I can't believe it has been so long since I last posted. However, that tells a tale in itself - I have not been well. On Twitter I often update about what "pattern" I am experiencing so I thought it would be a good idea to explain it. I'm not sure if it happens to others with Lyme but being aware of these ebbs and flows and familiar clusters of symptoms gives me piece of mind when that mind is sounding the "you've never felt this sick before!" alarm. It gives me a bullet for my anxiety to look back on what I've written and answer, "Yes, I have, last Thursday I thought I was dying too." They may last a few hours or even days, they may cycle in and out and overlap each other several times in 24 hours, or I might have a wonderful mosaic of a few at the same time. However they choose to manifest themselves, placing them in a category I can identify and predict will go a long way to management of symptoms I may suffer for the rest of my life. So without further ado these are the patterns I have noticed my body goes through. If you have Lyme too you may be able to relate. If you don't, what you're about to read may be horrifying. If you're not sure, you may recognize something that will motivate you to find the help you desperately need.
First, and most commonly, there is the Fatigue Pattern. This pattern causes me to sleep all night and wake up feeling like I never slept at all. It is sneaky and can creep up when I least expect it, and is often very hard to resist. Rather than feeling as if I'm falling asleep, I may have the sensation of being dragged kicking and screaming. Fatigue Pattern's favorite thing is to make me feel lazy over what I can't do and...I yawn ALOT. Sometimes I have yawning FITS. While fatigue itself is almost always there, the Fatigue Pattern is like a living breathing creature from the bowels of hell. When this thing is going on, there's not a damn thing gonna get done in my house.
Contrary to Fatigue Pattern, Insomnia Pattern doesn't care if I'm tired. I can be up all night, completely exhausted, begging and praying for sleep, and Insomnia Pattern just laughs in my face. Sometimes it switches things up and creeps into the daytime as well, or pounces on me after I've slept a little and have gotten out of bed in the middle of the night to go to the bathroom or get a drink. I suspect there are times it even shakes me awake, the little devil, just for kicks. Insomnia Pattern is often peppered with episodes of anxiety, mood swings, and tachycardia.
Up next is the Herx Pattern (named for the "Herxheimer" reaction), which for me has come on like both a lion and a lamb, aggressive or gradual, but always a surprise, nonetheless. Surprising because for me it is an exacerbation of my "typical" Lyme symptoms, along with enervating episodes of Parkinsons-like tremors, extreme brain fog, emotional instability, and just generally feeling like my entire body is about to implode. I rarely run a fever but some have reported a spike in that area, although I do feel as though my temperature is up; glossy eyes, flushed face, chills followed by hot flashes. But lets not get ahead of ourselves. Because these symptoms also cross over into something else, something horrible, and my least favorite pattern of all.
That's right, I'm referring to the Flu Pattern, and this one is like an onslaught of Lyme symptoms and the worst seasonal illness I've ever had. Strangely enough the Flu Pattern doesn't last long, but its vengeance is solid and true. I have noticed in my records it assaults me approximately every two weeks, and each time I am convinced that I am expiring anew. The normal progression of flu over the course of a couple of weeks tends to be that feeling of "coming down" with something, a tickle in the throat to fever, body aches and chills, but the Flu Pattern's hell rushes on within hours. It leaves no time to recover or comprehend, no time to mentally prepare. A typical flu sufferer's symptoms build to a gradual peak, then plateau, then die off, all in a luxurious length of time. Flu Pattern is like a truck hitting, a literal frenzy of illness that strikes and then drops off much like its typical counterpart, leaving that post-feverish, warmed over, finally-just-enough-strength-to-shower feeling. All that and my temperature never gets over 95 degrees.
Last but not least, there is the Well Pattern, and this one can be short and sweet as well. But its consequences can be devastating because of its deceiving, evasive nature. One morning I woke up thinking, No pain, no symptoms, what a beautiful day. It led me to believe that it was possible I could be cured. It made me wonder what I had been bitching about and why life for me had become such a struggle. It slapped me in the face and said "Get over yourself! You're fine!" It made me go back to work and allowed me to get things done around the house. But in the end, it too left me out in the cold. Yet of all the patterns, I have to say I cannot hate this one equally. Maybe it isn't a pattern at all. Maybe it's a glimpse that I can have my life back one day, or, at the very least, a little blessing I should be taking full advantage of when it graces me.
So how about those patterns, huh? Are there any that I missed? I'd like to hear some comments on these, and how everyone else copes with them. And I'd like to know I'm not just overthinking, or in my hope to get control of these, thinking wishfully either.
6.12.2009
5.31.2009
The Good Doctor
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?
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?
5.16.2009
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.
4.23.2009
A Fork In the Road
The realization of the trouble I was going to have getting proper treatment for this disease has come on slowly and painfully to say the least. For the last few days I have been horribly ill, and there doesn't seem to be an answer for any of it. But where would I even look to find that answer? The doctors have no idea. Nobody knows. I have never had more of a fight ahead of me and less energy to fight with before in my life.
A couple of days ago I came down with what I thought was a stomach virus, as my children were vomiting and feverish and generally ill. My nurse told me to skip my infusion for a day and pick it up again the next, and I felt better when I woke up that morning, better than I had in days. After hooking up my IV I noticed a couple of red raised bumps on my arm, so I watched them and finished up, noting no change. Everything was great for the rest of the day...surprisingly I had a complete absence of pain and fatigue, the realization of which was a testament to how constant those symptoms have been for me. I even went out of the house at about 10 PM to return some DVDs and pick up some cereal for the kids for breakfast the next morning. I couldn't believe it; I was amazed with myself the whole way there.
Things rapidly declined as I entered the grocery store, however. I started to feel light-headed, then remembered I hadn't eaten dinner, as my appetite has been scarce lately. (Still gaining weight like a champ, though, of course.) I decided, especially after the onset of a mini panic attack, that I'd grab a Snickers on the way out and promised myself I'd eat a decent meal as soon as I arrived home. Back at my house I started itching and noticed my arms and legs breaking out in huge, red, swollen welts, and I frantically dialed the doctor's number. The answering service snippily told me if this wasn't a medical emergency, to call back tomorrow morning, so I went to the emergency room. I was now in full panic attack mode, shivering, shaking, with my blood pressure pulsing at 144/92.
I tried to distract myself by watching TV once in the room, and while I waited for the nurses to treat me, thinking angry thoughts about anaphylactic shock that would go unnoticed, I continued to itch and tremble. I should have savored that time before they came in, because when they did, they injected Benadryl and Atarax directly into my IV. I have never felt so awful as I did in the 20 minutes that shit was cycling through my body in its initial waves. As soon as it hit me I quite literally went blind, seeing only white at first, then darkness. I heard myself say "I'm going to pass out" and heard the rails go up on the bed. I was so scared I was sure I was going to die right there of pure fright. My voice was the only thing that was working, and I could barely even hear it over the roaring noise in my head. I tried to lift my arms to fight something, anything, off, but they wouldn't move, and my legs had turned to lead as well. I was told to lie back and breathe, and I just kept thinking that things had never been this bad for me before. Not in three childbirths, hundreds of blood draws, several hospital stays, flus, mono, none of it was as awful as what had just been done to me. If I'd felt like fainting before, this spit in the face of light-headedness and starry vision. This was like something reaching up my nose and turning my brain inside out to induce unconsciousness, and I am trembling now as I type these words just remembering it. It seemed to be the mother of all blackouts but I was probably not completely under; I could still hear my own voice and was trying to control my breathing and just make everything stop, just stop. I had this fear that if I let go I'd wake up with my arms and legs amputated and a tube down my throat. I'm telling you, when I get like this, the imagination knows no bounds.
My eyes were blurry and burning but later only the heavy leadenness and tiredness remained. The emergency room nurse insisted I could not drive home alone, which I tended to agree with right then, and called me a cab (my husband was at home with all three kids, who were sleeping as it was about three in the morning, and who were still ill with the flu). I made it home and the next day still had that heavy feeling, but after visiting with my doctor was told to hold off on any more treatments until he decided what to do. Today I go back to find out if there is an alternative to what I've been going through, and there is so much I don't even know yet to be able to ask him. Surf any online Lyme Disease forum and there is so much information about disease stages and different antibiotics and treatments for co-infections and you just want to hang your head and say "done." So I have a decision to make; let someone else forge the road for me or leave no stone unturned, no question unasked and possibly further delay my treatment in favor of something that actually might work. The thousands of dollars others have spent to find the truth are not dollars I have at my fingertips to spend. The time it would take to sort through all that I may have going on inside is not time my brain can expend. Every day that passes I realize I have been in denial for far too long about what this disease has done to me and what the result will ultimately be if something isn't done. But can I fight for this? Do I have the strength? I can't imagine where it's going to come from. I am so tired, so worn out, that I sometimes wish I'd never even gotten the tests done, never even been diagnosed. Ignorance/bliss, blah blah blah, right?
So today I stand at a crossroads and I have to decide which way I'm going to turn. My doctor's appointment is this afternoon and what I say and ask and do there could make or break my recovery from this disease. I'm scared, I'm confused, and most of all, completely exhausted. What the hell am I going to do?
A couple of days ago I came down with what I thought was a stomach virus, as my children were vomiting and feverish and generally ill. My nurse told me to skip my infusion for a day and pick it up again the next, and I felt better when I woke up that morning, better than I had in days. After hooking up my IV I noticed a couple of red raised bumps on my arm, so I watched them and finished up, noting no change. Everything was great for the rest of the day...surprisingly I had a complete absence of pain and fatigue, the realization of which was a testament to how constant those symptoms have been for me. I even went out of the house at about 10 PM to return some DVDs and pick up some cereal for the kids for breakfast the next morning. I couldn't believe it; I was amazed with myself the whole way there.
Things rapidly declined as I entered the grocery store, however. I started to feel light-headed, then remembered I hadn't eaten dinner, as my appetite has been scarce lately. (Still gaining weight like a champ, though, of course.) I decided, especially after the onset of a mini panic attack, that I'd grab a Snickers on the way out and promised myself I'd eat a decent meal as soon as I arrived home. Back at my house I started itching and noticed my arms and legs breaking out in huge, red, swollen welts, and I frantically dialed the doctor's number. The answering service snippily told me if this wasn't a medical emergency, to call back tomorrow morning, so I went to the emergency room. I was now in full panic attack mode, shivering, shaking, with my blood pressure pulsing at 144/92.
I tried to distract myself by watching TV once in the room, and while I waited for the nurses to treat me, thinking angry thoughts about anaphylactic shock that would go unnoticed, I continued to itch and tremble. I should have savored that time before they came in, because when they did, they injected Benadryl and Atarax directly into my IV. I have never felt so awful as I did in the 20 minutes that shit was cycling through my body in its initial waves. As soon as it hit me I quite literally went blind, seeing only white at first, then darkness. I heard myself say "I'm going to pass out" and heard the rails go up on the bed. I was so scared I was sure I was going to die right there of pure fright. My voice was the only thing that was working, and I could barely even hear it over the roaring noise in my head. I tried to lift my arms to fight something, anything, off, but they wouldn't move, and my legs had turned to lead as well. I was told to lie back and breathe, and I just kept thinking that things had never been this bad for me before. Not in three childbirths, hundreds of blood draws, several hospital stays, flus, mono, none of it was as awful as what had just been done to me. If I'd felt like fainting before, this spit in the face of light-headedness and starry vision. This was like something reaching up my nose and turning my brain inside out to induce unconsciousness, and I am trembling now as I type these words just remembering it. It seemed to be the mother of all blackouts but I was probably not completely under; I could still hear my own voice and was trying to control my breathing and just make everything stop, just stop. I had this fear that if I let go I'd wake up with my arms and legs amputated and a tube down my throat. I'm telling you, when I get like this, the imagination knows no bounds.
My eyes were blurry and burning but later only the heavy leadenness and tiredness remained. The emergency room nurse insisted I could not drive home alone, which I tended to agree with right then, and called me a cab (my husband was at home with all three kids, who were sleeping as it was about three in the morning, and who were still ill with the flu). I made it home and the next day still had that heavy feeling, but after visiting with my doctor was told to hold off on any more treatments until he decided what to do. Today I go back to find out if there is an alternative to what I've been going through, and there is so much I don't even know yet to be able to ask him. Surf any online Lyme Disease forum and there is so much information about disease stages and different antibiotics and treatments for co-infections and you just want to hang your head and say "done." So I have a decision to make; let someone else forge the road for me or leave no stone unturned, no question unasked and possibly further delay my treatment in favor of something that actually might work. The thousands of dollars others have spent to find the truth are not dollars I have at my fingertips to spend. The time it would take to sort through all that I may have going on inside is not time my brain can expend. Every day that passes I realize I have been in denial for far too long about what this disease has done to me and what the result will ultimately be if something isn't done. But can I fight for this? Do I have the strength? I can't imagine where it's going to come from. I am so tired, so worn out, that I sometimes wish I'd never even gotten the tests done, never even been diagnosed. Ignorance/bliss, blah blah blah, right?
So today I stand at a crossroads and I have to decide which way I'm going to turn. My doctor's appointment is this afternoon and what I say and ask and do there could make or break my recovery from this disease. I'm scared, I'm confused, and most of all, completely exhausted. What the hell am I going to do?
4.21.2009
All About the IV
I wanted to write about my experience with getting the IV port put in my arm, and what has gone along with it. I've had it for starting on three weeks now, and it has been emotional. Ever hated something that was supposed to be good for you? Peas? Wearing a bra? Your husband? That pretty much sums up my feelings about this catheter, and it was definitely a huge piece of the reservation cake I was baking when it came to being treated for Lyme Disease.
I went to the Treatment and Procedures Department of the hospital to have it put in. I was alone; I thought it would be no big deal, it would only take a few minutes, and I could handle it on my own. The preparation began: warm blankets, an open-back gown, searching the TV for something effectively distracting (if I don't see the needle, I'm fine). I was getting a Peripherally Inserted Central Catheter, or PICC, meaning a tiny line would be threaded through a vein in my arm that loops above my heart. It would then have a port where I could get blood drawn or hook up my own IV so I could do my treatments myself at home. The ease of care was lost on me; it began to sound alarmingly invasive. I mulled it over as the nurses gathered their tools beyond the curtain.
A nurse came in and read to me from an informational pamphlet, and when she was done I realized I had just been pitched. Looking down at the pamphlet the complications seemed to be in huge type, and in absolutely enormous letters was a sentence that read something about a DNR order being waived for this procedure only. Sign here, saying you agree.
Is that what I should be worried about? I wondered. Nothing could dwarf the ignoring my right to not be resuscitated like doing something that would require me to be resuscitated in the first place! Shit, what had I gotten myself into? And with no one here with me to tell me how irrational I was for being scared of it!
What if a tiny poke was all the motivation my continuously palpitating heart needed to flop over and die? What if the nurse (not only a longtime technician but a one-time patient as well) accidentally pierced my vein and I bled to death in 7 seconds? What if one of those complications so enormously printed in the pamphlet happened and I was too ignorant to recognize it before it was too late? After grilling the nurse tearfully about other options, I nodded vigorously when offered a midline instead. I didn't know what the hell a midline was, but at least I didn't need to sign a paper about DNRs and the possibility of blood clots.
The nurses went about creating a sterile room. This was serious business. They draped me with sterile cloths, dressed in robes and masks. I tried to watch TV. My arm was washed with soap and water and swabbed with cold alcohol. An ultrasound was done and my arm marked for ease in differentiating vein from artery, and I felt a little poke as the numbing solution was administered, ironically enough. A big pinch as the catheter punctured the outer wall of the vein and then a few minutes of feeling nothing but a little pressure just above my elbow and they were done. They bandaged me, reassured me, and let me lay still for a bit so I could settle down and get my head together. Then I was off to the doctor's office to get my first IV treatment and a little bit of training on how to do it myself. I drove over there with no problems, just the normal tiny amount of discomfort that comes from having a foreign object sticking out of your skin.
While learning to infuse myself I found out a midline was the exact same thing as the PICC, only the line is about two inches shorter. It figures.
(*The picture above is owned by http://www.drugs.com/cg/peripherally-inserted-central-catheters-and-midline-catheters.html)
The first week was the worst; the discomfort in my arm was constant, and if I didn't turn just right it would pinch or pull and I had difficulty moving because of that. The first time I rolled over on it in my sleep and woke up with tingling fingers I panicked. I have to shower with a huge plastic glove that goes all the way to my shoulder roped off by a tight rubber band. (I could make it easier on myself and use Saranwrap, but I'm stubborn.) When I had the bandage changed the nurse's alcohol swab burned as if I'd stuck my arm in a fire. The hole in my arm oozed and my arm swelled. My fingers began to swell on my first treatment, and because I'm taking a penicillin derivative and am allergic to penicillin, I was apprehensive, to say the least, also unnecessarily. I was hyper vigilant and a pest to the nurses and learned to deal with all of it. But the truth is, it isn't worse than living with the symptoms of Lyme Disease. If this is all I have to suffer with to get rid of that, I think I'll take that any day.
Week two had me calling the nurse because I had some reddish-purple marks on my skin near the entry-point in my arm; apparently I had been moving around a little much and caused some slight bruising. The second bandage change was great...the damn thing itched so bad that the alcohol was like a giant scratching brush...it was just AAAAHHHHHH. My arm was still swollen but now the nurse put what I think she called a bio-patch on the wound to help with the oozing; now I didn't have to look at the hole anymore and everything seemed cleaner. At the beginning of week three now the bandage still itches something awful...but the pain and discomfort seems to have lessened considerably. I pull it around, the kids climb on me and bump it and for the most part, it's become like an extension of my body.
It is really easy to use, just as they told me it would be. I simply thaw my medicine for about an hour, clean the head of the tube with an alcohol pad (it has a valve to keep air from getting inside), flush with a syringe of saline, hook in the medicine, and sit still for about 30 minutes, watching TV, or I can even type. Then I unhook, flush with saline again, wrap it around my arm, and put it away under the little mesh-like sleeve that hides it. I'll post pictures at a later date, which may be helpful. With Lyme it is imperative that what you have to do be simple and easy to remember, and even on my worst days I barely have trouble with it at all.
It is also definitely itchy, annoying, and cumbersome, but not unbearable. Just as it becomes completely forgettable it will be time to take it out...and God help me that day, and the nurses who have to deal with me.
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