and realize that it's no different knowing its name. I have struggled with this for so long, that's it's really just a part of everyday life for me. What that means I will always be finding out.
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