I've had kidney involvement with lupus since 1992. Or as the docs say, Lupus Nephritis. What it means is the lupus (immune system gone awry) is attacking the kidneys. Not so long ago, say 40-50 years ago, this was a death sentence.
But nowadays, this attack can be halted, and even reversed, with drugs. I've had my kidney function go down to somewhere around 25-30%, told it would never improve, and to be expecting a transplant/ dialysis within 5 years (that was 6 years ago).
In fact, my function has gone this low 3 times (with each lupus flare), and has always returned to normal after getting the lupus under control. The first time we used just prednisone. I also got chelation therapy from an alternative practitioner and went natural with my diet, avoiding gluten and making my own juices. I was on prednisone for about a year, starting at a high dose.
The second time I got sick (lupus flare as they say), I had prednisone, 4 blood pressure meds, chemotherapy (cytoxan) and some other drugs that were for other problems (no fun drugs like marijuana though- gotta move to California!), as well as chelation therapy, diet change (candida diet), herbs, and lots of acupuncture. Again on prednisone for about a year, the other drugs for 1-2 years.
the 3rd time, i refused the cytoxan because it made me so sick, and it has been controlled this time with prednisone (for about a year), cellcept (on this indefinitely- about 18 months so far. it can be very expensive, by the way, depending on your insurance), another blood pressure med, a few other unrelated drugs and acupuncture and diet change (low sugar, low salt, eliminate nutrasweet, avoid gluten). I always go back to my crappy diet. Will i ever learn?
I've had this disease since 1992, and I haven't had to go on diaysis or get a transplant yet.
I do know someone who had lupus, got a kidney transplant, is on some drugs to keep her from rejecting the organ, and hasn't had a recurrence of the lupus for over a decade! so, a transplant is not the worst thing that can happen to you. it was a new lease on life for her. meanwhile, I'm doing OK. I don't have the verve I did when i was completely healthy, but i've found a balance between doing stuff and resting, and hopefully will avoid a 4th "episode" as long as possible- maybe forever? It's possible (must not eat crap. must not eat crap.)
A note on the transplants, and this is really messed up. If you use medical marijuana, you may be refused for an organ transplant, even though the marijuana was prescribed by an M.D. The federal law trumps the state laws in this area. So, if you're in pain and also a candidate for an organ transplant, you're better off using Percocet (even though is causes constipation and is cut with Tylenol, which is toxic to your liver). SO, pop all the pills you want just don't smoke and plants.
So, anyway, if you've got lupus, and lupus nephritis, you'll be OK if you can get your hands on some prednisone (which believe me, they're happy to hand out. My cat and I were on prednisone at the same time once. His was cherry flavored. mine tasted like rat poison. or what i imagine rat poison would taste like). Prednisone sucks, but it works, and it's cheap, and you'll live to tell the tale.
Wednesday, June 18, 2008
Tuesday, June 10, 2008
Fibro What? The other F word
During and between the 3 lupus flares I’ve had, one constant has been my companion- fibromyalgia. After the big scares have all passed- my kidneys are no longer failing, I’ve recovered from the stroke, the neuropathy has subsided, I can eat, the fever is gone, etc.- the pain is still there. But I find that the fibro pain doesn’t seem to register with my doctors, because it’s not measurable on a blood test or an X-ray. So over these 16 years of dealing with both lupus and fibro, I’ve been pretty much on my own in dealing with the fibro. I’m sure I’m not alone in my feeling alone.
I have tried so many things to remedy the fatigue, the tightness and pain in my upper back magnify when I lie down and keep me awake at night, the tenderness in my arms, and general irritability.
I tried chiropractic, acupunture, diet change, chi gong, stretching, ignoring and denying, popping lots of advil, massage, capsacum patches, icy hot, heating pad, gentle exercise, not-so-gentle exercise, miscellaneous detoxification methods, stress reduction, meditation, journalling, and staying educated. For me, I’d say the least effective of these techniques has been ignoring and denying, though for some reason I hung onto that one the longest. The most effective? Acupuncture, chi gong, detox (taking greens, using foot detox pads, milk thistle, filtered water, eating lots of fruits and veggies), stress management (such as writing a list of things I’m grateful for on a regular basis, setting realistic goals, and disengaging from people who aggravate me; I also take rescue remedy, a flower essence)), getting enough rest, diet change (getting rid of junk food and diet soda), and having fun. Laughing and smiling releases endorphins, which are our body’s natural pain killers.
Which brings me to one of my favorite therapies- songwriting. In 2002, during the worst of my health problems, I started writing ridiculous songs about my situation. It all started when I was doing the 24-hour urine collection test, where you have to pee in a jug for 24 hours then bring your big jug of pee in to the doctor the next morning. At the time, I was trying to work my way up to being able to play the guitar again (I had had a stroke), and was playing the ukelele. The first song in the uke book was the old folk song “little brown jug.” Back and forth between the frequent bathroom trips (I was on diuretics) and the ukelele, well of course my first parody was called “Little brown jug, about peeing in a jug.”
After this little breakthrough, I spent hours writing every day and brought my song idea notebook to every doctor appointment. Whenever I was left sitting in the waiting room for 2 hours or longer, I’d just sit there and work on my songs. Now instead of it being an indignity, it was an opportunity. And now, not only was I able to laugh about my situation, using humor helped me gain perspective and take back some control. If someone was especially rude to me, but I was in no position to fight back because they were the only doctor in town who took my medical insurance, then I’d wait ‘til I got home and write a song about them (and not usually a very nice one- but in my songwriting and journaling life, I can say anything I want).
[hear the songs: http://www.thesingingpatient.com]
While we can’t control our situation, or the actions of others, or even our bodily functions at times, the one thing we have control over is our response to any given situation. And in the end, that’s the most empowering thing of all. It is our choice whether this “thing” we’ve been given is a horrible burden, or even a gift that helps us to slow down and appreciate things around us that we never noticed when we were moving faster.
I have tried so many things to remedy the fatigue, the tightness and pain in my upper back magnify when I lie down and keep me awake at night, the tenderness in my arms, and general irritability.
I tried chiropractic, acupunture, diet change, chi gong, stretching, ignoring and denying, popping lots of advil, massage, capsacum patches, icy hot, heating pad, gentle exercise, not-so-gentle exercise, miscellaneous detoxification methods, stress reduction, meditation, journalling, and staying educated. For me, I’d say the least effective of these techniques has been ignoring and denying, though for some reason I hung onto that one the longest. The most effective? Acupuncture, chi gong, detox (taking greens, using foot detox pads, milk thistle, filtered water, eating lots of fruits and veggies), stress management (such as writing a list of things I’m grateful for on a regular basis, setting realistic goals, and disengaging from people who aggravate me; I also take rescue remedy, a flower essence)), getting enough rest, diet change (getting rid of junk food and diet soda), and having fun. Laughing and smiling releases endorphins, which are our body’s natural pain killers.
Which brings me to one of my favorite therapies- songwriting. In 2002, during the worst of my health problems, I started writing ridiculous songs about my situation. It all started when I was doing the 24-hour urine collection test, where you have to pee in a jug for 24 hours then bring your big jug of pee in to the doctor the next morning. At the time, I was trying to work my way up to being able to play the guitar again (I had had a stroke), and was playing the ukelele. The first song in the uke book was the old folk song “little brown jug.” Back and forth between the frequent bathroom trips (I was on diuretics) and the ukelele, well of course my first parody was called “Little brown jug, about peeing in a jug.”
After this little breakthrough, I spent hours writing every day and brought my song idea notebook to every doctor appointment. Whenever I was left sitting in the waiting room for 2 hours or longer, I’d just sit there and work on my songs. Now instead of it being an indignity, it was an opportunity. And now, not only was I able to laugh about my situation, using humor helped me gain perspective and take back some control. If someone was especially rude to me, but I was in no position to fight back because they were the only doctor in town who took my medical insurance, then I’d wait ‘til I got home and write a song about them (and not usually a very nice one- but in my songwriting and journaling life, I can say anything I want).
[hear the songs: http://www.thesingingpatient.com]
While we can’t control our situation, or the actions of others, or even our bodily functions at times, the one thing we have control over is our response to any given situation. And in the end, that’s the most empowering thing of all. It is our choice whether this “thing” we’ve been given is a horrible burden, or even a gift that helps us to slow down and appreciate things around us that we never noticed when we were moving faster.
Fear Factor: Vitamin D
How interesting, and yet not surprising that we have a vitamin D deficiency in a culture where people spend their entire day indoors or in a car, train, mall, classroom, or bus. Vitamin D comes from: vitamins, vitamin-fortified milk (milk as a "health food" is another topic entirely) or other vitamin-fortified foods and, the only natural source of vitamin D: it is made by the body when the sunlight hits the skin.
A study found that 40% of children are vitamin-D deficient, which can cause thinning bones, rickets, seizures, a weakened immune system. http://www.reuters.com/article/latestCrisis/idUSN02317202 . They also found that drinking a lot of soda and being overweight were also factors that caused demineralization, or leaching of vitamin D and other important nutrients.
I think we as a culture are paranoid about the sun to the point of hurting ourselves by not getting enough of it (with the exception of those who lie in the sun for hours to the point of skin damage). According to this guy http://www.jonbarron.org/blog_published/2008/06/vitamin_d_deficiency_a_silent.html , the incidence of vitamin D deficiency increases in the winter, when there is less sun exposure. And people with darker skin need 3-6 times more the amount of sun exposure than those with lighter skin.
It's a great irony that lupus might be triggered by vitamin D deficiency, because lupus patients are specifically told to *always* avoid the sun. Some of them carry parasols or adjust their schedule so they only run errands after sunset. Those folks definitely need to get some vitamin D.
I am told that calcium doesn't absorb without vitamin D. It seems that folks with lupus really need to take a combination Calcium-vitamin D supplement (doctors usually recommend OsCal, which you can get over the counter), not just to make up for the lack of sun exposure, but also to protect against the bone-thinning caused by drug treatments such a steroids like Prednisone.
A study found that 40% of children are vitamin-D deficient, which can cause thinning bones, rickets, seizures, a weakened immune system. http://www.reuters.com/article/latestCrisis/idUSN02317202 . They also found that drinking a lot of soda and being overweight were also factors that caused demineralization, or leaching of vitamin D and other important nutrients.
I think we as a culture are paranoid about the sun to the point of hurting ourselves by not getting enough of it (with the exception of those who lie in the sun for hours to the point of skin damage). According to this guy http://www.jonbarron.org/blog_published/2008/06/vitamin_d_deficiency_a_silent.html , the incidence of vitamin D deficiency increases in the winter, when there is less sun exposure. And people with darker skin need 3-6 times more the amount of sun exposure than those with lighter skin.
It's a great irony that lupus might be triggered by vitamin D deficiency, because lupus patients are specifically told to *always* avoid the sun. Some of them carry parasols or adjust their schedule so they only run errands after sunset. Those folks definitely need to get some vitamin D.
I am told that calcium doesn't absorb without vitamin D. It seems that folks with lupus really need to take a combination Calcium-vitamin D supplement (doctors usually recommend OsCal, which you can get over the counter), not just to make up for the lack of sun exposure, but also to protect against the bone-thinning caused by drug treatments such a steroids like Prednisone.
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