MIGRAINE!!!!!
Ah, spring....
Announcing Segullah November 2025 issue
8 months ago
Saturday, March 12, 2011
Wednesday, March 9, 2011
Why can a single note from a teacher
send me hiding into my bedroom, certain I'm failing my children? Educationally, at least. There are so many other ways I'm heroic in parenting. For example, I got up this morning.
If you're not a Lyme patient, you might not understand how that is heroic. Let me explain. Before I open my eyes, waking slowly, I perform a body assessment of what is going wrong. Stomachache? no. Backache? Probably. Too bad to raise head? Hmm... probably extra pain medicine this AM. The litany continues to my feet, which finally hit the ground and then walk down the hall to wake E and A, who are aligning their own daily symptom list. Not being very self aware yet, being 8 and 9.75 yrs respectively, they tell me that today they feel way too horrible to go to school.... every day. And they're probably right, except I intend them to get an education, so I make them get up, even though they are far too groggy to stand, make them dress, drag myself towards my pain medicine and downstiars, make breakfast, etc, etc.
So, our first ten minutes of every day is spent evaluating- can I get up? Can I will myself TO get up? Yes, and I will get up. But I don't "feel like it." And that's the difference between being temporarily sick and being permanently sick- you don't feel like it, and you quite possibly never will feel like it, but you're going to do it anyway. That applies to pretty much everything.... waking, lunch, diapering and washing children, laundry, making dinner, brushing your teeth, taking a shower, sex, going to sleep at night , leaving the house, fulfilling callings and getting up for church. You do it Anyway, because otherwise nothing, ever, will actually get done.
And when you're the Mama, and the world revolves only as fast as you push it, you have to get going and get things done.
Which brings us to the note about how frustrated A's teacher gets when he is out of class and makes up work slowly over time, along with keeping up with his regular homework. They want him in AEP (our version of "gifted and talented") next year; he qualifies. But, his trickle in work is a problem. She is always having to take our her grading book, he's always getting things updated, it so frustrating for her. "He has the capability to do his work more quickly, and keep caught up." ie- not living up to expectations.
I was really proud of myself. I absolutely did not say, "Poor You. How hard this must be for You." I apologized, instead, and got my son to finish his makeup work for the three days he missed last week with a sinus infection.
Which, in the end, is good, as the makeup work is MY fault. It's all my fault. He's eight, and he's got neurological "issues," meaning if I can ge tthis herd of cats to do anything it's amazing, and I'm usually focused on his sister, who is awesome, and scattered, like her Mama. A's focus involves Legos and scouts, in that order, nothing else. So, it's my business to drive him onward to finish.
But I'm driving myself onward to finish, to actually put in a load of dishes in the dishwasher, to actually pick up the floor in a room. And my driving circuits are therefore overloaded. Don't get me started about taking a wikiwalk through something entertaining to keep my mind off the pain and sick, and how long that can distract...or the novels, or the naps involved.
I feel overwhelmed, even though he's technically caught up. Lots of those I know, facing this illness in their children, would go to the most logical conclusion for a reasonably adept or educated parent- to homeschool the immune disabled children instead, killing two birds (the immune kids's exposure, and the capability to progress at a different pace) with one stone. But as a mother focused on waking up in the morning, and dealaying said process as long as possible, my kids would not be homeschooled... they would be unschooled and uneducated, except by PBS and NPR. In the end, they might get an unconventional education, but while my pre-illness self was a chalk drawing, craft doing, music and singing, dancing, cutting out puppets with pinking shears kind of mom-to-be, my post LD self is more ...we'll say laid back, but really, sick, exhausted, and lazy is the truth. My kids would have no learning, and again, I would be responsible.
Wherein does the solution lie? Much prayer will be upon this in the next few weeks....
If you're not a Lyme patient, you might not understand how that is heroic. Let me explain. Before I open my eyes, waking slowly, I perform a body assessment of what is going wrong. Stomachache? no. Backache? Probably. Too bad to raise head? Hmm... probably extra pain medicine this AM. The litany continues to my feet, which finally hit the ground and then walk down the hall to wake E and A, who are aligning their own daily symptom list. Not being very self aware yet, being 8 and 9.75 yrs respectively, they tell me that today they feel way too horrible to go to school.... every day. And they're probably right, except I intend them to get an education, so I make them get up, even though they are far too groggy to stand, make them dress, drag myself towards my pain medicine and downstiars, make breakfast, etc, etc.
So, our first ten minutes of every day is spent evaluating- can I get up? Can I will myself TO get up? Yes, and I will get up. But I don't "feel like it." And that's the difference between being temporarily sick and being permanently sick- you don't feel like it, and you quite possibly never will feel like it, but you're going to do it anyway. That applies to pretty much everything.... waking, lunch, diapering and washing children, laundry, making dinner, brushing your teeth, taking a shower, sex, going to sleep at night , leaving the house, fulfilling callings and getting up for church. You do it Anyway, because otherwise nothing, ever, will actually get done.
And when you're the Mama, and the world revolves only as fast as you push it, you have to get going and get things done.
Which brings us to the note about how frustrated A's teacher gets when he is out of class and makes up work slowly over time, along with keeping up with his regular homework. They want him in AEP (our version of "gifted and talented") next year; he qualifies. But, his trickle in work is a problem. She is always having to take our her grading book, he's always getting things updated, it so frustrating for her. "He has the capability to do his work more quickly, and keep caught up." ie- not living up to expectations.
I was really proud of myself. I absolutely did not say, "Poor You. How hard this must be for You." I apologized, instead, and got my son to finish his makeup work for the three days he missed last week with a sinus infection.
Which, in the end, is good, as the makeup work is MY fault. It's all my fault. He's eight, and he's got neurological "issues," meaning if I can ge tthis herd of cats to do anything it's amazing, and I'm usually focused on his sister, who is awesome, and scattered, like her Mama. A's focus involves Legos and scouts, in that order, nothing else. So, it's my business to drive him onward to finish.
But I'm driving myself onward to finish, to actually put in a load of dishes in the dishwasher, to actually pick up the floor in a room. And my driving circuits are therefore overloaded. Don't get me started about taking a wikiwalk through something entertaining to keep my mind off the pain and sick, and how long that can distract...or the novels, or the naps involved.
I feel overwhelmed, even though he's technically caught up. Lots of those I know, facing this illness in their children, would go to the most logical conclusion for a reasonably adept or educated parent- to homeschool the immune disabled children instead, killing two birds (the immune kids's exposure, and the capability to progress at a different pace) with one stone. But as a mother focused on waking up in the morning, and dealaying said process as long as possible, my kids would not be homeschooled... they would be unschooled and uneducated, except by PBS and NPR. In the end, they might get an unconventional education, but while my pre-illness self was a chalk drawing, craft doing, music and singing, dancing, cutting out puppets with pinking shears kind of mom-to-be, my post LD self is more ...we'll say laid back, but really, sick, exhausted, and lazy is the truth. My kids would have no learning, and again, I would be responsible.
Wherein does the solution lie? Much prayer will be upon this in the next few weeks....
Tuesday, March 8, 2011
What's the Good Test, part 2
So, on to the "good test". There is a lab in California, Igenex, which specializes in Lyme disease western blots, shows ALL the bands on the DNA bloodwork so you can see them and your doc can make educated (hopefully, if he's what we call Lyme literate, and knows what he's doing) and also reads thousands of these things a year. They also do the co-infection panels, because the same tick that gives a person Lyme can give them, at the same time, up to seven other infections. I have two, but I had originally three, including a mycoplasma in my system that my docs found two years before they found the Lyme. should have been a big tip off, but wasn't... too several more years of my won research to find the real cause.
All of that said... I was CDC negative, Igenex positive, and we only figured that part out because my doc's office called and said my test came back negative (pre-Lyme literate doctor) and when I, in tears, told Noah he said "No. The spirit witnessed to us that this was the answer. I want to see it for myself." He got them to fax over the results, and right under CDC negative (duh) it said "positive." He called me and we both sorrowed and rejoiced... it is so nice to know the name of the monster you are fighting, even if it is a mythological beast come real. The trouble with treating Lyme for a couple of months, with a single antibiotic, is that it can happily encase itself in a hard shell, hide until the antibiotics are gone, and then resurface to wreak more havoc. It can change its protein form from standard to spirocete. Cousin to it's evil friend, syphilis. Lyme is a beast.... but it is a beast that, if not kill completely, you can at least place in chains in the basement. It tries to escape periodically, and you beat it back, but it doesn't have to kill you....not if you care for it.
It has to get diagnosed, though, because without treatment, the effects are astonishing. Besides infertility, if it doesn't kill of the egg in your womb, it can pass through the placenta an happily infect your unborn child- I have two of mine who are Lyme positive, the third as yet untested, but with no symptoms (knock wood.) It can cause memory loss, palsy, and dementia rivaling Alzheimer's if left untreated. It can kill, but just like early AIDS patients (whose fight for recognition eerily mirrors that fight we face for Lyme recognition and treatment) sufferers are written down as death from pneumonia, or flu, or other things that get in and butcher when the immune system is overloaded or down. Unlike AIDS, though, antibiotics beat back the problem, though there is much discussion over whether it kills it off completely. I have an aunt who was treated quickly after a tick bite with full scale doxycycline in Iv form, the best treatment for Lyme, which is epidemic in her state, Virginia. She was pronounced clean two years ago, but since has been "reinfected" twice. All her symptoms return, and her immunologist says she must have been bitten by a tick again, as her rash comes back. Other Lyme docs say you can beat it back, but it doesn't take another tick bite to reinfect... it can go into remission and then return any time from a year to thirty years later, the key being to see when the trouble returns and treat again.
Lyme also causes all the the symptoms on the checklist I forwarded, and more. And doctors are missing it everywhere, because they still believe "that's not a problem here. Only those up North get that." Similarly to how AIDS patients in the nineties heard that "that's not a problem here. Only NY and LA." Unfortunately, bacteria and viruses care little for boundaries, between states, between countries, between people. Oh, and Lyme too, can be sexually transmitted.
But the Igenex test isn't covered, usually, by insurance. It's about 380 dollars. It's nasty expensive. But.... if you pray over it and feel like this is the answer for you to do, it is worth every penny to be able to go into a doctor and say "look at this. Now, send me to a specialist, and let's take care of this problem."
hopefully all that was not terribly rambley....I adore you, and I'm so sorry that you even have to suspect this sort of garbage. I want you to be prepared to know the trouble with getting a regular test. If a doc tells you "no big deal, we order the ELISA, it's negative, nope, not getting another test, you don't need one," you have to be educated in all this garbage so you can say "no, I want the other one anyway, humor me." It's so hard to find doctors to feel safe with, who pay attention to you, and it's so hard to get unprogrammed from the -deity complex we have regarding doctors. They are BRILLIANT, and have studied long.... but just as sometimes "when they are learned they think they are wise, and hearken not to the counsel of God, for they set it aside, believing they know of themselves, therefore their wisdom is foolishness and profiteth them nothing," we must be learned in both research and the spirit to know what guidance our family, our lives, our health needs. I hope I'm about the help at all with that, whether this beast is what you are fighting, or it is another.
love you- Tamar
All of that said... I was CDC negative, Igenex positive, and we only figured that part out because my doc's office called and said my test came back negative (pre-Lyme literate doctor) and when I, in tears, told Noah he said "No. The spirit witnessed to us that this was the answer. I want to see it for myself." He got them to fax over the results, and right under CDC negative (duh) it said "positive." He called me and we both sorrowed and rejoiced... it is so nice to know the name of the monster you are fighting, even if it is a mythological beast come real. The trouble with treating Lyme for a couple of months, with a single antibiotic, is that it can happily encase itself in a hard shell, hide until the antibiotics are gone, and then resurface to wreak more havoc. It can change its protein form from standard to spirocete. Cousin to it's evil friend, syphilis. Lyme is a beast.... but it is a beast that, if not kill completely, you can at least place in chains in the basement. It tries to escape periodically, and you beat it back, but it doesn't have to kill you....not if you care for it.
It has to get diagnosed, though, because without treatment, the effects are astonishing. Besides infertility, if it doesn't kill of the egg in your womb, it can pass through the placenta an happily infect your unborn child- I have two of mine who are Lyme positive, the third as yet untested, but with no symptoms (knock wood.) It can cause memory loss, palsy, and dementia rivaling Alzheimer's if left untreated. It can kill, but just like early AIDS patients (whose fight for recognition eerily mirrors that fight we face for Lyme recognition and treatment) sufferers are written down as death from pneumonia, or flu, or other things that get in and butcher when the immune system is overloaded or down. Unlike AIDS, though, antibiotics beat back the problem, though there is much discussion over whether it kills it off completely. I have an aunt who was treated quickly after a tick bite with full scale doxycycline in Iv form, the best treatment for Lyme, which is epidemic in her state, Virginia. She was pronounced clean two years ago, but since has been "reinfected" twice. All her symptoms return, and her immunologist says she must have been bitten by a tick again, as her rash comes back. Other Lyme docs say you can beat it back, but it doesn't take another tick bite to reinfect... it can go into remission and then return any time from a year to thirty years later, the key being to see when the trouble returns and treat again.
Lyme also causes all the the symptoms on the checklist I forwarded, and more. And doctors are missing it everywhere, because they still believe "that's not a problem here. Only those up North get that." Similarly to how AIDS patients in the nineties heard that "that's not a problem here. Only NY and LA." Unfortunately, bacteria and viruses care little for boundaries, between states, between countries, between people. Oh, and Lyme too, can be sexually transmitted.
But the Igenex test isn't covered, usually, by insurance. It's about 380 dollars. It's nasty expensive. But.... if you pray over it and feel like this is the answer for you to do, it is worth every penny to be able to go into a doctor and say "look at this. Now, send me to a specialist, and let's take care of this problem."
hopefully all that was not terribly rambley....I adore you, and I'm so sorry that you even have to suspect this sort of garbage. I want you to be prepared to know the trouble with getting a regular test. If a doc tells you "no big deal, we order the ELISA, it's negative, nope, not getting another test, you don't need one," you have to be educated in all this garbage so you can say "no, I want the other one anyway, humor me." It's so hard to find doctors to feel safe with, who pay attention to you, and it's so hard to get unprogrammed from the -deity complex we have regarding doctors. They are BRILLIANT, and have studied long.... but just as sometimes "when they are learned they think they are wise, and hearken not to the counsel of God, for they set it aside, believing they know of themselves, therefore their wisdom is foolishness and profiteth them nothing," we must be learned in both research and the spirit to know what guidance our family, our lives, our health needs. I hope I'm about the help at all with that, whether this beast is what you are fighting, or it is another.
love you- Tamar
"What's The Good Test," part 1
Symptom Checklist: http://www.lymedisease.org/resources/pdf/Symptomchecklist%20burrascano.pdf
yeah, it's all sounding familiar, right?
Well, there's a huge controversy around Lyme disease... like celiac, it can be over diagnosed, but, like celiac, it can be woefully underdiagnosed, you know? I know you know all about the GF stuff, the controversy, people saying "well, you're probably not _really_ having this issue, etc, when the GOOD test shows you are, not just the "stop eating it and see if it gets better" bit.
Ah, already, you are having the "loooovely" "good doctor/bad doctor" bit. I LOVE the ones who pat you on the head and tell you to just go take a nap, or lose weight, or whatever. So encouraging.
I know, the questions are huge after reading some of the stuff. I hope I can help answer them, lol. Most of the info I love is from Dr Burascano's position paper. If you google that and read it, you will have jsut about everything I know, lol. And, it's a great paper, so there's that. However, If you've having memory problems, then you might want to hand it over to your sweetie and let him read it, too, and discuss it.
The good test for Lyme is Not the standardized western blot, which is what most docs think it is. The ELISA, which is the first test the usually run, is vastly inaccurate after about six months of illness... I'm figuring you've gotten to that point, as desperation somewhat has set in, (not that you've lost hope, you've just been facing this long enough to feel the ARGH!). Meanwhile, the standard western blot, ie the CDC positive they want you to have, becomes elusive at about six months as well. If not impossible to begin with. The breakdown is this: about 25 years ago, there was a possibility of a vaccine against Lyme disease, and everybody got very excited. At that point, Lyme wasn't as badly widespread as it is now, and they thought it was isolated to the NE sector of the US... which it wasn't (dang ticks and deer they feed off of. They just don't pay attention to those big red boundary lines on maps. So stupid, won't stay put in Connecticut...I got infected in upstate SC, at girl's camp, about 22 years ago. so yeah.) In order to do the CDC trials for the vaccine, they needed clear-cut standards for testing. Lyme does not like clear-cut standards, and is not conducive to little happy boxes to tape it in. However, they didn't know that so much then (they being modern medicine, I guess, which is only just catching on to this problem Now....) and decided that since lots of people with Lyme tested positive with five bands infected on the DNA western blot test, they would make it, for the sake of testing a recommendation that that be a way to diagnose Lyme, so that a)people would know if the vaccine was working int he trials, and b)doctors would have it easier. However, they warned in the recommendations (notice- NOT diagnosis guidelines. ONLY recommendations.) that this Not be used to exclude diagnosis for persons who have symptoms, as Lyme is nebulous, etc. They warned to diagnose symptomatically.
The vaccine was a bust, but the recommendations were still on the books. in fact, the vaccine was shown to make it easier to get Lyme, possibly even creating the disease in the test subjects. But it was too late for the medical community... the chance of an easy diagnosis and clear standards were too pleasing.
Unfortunately, as soon as they stuck recommendations down that to have Lyme disease you needed to have a bulls eye rash (now found, less that 50% of patients have, or found, or saw the bulls eye rash), and you have the clear onset of symptoms (nope, not really, and some get them gradually, or get only some symptoms, or just weird ones. Which is why the commercials that say "depression hurts, "peeve me... I worry about all those people who think oh, I'm depressed and hurting, so I take a depression medicine that will make it better,' and then never find the reason behind the hurt...) AND most crucially, who have FIVE bands on the Western Blot, and if they have those five bands are CDC positive, and then can get treatment. Anyone else, no treatment ("you don't have this, no CDC positive.")
In the past 25 years, however, hat has been figured out thus far, boiled down, is this: you don't have to have five bands. It matters WHICH bands are positive. Most tests only show "positive" or "negative," but don't show the doctors which bands. Many labs never run more than a few Western Blots a year, and they can be harder to read, as well. Not only that, but some studies show that while many MEN who have Lyme disease, or those tested in the first six months to a year, have the necessary five bands, most women and children have only four bands positive, or even three, and therefore, after that six month window of illness (and, if it comes on gradually, that's hard to fit into) the western blot, CDC style, gets really inaccurate... about sixty percent accurate according to some studies done by Lyme disease organizations. Worse, in the past three years a little study came out form the IDSA which said "there's no such thing as chronic Lyme disease, nobody needs to be treated for long periods, three weeks to six weeks of antibiotics, amoxicillin, should do the trick." OH, my goodness... this was a MASSIVE scandal... all the people who suffer from chronic Lyme disease found themselves cut off from treatment, many doctors who treat Lyme exclusively, whether charlatans or not (and there are jokers, but a lot of good immunologists, too) were cut off from treating patients or lost ability to bill insurance, and hilarity ensued. This part happened about four years ago (about a year into my treatment, of course) and since then, the IDSA panel who made this "further recommendation" was shown to have massive problems- ten of the twelve researchers were actively researching FOR insurance companies, had taken bribes, etc. It was bad. But the problem stands, because as long as insurance doesn't want to pay for extended treatment, it doesn't have to... sort of. There are some ways around it, but it's expensive and really annoying.
To be cont...:
yeah, it's all sounding familiar, right?
Well, there's a huge controversy around Lyme disease... like celiac, it can be over diagnosed, but, like celiac, it can be woefully underdiagnosed, you know? I know you know all about the GF stuff, the controversy, people saying "well, you're probably not _really_ having this issue, etc, when the GOOD test shows you are, not just the "stop eating it and see if it gets better" bit.
Ah, already, you are having the "loooovely" "good doctor/bad doctor" bit. I LOVE the ones who pat you on the head and tell you to just go take a nap, or lose weight, or whatever. So encouraging.
I know, the questions are huge after reading some of the stuff. I hope I can help answer them, lol. Most of the info I love is from Dr Burascano's position paper. If you google that and read it, you will have jsut about everything I know, lol. And, it's a great paper, so there's that. However, If you've having memory problems, then you might want to hand it over to your sweetie and let him read it, too, and discuss it.
The good test for Lyme is Not the standardized western blot, which is what most docs think it is. The ELISA, which is the first test the usually run, is vastly inaccurate after about six months of illness... I'm figuring you've gotten to that point, as desperation somewhat has set in, (not that you've lost hope, you've just been facing this long enough to feel the ARGH!). Meanwhile, the standard western blot, ie the CDC positive they want you to have, becomes elusive at about six months as well. If not impossible to begin with. The breakdown is this: about 25 years ago, there was a possibility of a vaccine against Lyme disease, and everybody got very excited. At that point, Lyme wasn't as badly widespread as it is now, and they thought it was isolated to the NE sector of the US... which it wasn't (dang ticks and deer they feed off of. They just don't pay attention to those big red boundary lines on maps. So stupid, won't stay put in Connecticut...I got infected in upstate SC, at girl's camp, about 22 years ago. so yeah.) In order to do the CDC trials for the vaccine, they needed clear-cut standards for testing. Lyme does not like clear-cut standards, and is not conducive to little happy boxes to tape it in. However, they didn't know that so much then (they being modern medicine, I guess, which is only just catching on to this problem Now....) and decided that since lots of people with Lyme tested positive with five bands infected on the DNA western blot test, they would make it, for the sake of testing a recommendation that that be a way to diagnose Lyme, so that a)people would know if the vaccine was working int he trials, and b)doctors would have it easier. However, they warned in the recommendations (notice- NOT diagnosis guidelines. ONLY recommendations.) that this Not be used to exclude diagnosis for persons who have symptoms, as Lyme is nebulous, etc. They warned to diagnose symptomatically.
The vaccine was a bust, but the recommendations were still on the books. in fact, the vaccine was shown to make it easier to get Lyme, possibly even creating the disease in the test subjects. But it was too late for the medical community... the chance of an easy diagnosis and clear standards were too pleasing.
Unfortunately, as soon as they stuck recommendations down that to have Lyme disease you needed to have a bulls eye rash (now found, less that 50% of patients have, or found, or saw the bulls eye rash), and you have the clear onset of symptoms (nope, not really, and some get them gradually, or get only some symptoms, or just weird ones. Which is why the commercials that say "depression hurts, "peeve me... I worry about all those people who think oh, I'm depressed and hurting, so I take a depression medicine that will make it better,' and then never find the reason behind the hurt...) AND most crucially, who have FIVE bands on the Western Blot, and if they have those five bands are CDC positive, and then can get treatment. Anyone else, no treatment ("you don't have this, no CDC positive.")
In the past 25 years, however, hat has been figured out thus far, boiled down, is this: you don't have to have five bands. It matters WHICH bands are positive. Most tests only show "positive" or "negative," but don't show the doctors which bands. Many labs never run more than a few Western Blots a year, and they can be harder to read, as well. Not only that, but some studies show that while many MEN who have Lyme disease, or those tested in the first six months to a year, have the necessary five bands, most women and children have only four bands positive, or even three, and therefore, after that six month window of illness (and, if it comes on gradually, that's hard to fit into) the western blot, CDC style, gets really inaccurate... about sixty percent accurate according to some studies done by Lyme disease organizations. Worse, in the past three years a little study came out form the IDSA which said "there's no such thing as chronic Lyme disease, nobody needs to be treated for long periods, three weeks to six weeks of antibiotics, amoxicillin, should do the trick." OH, my goodness... this was a MASSIVE scandal... all the people who suffer from chronic Lyme disease found themselves cut off from treatment, many doctors who treat Lyme exclusively, whether charlatans or not (and there are jokers, but a lot of good immunologists, too) were cut off from treating patients or lost ability to bill insurance, and hilarity ensued. This part happened about four years ago (about a year into my treatment, of course) and since then, the IDSA panel who made this "further recommendation" was shown to have massive problems- ten of the twelve researchers were actively researching FOR insurance companies, had taken bribes, etc. It was bad. But the problem stands, because as long as insurance doesn't want to pay for extended treatment, it doesn't have to... sort of. There are some ways around it, but it's expensive and really annoying.
To be cont...:
So, what's the deal with this Lyme thing anyway....
A friend of mine is having nebulously ill symptoms, and her doctors cannot find a thing wrong with her. She is truly having the symptoms, though, although tests have shown nothing thus far. She's having everything weird going on, from strange aches and pains and extreme fatigue, to insomnia, to this weird rash her doc thinks is ringworm and keeps treating, but it only returns a while later. She feels like she has a sinus infection all the time, and has what we Southerners delicately call "intestinal troubles," and her doctor is testing her for chron's and Rheumatoid Arthritis, and Fibromyalgia, and Chronic Fatigue Syndrome (as much as there are tests for those things, which basically mean "I have to acknowledge that you really do hurt and feel nasty, even though I cannot find a thing wrong, I believe you are not lying."). She is getting frustrated. Doctors are telling her that if's she's tired, take a nap, if she's gaining weight, diet more, to severely restrict her diet, to go gluten free, to just Get Over It. No, they don't know why her period's all wonky and she's getting migraines all the time.
In other words,
everything on my personal symptom list.
I didn't know all of this last week. She just posted on FB about how frustrated she was about not being able to find anything wrong, and I mentioned that if she got annoyed and needed to vent about always being sick,. without having anyone judge her or tell her to "buck It Up Little Camper," then she could email and complain to me. I would understand that she had not lost her faith, or her will to live, and I would understand that she just wanted to know WHAT the trouble was so she could do SOMETHING about it. I figured, it's important for all of sickies to stick together. It's hard to need to tell Someone that you hurt more today than yesterday, and yet not make it sounds like "whine whine whiny whine whine." After a while, your spouse really does Not need to hear that, especially when you realize that the sickness is not going anywhere, and, therefore, you cannot make noises every time you hurt for the rest of your life, or else nobody will ever want to be near you again. (PS great book: Chronic Pain and the Family.. More linkies later)
So, she emailed me her note, which sounds so very much like she was stalking me before I was treated. When she wrote about the "we don't know what it is" rash, my personal alarm bells started buzzing like crazy. I sent her "the link." The one I share with all nebulously sick folks. The one that I read and KNEW, at a cellular level, that _this_ was what I was searching to find. Knew in my bones and spirit that, this illness, in one sickness described all of my ailments. Gave me the first original thought in years: could it be that, instead of six thousands things being wrong with me, everything, every symptom for a decade fell under one illness. Well, one illness and co-infections.
So I mailed her the list, link in the sidebar (if I can figure it out) under symptom list, and waited. She immediately wrote back that she felt chills upon reading it, and please tell her more and how to get "the good test."
After writing her back a lengthy letter, I've decided to share it with you, in two parts. It is long. Hopefully it encapsulates portions of the Lyme controversy, the reasons for reading the symptom list, even if you don't have illness, in order to help safeguard those you love. Hopefully, if someone you know falls under this vast umbrella, you can pass the list onward to them. Hopefully, if they read it and feel that bone shaking knowledge fill their heart, they too will feel inspired to find a literate doctor and get "the good test." Of my eleven (thus far) friends with nebulous and hard to diagnose neuromuscular symptoms, seven (SEVEN!) tested Ignex positive for Lyme, got treated in some form, whether using the antibiotic route or herbal route, and are doing on average much better than they were. One, this sweet S who received my letter today, hopefully will be tested soon.
May you and all of your loved ones be safe from this dragon, Lyme, but if you have no diagnosis are are losing both your mind, your body, and your hope, perhaps knowing more of this information in an easier to read format will help restore those things. Of the three, the most essential is hope, but getting the other two back is nice too.
Much love- Tamar
In other words,
everything on my personal symptom list.
I didn't know all of this last week. She just posted on FB about how frustrated she was about not being able to find anything wrong, and I mentioned that if she got annoyed and needed to vent about always being sick,. without having anyone judge her or tell her to "buck It Up Little Camper," then she could email and complain to me. I would understand that she had not lost her faith, or her will to live, and I would understand that she just wanted to know WHAT the trouble was so she could do SOMETHING about it. I figured, it's important for all of sickies to stick together. It's hard to need to tell Someone that you hurt more today than yesterday, and yet not make it sounds like "whine whine whiny whine whine." After a while, your spouse really does Not need to hear that, especially when you realize that the sickness is not going anywhere, and, therefore, you cannot make noises every time you hurt for the rest of your life, or else nobody will ever want to be near you again. (PS great book: Chronic Pain and the Family.. More linkies later)
So, she emailed me her note, which sounds so very much like she was stalking me before I was treated. When she wrote about the "we don't know what it is" rash, my personal alarm bells started buzzing like crazy. I sent her "the link." The one I share with all nebulously sick folks. The one that I read and KNEW, at a cellular level, that _this_ was what I was searching to find. Knew in my bones and spirit that, this illness, in one sickness described all of my ailments. Gave me the first original thought in years: could it be that, instead of six thousands things being wrong with me, everything, every symptom for a decade fell under one illness. Well, one illness and co-infections.
So I mailed her the list, link in the sidebar (if I can figure it out) under symptom list, and waited. She immediately wrote back that she felt chills upon reading it, and please tell her more and how to get "the good test."
After writing her back a lengthy letter, I've decided to share it with you, in two parts. It is long. Hopefully it encapsulates portions of the Lyme controversy, the reasons for reading the symptom list, even if you don't have illness, in order to help safeguard those you love. Hopefully, if someone you know falls under this vast umbrella, you can pass the list onward to them. Hopefully, if they read it and feel that bone shaking knowledge fill their heart, they too will feel inspired to find a literate doctor and get "the good test." Of my eleven (thus far) friends with nebulous and hard to diagnose neuromuscular symptoms, seven (SEVEN!) tested Ignex positive for Lyme, got treated in some form, whether using the antibiotic route or herbal route, and are doing on average much better than they were. One, this sweet S who received my letter today, hopefully will be tested soon.
May you and all of your loved ones be safe from this dragon, Lyme, but if you have no diagnosis are are losing both your mind, your body, and your hope, perhaps knowing more of this information in an easier to read format will help restore those things. Of the three, the most essential is hope, but getting the other two back is nice too.
Much love- Tamar
Monday, February 21, 2011
Potty Training a Child Without Lyme...
Is So Different Than training one with Lyme disease. My two older children, E and A, both have Lyme (infected in the womb), although we didn't know what was wrong until A was two and E was four. The monthly fevers, the crying, the random rashes that doctor's scratched their heads over and said "weren't contagious, probably not a big deal," (but they were), the throwing up, the fatigue and meltdowns... the amplification of every regular thing that two and three year olds do... that is wearing enough on a family. Add not being able to figure out WHY the 103 degree fevers happen once a month --I used to time them. We had a big calender, and I could accurately predict within two days when A would start having night terrors and bed wetting and screaming spells, followed by sunken looking eyes and the big fever for a couple of days. Our docs? Still baffled, until WE told them what was wrong...after my diagnosis. All incredibly demoralizing to a new mom.
But it was also strangley demoralizing as a mother to have a three and a half year old who was not potty trained. We knew they were smart. We knew they were capable. We knew they were sick, too, although we didn't know why yet, when E was that age. Sir was working from hom then, so we had not one but two adults (one able bodied, one, meh.) working on this project. But, although both children, in their own times, trained beautifully for two weeks out of the month, then they would start in with accidents and continue into the fevers, with everything falling apart. Every month... two weeks of training, one week of nastysick, one week of recovery/starting over, lather/rinse/repeat. Nevermind my own sickness- who cares about training when you're too sick to be awake? Let's watch Dora in the recliner while Mama nurses the baby and sleeps, k?
And so... both of my older children trained shortly AFTER they each turned four, when they finally could manage to stay dry all day (mostly) and through the night. SO, when my second child, A, started training at 2, my first child, E, was still in diapers, at 3.7. They still had accidents until they were sevenish, but mostly finished training at four. Two long years, each, overlapping with both training during one of the years. Yowsa.
I felt like a failure as a mother... why could I not get these children potty trained? But at the same time, I felt restrained from doing anything drastic about it, no major missions or yelling at the little ones. It was jsut as frustrating for them as it was for me.... well, almost. I could see how hard they worked at this goal, how much they wanted to be able to do it... and how frustrated they were at being unable to continue when the sickness began. They wanted the joy of being trained almost as much as we did.
Pause four years, and then enters little mr. e- or, Captain America, as we call him. Third child. Post Lyme treatment for me. And, so far, he's symptom free, and just turned two.
Potty training this one? Piece. Of. Cake. He won't wear a diaper and wants to be naked, but he also rarely has accidents. He happily uses the little or big potties interchangeably and tells me when he needs to go. He refuses diapers because he really wants to learn. Is he just a merry little soul?
The lack of Lyme, to me, is a huge difference... there is continuity, no stopping and starting, no giving up as he lies limply in my arms burning with fever. You can't forcibly train a small one as they lie limply in your arms burning at 104 degrees...even if that is regeur for your family. This time, I'm not doing anything differently... except maybe not trying to start him training before the age of 2, which is making a difference as well.
So, what's the big deal? Why am I telling you this, all about the differences in toilet teaching a two year old without Lyme? Someone needs to know it. I wish I had known it.
If you're training one with Lyme this time, it's going to be different than if you've trained without. I was so blessed to have sisters and mothers who didn't push us, who knew something was different with our children, no matter how smart and wonderful they were, that it didn't matter if they just weren't trained yet. The only emotional beating I got was from myself, not outsiders looking down at me, asking why MY kids weren't trained when their 18month olds were. Even if I thought they might be.
I want you to know, if you are facing this trouble, if you have a child of any "difference," if it is Lyme, if it is ADHD, if it is any sickness from Babesia to wherever, that it's going to be ok. If it is possible, it will happen, eventually. If your child is so ill that it is not possible, and it doesn't happen, and they have diapers forever...well, we do what we have to do. But, it is no reflection on your parenting if your child is one of the thousands who look "average," seem "normal," and have outward appearances of every other child their age, and still has accidents or need nighttime care, or who is embarassed for their bladder still trying to catch up with the growth of their bodies. It just doesn't matter. There are far more important things to focus on in life.
I did have one distant great uncle who, seeing that my E at six was still having periodic accidents, recommended that we treat her like he treated his oldest son, who, when he had an accident, would be shamed for it, then squirted off in the yard, naked, with a garden hose. I was horrified and embarassed... not for my daughter, but for his then grown son. It amazed me that uncle could, in one breath, recommend childrearing practices to me, and in the next breath, say that his same son was doing much better in rehab (really), his plugged and tatted and heroined self luckily recouping. I wonder, in the end, if those two stories were related, after all?
My two older bairns are bright, happy, smart, healthy as possible (when possible) and diaper free (at eight and ten, thankfully), and no longer randomly pull their pants down in the back yard while screaming "I have to PEEEEEEEE!" (yes, startling the neighbors).
But, wow. It is so different to be training a (hopefully) Lyme-free child.
Kinda freaks me out, though. I told Sir that I'd consider thinking about maybe sometime us having one more child, but only once little e was both weaned and potty trained, because if I'm going to spend another year in a wheelchair puking like I did during the last pregnancy, I'm not going try to potty train a child at the same time.
Do you think e heard me? And wants a mini-sib? And do I have to actually consider it once he is trained? (ack?! Maybe?)
But it was also strangley demoralizing as a mother to have a three and a half year old who was not potty trained. We knew they were smart. We knew they were capable. We knew they were sick, too, although we didn't know why yet, when E was that age. Sir was working from hom then, so we had not one but two adults (one able bodied, one, meh.) working on this project. But, although both children, in their own times, trained beautifully for two weeks out of the month, then they would start in with accidents and continue into the fevers, with everything falling apart. Every month... two weeks of training, one week of nastysick, one week of recovery/starting over, lather/rinse/repeat. Nevermind my own sickness- who cares about training when you're too sick to be awake? Let's watch Dora in the recliner while Mama nurses the baby and sleeps, k?
And so... both of my older children trained shortly AFTER they each turned four, when they finally could manage to stay dry all day (mostly) and through the night. SO, when my second child, A, started training at 2, my first child, E, was still in diapers, at 3.7. They still had accidents until they were sevenish, but mostly finished training at four. Two long years, each, overlapping with both training during one of the years. Yowsa.
I felt like a failure as a mother... why could I not get these children potty trained? But at the same time, I felt restrained from doing anything drastic about it, no major missions or yelling at the little ones. It was jsut as frustrating for them as it was for me.... well, almost. I could see how hard they worked at this goal, how much they wanted to be able to do it... and how frustrated they were at being unable to continue when the sickness began. They wanted the joy of being trained almost as much as we did.
Pause four years, and then enters little mr. e- or, Captain America, as we call him. Third child. Post Lyme treatment for me. And, so far, he's symptom free, and just turned two.
Potty training this one? Piece. Of. Cake. He won't wear a diaper and wants to be naked, but he also rarely has accidents. He happily uses the little or big potties interchangeably and tells me when he needs to go. He refuses diapers because he really wants to learn. Is he just a merry little soul?
The lack of Lyme, to me, is a huge difference... there is continuity, no stopping and starting, no giving up as he lies limply in my arms burning with fever. You can't forcibly train a small one as they lie limply in your arms burning at 104 degrees...even if that is regeur for your family. This time, I'm not doing anything differently... except maybe not trying to start him training before the age of 2, which is making a difference as well.
So, what's the big deal? Why am I telling you this, all about the differences in toilet teaching a two year old without Lyme? Someone needs to know it. I wish I had known it.
If you're training one with Lyme this time, it's going to be different than if you've trained without. I was so blessed to have sisters and mothers who didn't push us, who knew something was different with our children, no matter how smart and wonderful they were, that it didn't matter if they just weren't trained yet. The only emotional beating I got was from myself, not outsiders looking down at me, asking why MY kids weren't trained when their 18month olds were. Even if I thought they might be.
I want you to know, if you are facing this trouble, if you have a child of any "difference," if it is Lyme, if it is ADHD, if it is any sickness from Babesia to wherever, that it's going to be ok. If it is possible, it will happen, eventually. If your child is so ill that it is not possible, and it doesn't happen, and they have diapers forever...well, we do what we have to do. But, it is no reflection on your parenting if your child is one of the thousands who look "average," seem "normal," and have outward appearances of every other child their age, and still has accidents or need nighttime care, or who is embarassed for their bladder still trying to catch up with the growth of their bodies. It just doesn't matter. There are far more important things to focus on in life.
I did have one distant great uncle who, seeing that my E at six was still having periodic accidents, recommended that we treat her like he treated his oldest son, who, when he had an accident, would be shamed for it, then squirted off in the yard, naked, with a garden hose. I was horrified and embarassed... not for my daughter, but for his then grown son. It amazed me that uncle could, in one breath, recommend childrearing practices to me, and in the next breath, say that his same son was doing much better in rehab (really), his plugged and tatted and heroined self luckily recouping. I wonder, in the end, if those two stories were related, after all?
My two older bairns are bright, happy, smart, healthy as possible (when possible) and diaper free (at eight and ten, thankfully), and no longer randomly pull their pants down in the back yard while screaming "I have to PEEEEEEEE!" (yes, startling the neighbors).
But, wow. It is so different to be training a (hopefully) Lyme-free child.
Kinda freaks me out, though. I told Sir that I'd consider thinking about maybe sometime us having one more child, but only once little e was both weaned and potty trained, because if I'm going to spend another year in a wheelchair puking like I did during the last pregnancy, I'm not going try to potty train a child at the same time.
Do you think e heard me? And wants a mini-sib? And do I have to actually consider it once he is trained? (ack?! Maybe?)
Friday, February 4, 2011
Body Issues
I have so many, from my well meaning (and really generally wonderful) Dad mentioning stretch lines on my legs one summer in high school (I was 137lbs and 5'8", btw, and though we didn't know it, was developing lymphedema) to kids in middle school calling me thunder thighs (evil children. Can't we just skip middle school, it's when so much of the damage to our psyches happens and it takes up until our thirties and beyond to recover from the idiot comments made during that fragile time.)
If you don't know much about lymphedema, your body doesn't properly move around the lymphatic fluid in your system, and you retain a LOT of water. Like, a LOT lot. When we first started the treatments (which include binding the legs up in bandages firmly to make them work better) we got over three liters of fluid out of my CALVES. SO you can imagine the rest of me... I still am the same height as high school, but now weigh close to three- 3!!!-- hundred pounds. I hate it, and there is no magic pill to use, no exercise I can do to diminish it, no diet that will work. I just get to be bound with bandages like a mummy. Thankfully, I've graduated to expensive spandex bodysuits under my clothes now. We call them my supersuits. They make it so I can walk.
But the point is this:
It still makes me uncomfortable that my husband thinks I am gorgeous. Drop down, flat out gorgeous. This is NOT a problem, right? To be sexy to my husband of fourteen years, who is bluntly honest in everything else he says, and basically is hardwired to find it impossible to lie (think extremely mild aspberger's) and yet every time he caresses me and tells me how incredibly hot I am, I have a little voice in the back of my head that says I am hideous and disgusting and how in the world could he think that I am beautiful? I see myself in the mirror, and remember how I thought myself fat when I weighted less than 150lbs, and realize that I will not in this life ever see that side of 200 again... and I just have SO much trouble believing him that I could possibly be desireable. But it must be true to him. He really does love and find me extremely sexy, and I doubt it's because he has some perversion. He loved me little when we married, he's loved me while sick and sicker, and he still loves me, though he doesn't like a lot of things about how I can move, my pain level, etc. yet he thinks I am beautiful.
And yet I cannot psychologically believe him.
And that's my problem, not his.
If you don't know much about lymphedema, your body doesn't properly move around the lymphatic fluid in your system, and you retain a LOT of water. Like, a LOT lot. When we first started the treatments (which include binding the legs up in bandages firmly to make them work better) we got over three liters of fluid out of my CALVES. SO you can imagine the rest of me... I still am the same height as high school, but now weigh close to three- 3!!!-- hundred pounds. I hate it, and there is no magic pill to use, no exercise I can do to diminish it, no diet that will work. I just get to be bound with bandages like a mummy. Thankfully, I've graduated to expensive spandex bodysuits under my clothes now. We call them my supersuits. They make it so I can walk.
But the point is this:
It still makes me uncomfortable that my husband thinks I am gorgeous. Drop down, flat out gorgeous. This is NOT a problem, right? To be sexy to my husband of fourteen years, who is bluntly honest in everything else he says, and basically is hardwired to find it impossible to lie (think extremely mild aspberger's) and yet every time he caresses me and tells me how incredibly hot I am, I have a little voice in the back of my head that says I am hideous and disgusting and how in the world could he think that I am beautiful? I see myself in the mirror, and remember how I thought myself fat when I weighted less than 150lbs, and realize that I will not in this life ever see that side of 200 again... and I just have SO much trouble believing him that I could possibly be desireable. But it must be true to him. He really does love and find me extremely sexy, and I doubt it's because he has some perversion. He loved me little when we married, he's loved me while sick and sicker, and he still loves me, though he doesn't like a lot of things about how I can move, my pain level, etc. yet he thinks I am beautiful.
And yet I cannot psychologically believe him.
And that's my problem, not his.
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