very cool idea for a book: Women, Work and Autoimmune Disease: Keep Working, Girlfriend!"
I watch Suze Orman a lot, and she mentions something I had a hard time putting my finger on, which is if you decide to stop working for whatever reason, illness or not, and depend entirely on your spouse, a couple things happen. One, you lose some or all of your power in the relationship. Two, you limit your options- it's harder to get back in the workforce than it is to remain in it. Three, you find you have less to talk about with your partner, and maybe needier.
Now, granted, I had an extremely wonderful non-working year after having a stroke, after I got my pain under control, of course. I spent the year writing songs, hanging out with friends and being creative. I felt very alive.
So I don't think you need a job to be interesting or to have a full life.
But eventually, I had to work- I was not married and even with medicaid, I still had expenses.
And now that I am married, my hubby offers to pay for everything(!) which is awesome, but I still feel the need to work. Fortunately, I can do what I do part-time, so it's not all-or-nothing. If I had to go work full-time in a high-stress job, I'd be in the hospital in 2 months.
So, it's an individual decision, and one that can change over time.
I don't have a definitive opinion on working or not, as I do on biopsies, because people's severity of lupus is so different from person to person, and even from year to year with the same person. But I do think most of us, left to our own devices, with no structure, nowhere to be, will just sit in our PJs and fritter the day away, and not feel too good about it after a while. It sounds great in theory, but once you've done it, you realize most of us don't have the discipline to structure our own day, every day, with no outside motivating force, like someone expecting you to be somewhere. The only reason I was so motivated during my year off, was that I was fighting for my life, fighting to get back everything I lost during the stroke, and fighting to beat my prognosis of needing dialysis and kidney transplants within 5 years. i was highly motivated to beat the odds, because I've seen the results of those who have to go through dialysis every other day, and the results of folks who never recover from strokes. So I had those motivating factors, and I looked so horrible, so pale, anemic, weak, hair falling out, puffy prednisone face, that I desperately needed something to bury myself in, so I lost myself in the creativity of writing songs.
Now that I look mostly like myself and am not so frantically fighting the near-impossible, no, I'm not nearly as motivated and I don't always use my free days well. So I work part-time, and I feel very good about that. I think keeping one foot in the workplace is a great compromise for me, because if -God forbid- anything happened to my husband I wouldn't be totally lost financially. And right now, we don't really need whatever money I earn, so it can serve as emergency money (if God forbid I end up in the hospital again) or savings. So that's where I'm at now. I tried for the longest time to work full-time and I realized it's just too much for me. I've gone into near-kidney failure (30% function) 3 times now. Now I just do a few shows a month (then sleep all day the next day) and teach guitar one afternoon a week. I feel like I have a life, but I'm not pushing myself into relapse. A tricky balance, but after 16 years with this diagnosis, I'm starting to learn the deep meaning of the serenity prayer: God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference. All three sentences, so important.
Maybe next time I'll go further into how other tools from the 12-step program are useful in dealing with chronic illness. Because really, alcoholism is also a chronic illness, too. We can certainly learn from them.
Monday, October 20, 2008
Friday, October 17, 2008
War on War- give peace a chance!
I've gotten the stomach flu twice since getting lupus and lost 3 weeks to it. i was in the bathroom for a week both times, and shaky and wornout for the next 2. and let's just say i'll never eat chocolate chip ice cream again.
I don't know if our immune system is really stronger, as is suggested by some doctors (those with immune systems having "hyperactive" immune systems) or if it's just confused, and going after the wrong things.
Columnist Dr. Paul G Donahue, MD, says "Lupus isn't a blood disease. It is more like an illness, such as rheumatoid arthritis. It's one of those many illnesses where the immune system turns against its own body. It produces a slew of antibodies — immune system grenades — and tosses them at many organs."
Most people in alternative medicine would say our bodies are overloaded with toxic stuff - chemicals pesitcides, colorings, etc. That are now part of modern life (autoimmune disease rates have tripled in the last 4 decades, so i don't think it's genetic!)
So, grenades. Good metaphor. Maybe it's like the war on terror. While we're distracted fighting in Iraq (lupus/ attacking our own healthy tissue because it's been infiltrated by foreigners), other terrorist cells (cells! ha!) are sneaking around in other parts of our bodies wreaking havoc. Sadly i don't think you can win a war on terror. Best we can hope for is a tenuous peace, which is the same we hope for with lupus. i'd love to eradicate it, but i think the best we can hope for is a long deep or even permanent remission.
so why do i think we get sicker longer with things like the flu? well for one thing, out defenses are down if we're on immune suppressants such as prednisone, plaquenil, cellcept, etc.- IOW most of the drugs that are thrown at lupus. If not the drugs, then the war on terror theory. Like an army stretched too thin, our T cells can only be in so many places at once, then it runs out of resources. Maybe a combination of both.
Those in alternative medicine suggest, and my experience has borne this out, that reducing irritants helps lessen symptoms as well as reduce the needed amount of meds to control lupus and other autoimmune diseases. It is commonly suggested to go on either a gluten-free, yeast-free, or low-fat vegan diet. My 18 months on the Candida diet, I felt great and I was my ideal weight. I fell off the wagon, and while I try to at least limit my gluten intake, it really needs to be a completely gluten-free diet to make any difference.
Jenny McCarthy has just released a book about her experience healing her son from Autism. His autism set in the moment he received a large dose of multiple vaccines, and over the course of several years on a gluten-free, dairy-free diet (watch for hidden dairy and gluten in many products), and much unconditional love, he came out of it and is now a loving, outgoing child. The Center for Disease Control dismisses her amazing story as "anecdotal." Anecdotes are where breakthrough science begins, if it is sincerely interested in healing (and not controlled by those who want to sell us drugs and vaccines). Jenny refers to her son's autism as both "autism" and a "vaccine injury," and while she hesitates to say he is healed, because she feels that his autism could be re-triggered by environmental and dietary toxins, she does say he is recovered. A tenuous peace.
I believe we can find a tenuous peace with lupus and be on few or no drugs. But we have to be willing to make some tough choices and be disciplined about our diets, and to experiment a bit 'til we find what works for us. It's hard work (who wants to give up pizza?), and some folks are going to think you're crazy. But in my experience, being sick is hard work, even more people think you're crazy (hypochondriac anyone? lazy? all in your head?). And it sucks a lot more.
I don't know if our immune system is really stronger, as is suggested by some doctors (those with immune systems having "hyperactive" immune systems) or if it's just confused, and going after the wrong things.
Columnist Dr. Paul G Donahue, MD, says "Lupus isn't a blood disease. It is more like an illness, such as rheumatoid arthritis. It's one of those many illnesses where the immune system turns against its own body. It produces a slew of antibodies — immune system grenades — and tosses them at many organs."
Most people in alternative medicine would say our bodies are overloaded with toxic stuff - chemicals pesitcides, colorings, etc. That are now part of modern life (autoimmune disease rates have tripled in the last 4 decades, so i don't think it's genetic!)
So, grenades. Good metaphor. Maybe it's like the war on terror. While we're distracted fighting in Iraq (lupus/ attacking our own healthy tissue because it's been infiltrated by foreigners), other terrorist cells (cells! ha!) are sneaking around in other parts of our bodies wreaking havoc. Sadly i don't think you can win a war on terror. Best we can hope for is a tenuous peace, which is the same we hope for with lupus. i'd love to eradicate it, but i think the best we can hope for is a long deep or even permanent remission.
so why do i think we get sicker longer with things like the flu? well for one thing, out defenses are down if we're on immune suppressants such as prednisone, plaquenil, cellcept, etc.- IOW most of the drugs that are thrown at lupus. If not the drugs, then the war on terror theory. Like an army stretched too thin, our T cells can only be in so many places at once, then it runs out of resources. Maybe a combination of both.
Those in alternative medicine suggest, and my experience has borne this out, that reducing irritants helps lessen symptoms as well as reduce the needed amount of meds to control lupus and other autoimmune diseases. It is commonly suggested to go on either a gluten-free, yeast-free, or low-fat vegan diet. My 18 months on the Candida diet, I felt great and I was my ideal weight. I fell off the wagon, and while I try to at least limit my gluten intake, it really needs to be a completely gluten-free diet to make any difference.
Jenny McCarthy has just released a book about her experience healing her son from Autism. His autism set in the moment he received a large dose of multiple vaccines, and over the course of several years on a gluten-free, dairy-free diet (watch for hidden dairy and gluten in many products), and much unconditional love, he came out of it and is now a loving, outgoing child. The Center for Disease Control dismisses her amazing story as "anecdotal." Anecdotes are where breakthrough science begins, if it is sincerely interested in healing (and not controlled by those who want to sell us drugs and vaccines). Jenny refers to her son's autism as both "autism" and a "vaccine injury," and while she hesitates to say he is healed, because she feels that his autism could be re-triggered by environmental and dietary toxins, she does say he is recovered. A tenuous peace.
I believe we can find a tenuous peace with lupus and be on few or no drugs. But we have to be willing to make some tough choices and be disciplined about our diets, and to experiment a bit 'til we find what works for us. It's hard work (who wants to give up pizza?), and some folks are going to think you're crazy. But in my experience, being sick is hard work, even more people think you're crazy (hypochondriac anyone? lazy? all in your head?). And it sucks a lot more.
Monday, September 1, 2008
Hands offa my kidneys!
The evil kidney biopsy is on my list of 15 least medical procedures, along with catheter and root canal. the thing about kidney biopsy is that while your doc may tell you it is necessary, many other docs will tell you it is not. and according to whatever book it was i was reading the first time i was *told* I *needed* a biopsy, these biopsies are a matter of debate among docs as to whether they are necessary and whether they even provide any useful information.
As far as I can tell, there's no real upside to getting a biopsy.
However, there are definite downsides. There are major arteries in the kidneys. if they happen to hit one while rooting around trying to snip a few pieces of tissue off your kidney, you can have a dangerous amount of internal bleeding. if you are a bleeder, like me, you may spend all day in the hospital receiving anti-coagulants until it's safe enough for them to do the test (my 2nd biopsy). or they may choose to instead play it safe and do an open biopsy (cut you open) so they can see what they're doing better. if this is the case, you will be put under general (complete) anesthesia, intubated, both of which are not without risk, in a hospital, which is teeming with germs. then you may (as i did) get infected and have green puss oozing out your side. in my case I'm allergic to so many antibiotics i decided to kill it off myself by taking 60 garlic pills a day. in the summer. with no air conditioning. (on the other hand, i was completely safe from vampire attacks). (my first biopsy).
both times i was told it might be a class 4, whatever that means, and both time i was told there was "not enough tissue."
i really suspect this test at best is a useless exercise, and at worst an invasive and unnecessary way to make money off the backs of and at significant risk to patients.
There will not be a 3rd biopsy on my kidneys.
they can get the info i need from urinalysis and blood draws.
As far as I can tell, there's no real upside to getting a biopsy.
However, there are definite downsides. There are major arteries in the kidneys. if they happen to hit one while rooting around trying to snip a few pieces of tissue off your kidney, you can have a dangerous amount of internal bleeding. if you are a bleeder, like me, you may spend all day in the hospital receiving anti-coagulants until it's safe enough for them to do the test (my 2nd biopsy). or they may choose to instead play it safe and do an open biopsy (cut you open) so they can see what they're doing better. if this is the case, you will be put under general (complete) anesthesia, intubated, both of which are not without risk, in a hospital, which is teeming with germs. then you may (as i did) get infected and have green puss oozing out your side. in my case I'm allergic to so many antibiotics i decided to kill it off myself by taking 60 garlic pills a day. in the summer. with no air conditioning. (on the other hand, i was completely safe from vampire attacks). (my first biopsy).
both times i was told it might be a class 4, whatever that means, and both time i was told there was "not enough tissue."
i really suspect this test at best is a useless exercise, and at worst an invasive and unnecessary way to make money off the backs of and at significant risk to patients.
There will not be a 3rd biopsy on my kidneys.
they can get the info i need from urinalysis and blood draws.
Friday, August 29, 2008
Post-partial depression
Last week I wrote about my visit to the dentist and how much the Novocain shot hurt. I actually had to get two shots, because I could still feel the drill after the first one. But the drill didn't really hurt, so I asked the dentist not to give me a second shot, but she did anyway. The second that Novocain entered my system I instantly felt like crying.
Several days later, I gathered enough of my senses to look it up online. Once i finally figured out how to spell Novocain, it all fell into place. (FYI, the generic version has an "e" at the end, and if you search online using this spelling you will find a song by Green Day and a weird movie of the same name).
According to Drugs.com, the FDA advises using as low dosage as possible to avoid adverse side effects. And warns against using Novocain on patients with known drug allergies, of which I have several. (Several drugs give me a full-body rash, one makes my tongue swell up, one makes me hurl, and latex makes my skin fell like it's burning.) So, with several drug allergies listed on my chart, why did I get not one, but *two* shots? I ended up with a 6-day attack of fibromyalgia, of which I had been free for several months, severe anxiety, and major mood swings. All of which ended after 2 back-to-back and lengthy acupuncture treatments, but if I did not have a fantastic and available acupuncturist, i would still be suffering instead of sitting here typing about this in past tense.
The main lessons I want to share from this experience are these:
First of all, if you have drug sensitivities, you may not want to use Novocain. l have learned, via my pointing and clicking, that there is a far more hypoallergenic drug available that will give the same numbing, called Lidocaine. In the future, I will list Novocain (and Novocaine) as a drug allergy, so that I do not have to go through this again. It would probably be wise to do a detox of some sort an such an injection as well, since these things have to be metabolized by the liver. (I already take milk thistle every night because I take prescriptions every day).
Second of all, before embarking on major dental procedures, make sure your body is ready to handle the trauma. Yes, trauma. It is important to deal with cavities and broken teeth, as they can lead to larger problems, but make sure you are ready, or at least that you have some form of support (such as acupuncture, or another form of complementary medicine) to help you get back to yourself afterwards. We don't need to volunteer for a setback in our efforts to regain our health.
Third, always remember you are in charge. When the dentist starting grinding on my good tooth to make it match up with the new porcelain inlay on the tooth below it, I told her to stop it. When I go for my next cleaning, I am *not* going to do the fluoride treatment, which they handed me to swish around my mouth without asking me if I wanted it, and for which my insurance did not pay. I do not care about the money as much as the fact that Fluoride is a chemical. It is toxic. Its benefits are questionable, and its toxic qualities are a frequent topic of discussion in Europe, where they do *not* allow Fluoride in the water supply. The US drinking water supply is routinely fluoridated, as are most toothpastes. There are only a few toothpastes out there that do not contain fluoride, such as Tom's of Maine (I love the cinnamint flavor). I don't need any more toxic crap in my body than is already dumped there on a daily basis through air pollution, pesticides, flame retardants in fabrics, and Lord knows what else- I'm not going to volunteer to have more chemicals in my body! Read about fluoride, both sides of the discussion, from more than one source, and make your own decision.
Several days later, I gathered enough of my senses to look it up online. Once i finally figured out how to spell Novocain, it all fell into place. (FYI, the generic version has an "e" at the end, and if you search online using this spelling you will find a song by Green Day and a weird movie of the same name).
According to Drugs.com, the FDA advises using as low dosage as possible to avoid adverse side effects. And warns against using Novocain on patients with known drug allergies, of which I have several. (Several drugs give me a full-body rash, one makes my tongue swell up, one makes me hurl, and latex makes my skin fell like it's burning.) So, with several drug allergies listed on my chart, why did I get not one, but *two* shots? I ended up with a 6-day attack of fibromyalgia, of which I had been free for several months, severe anxiety, and major mood swings. All of which ended after 2 back-to-back and lengthy acupuncture treatments, but if I did not have a fantastic and available acupuncturist, i would still be suffering instead of sitting here typing about this in past tense.
The main lessons I want to share from this experience are these:
First of all, if you have drug sensitivities, you may not want to use Novocain. l have learned, via my pointing and clicking, that there is a far more hypoallergenic drug available that will give the same numbing, called Lidocaine. In the future, I will list Novocain (and Novocaine) as a drug allergy, so that I do not have to go through this again. It would probably be wise to do a detox of some sort an such an injection as well, since these things have to be metabolized by the liver. (I already take milk thistle every night because I take prescriptions every day).
Second of all, before embarking on major dental procedures, make sure your body is ready to handle the trauma. Yes, trauma. It is important to deal with cavities and broken teeth, as they can lead to larger problems, but make sure you are ready, or at least that you have some form of support (such as acupuncture, or another form of complementary medicine) to help you get back to yourself afterwards. We don't need to volunteer for a setback in our efforts to regain our health.
Third, always remember you are in charge. When the dentist starting grinding on my good tooth to make it match up with the new porcelain inlay on the tooth below it, I told her to stop it. When I go for my next cleaning, I am *not* going to do the fluoride treatment, which they handed me to swish around my mouth without asking me if I wanted it, and for which my insurance did not pay. I do not care about the money as much as the fact that Fluoride is a chemical. It is toxic. Its benefits are questionable, and its toxic qualities are a frequent topic of discussion in Europe, where they do *not* allow Fluoride in the water supply. The US drinking water supply is routinely fluoridated, as are most toothpastes. There are only a few toothpastes out there that do not contain fluoride, such as Tom's of Maine (I love the cinnamint flavor). I don't need any more toxic crap in my body than is already dumped there on a daily basis through air pollution, pesticides, flame retardants in fabrics, and Lord knows what else- I'm not going to volunteer to have more chemicals in my body! Read about fluoride, both sides of the discussion, from more than one source, and make your own decision.
Friday, August 22, 2008
Jaw-dropping day at the dentist
oh if only my dentist was as wacky as Steve Martin.
so far, i have survived visit 2 of 3 scheduled visits in the remodeling of my mouth (structural, not cosmetic- getting my first cleaning in 14 years, 2 molars restored with porcelain and a nightguard made. you night-grinders know what this is: we get to look like Rocky every night. Such a turnon! the only thing sexier than seeing your mate wearing a big rubber mouthguard is watching them take it out and seeing spit flying everywhere. Oh yeah!)
i have dental insurance (thank you, hubby's job) so about 2/3 of the cost is covered so far, but i fear i may be about to hit a cap. or is it a crown. HAHAHAHA. just a little tongue-in-cheek humor. HAHAHAHAHA
no they didn't give me laughing gas. and dang i coulda used some. my fear and loathing of the dentist outstrips my fears of both new york city and Best Buy. stay tuned to lupusandhumor and learn all Carla's neuroses, one by one.
the worst part for me is the novacaine shot. crap it hurts! i had to get 2 shots today- 1st one wasn't enough. i hate shots, i hate needles, i get more of each every year than McCain has houses. i never get used to it. you're being injured when someone stabs you in the vein and takes out, oh 20 vials of blood. but that's another story, one covered quite thoroughly on my "Sick Humor" CD and in my previous blogs.
Anyway today's visit was 3 hours and $750. oh but they validated my parking, so that was free.
Next time, and I'm not kidding, I'm bringing a blanket (too cold in there), sunglasses (flourescent light glaring in my eyes), a teddy bear, and Joe to drive me because- no kidding- I'm going to dope up on either attivan or a muscle relaxer. or both. they'll have to hold my jaw open. i'll be so zonked i'll have to wear wear a bucket to catch my drool. I'm exaggerating- but this is what I must promise myself, if I am to get motivated to go back for more torture in 2 weeks. I think i've found something I hate more than a pap smear.
When I told the dentist that i had these drugs in my cabinet (ok, bowl of bottles on my counter, not very feng shui, but i never forget my important meds), she looked jealous and said "wow." i told her if she wanted lupus, she could probably get some heavy drugs too (but I don't recommend it). It drives me crazy when people get jealous of folks with lupus ("oh i wish I could lay in the bed and read!"- after I had a stroke! I wished I could lay in the bed and read, too, but i see spots and zig zags all day long!) Point is, if your life is so messed up that you're jealous of someone with a debilitating chronic illness, first of all, keep it to yourself, and second of all, it's time for you to change your situation. Oy!
Anyway to find out why I'm putting myself through all this, tune in later for That's Inflammatory! Part 5
(I have no idea how many parts there will be to this series! I'll keep writing til my sed rate is zero).
so far, i have survived visit 2 of 3 scheduled visits in the remodeling of my mouth (structural, not cosmetic- getting my first cleaning in 14 years, 2 molars restored with porcelain and a nightguard made. you night-grinders know what this is: we get to look like Rocky every night. Such a turnon! the only thing sexier than seeing your mate wearing a big rubber mouthguard is watching them take it out and seeing spit flying everywhere. Oh yeah!)
i have dental insurance (thank you, hubby's job) so about 2/3 of the cost is covered so far, but i fear i may be about to hit a cap. or is it a crown. HAHAHAHA. just a little tongue-in-cheek humor. HAHAHAHAHA
no they didn't give me laughing gas. and dang i coulda used some. my fear and loathing of the dentist outstrips my fears of both new york city and Best Buy. stay tuned to lupusandhumor and learn all Carla's neuroses, one by one.
the worst part for me is the novacaine shot. crap it hurts! i had to get 2 shots today- 1st one wasn't enough. i hate shots, i hate needles, i get more of each every year than McCain has houses. i never get used to it. you're being injured when someone stabs you in the vein and takes out, oh 20 vials of blood. but that's another story, one covered quite thoroughly on my "Sick Humor" CD and in my previous blogs.
Anyway today's visit was 3 hours and $750. oh but they validated my parking, so that was free.
Next time, and I'm not kidding, I'm bringing a blanket (too cold in there), sunglasses (flourescent light glaring in my eyes), a teddy bear, and Joe to drive me because- no kidding- I'm going to dope up on either attivan or a muscle relaxer. or both. they'll have to hold my jaw open. i'll be so zonked i'll have to wear wear a bucket to catch my drool. I'm exaggerating- but this is what I must promise myself, if I am to get motivated to go back for more torture in 2 weeks. I think i've found something I hate more than a pap smear.
When I told the dentist that i had these drugs in my cabinet (ok, bowl of bottles on my counter, not very feng shui, but i never forget my important meds), she looked jealous and said "wow." i told her if she wanted lupus, she could probably get some heavy drugs too (but I don't recommend it). It drives me crazy when people get jealous of folks with lupus ("oh i wish I could lay in the bed and read!"- after I had a stroke! I wished I could lay in the bed and read, too, but i see spots and zig zags all day long!) Point is, if your life is so messed up that you're jealous of someone with a debilitating chronic illness, first of all, keep it to yourself, and second of all, it's time for you to change your situation. Oy!
Anyway to find out why I'm putting myself through all this, tune in later for That's Inflammatory! Part 5
(I have no idea how many parts there will be to this series! I'll keep writing til my sed rate is zero).
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