I just got back from the rheumatologist and my tests for lupus all came back NEGATIVE! Negative ANA and Negative for double-stranded DNA. I'm not sure they've ever been negative in the 16 years since diagnosis.
If my doctor was a jerk, he might have said I’d been misdiagnosed and never had lupus in the first place. It’s hard to say that in the face of my having had pretty much every lupus symptom a person can have- and yet there are many doctors who do this.
The idea that someone can test negative after years of testing positive- or that someone can get completely better from a disease that in their minds has no cure- it just rocks their world. So, many doctors just decide to negate your entire experience – both the pain and suffering and the hard work you did to get better- by saying you never had lupus in the first place.
Thankfully my doctor is not one of those folks and his pen was actually moving while I babbled about Chi Gung and the gluten-free dairy-free diet. And this is how we start a health revolution: taking care of ourselves, and letting doctors know when we find a non-drug therapy that works. Doctors get information from drug reps and patients. We may not feel like it sometimes, but we are just as important as those drug reps.
If enough people start mentioning Chi Gung or gluten free diets, or any other effective alternative treatments, doctors will start taking it seriously and suggesting it to their patients. And patients will start taking back control of their health. That alone is a revolutionary act, which will lead to a better sense of well-being and hope. Those patients will fare better, thus raising the doctors’ eyebrows again about these methods of self-care that we can use to supplement whatever they prescribe, and he/she will open their minds even more to the idea of using complementary medicine.
I just called a friend of mine to tell her my tests came back negative. She and I were hanging out just a couple weeks ago and I was telling her “My tests are going to come back negative for lupus and some doctor is going to claim that I was misdiagnosed, even though I’ve been diagnosed by probably 20 different doctors by now, tested positive consistently for 16 years, and been through every lupus symptom in the book. And it’s going to make me mad, but in the end, the important thing is I’m recovered from the illness and I know the truth in my heart.” I also have the truth in my reams of lab results.
The biggest leaps in my recovery this time have come since quitting drinking diet soda, starting Chi Gung, and going on the gluten-free/ diary-free diet. The final piece of the puzzle was my declaring and steadfastly believing that I would get the lab results to say “NEGATIVE” for lupus, and they did exactly that today.
How to celebrate? I joked to my husband that we should go out for gluten and diet coke. I thought his face was going to shatter to pieces with all the contortions it was going into. Nope, I’m not going back to my old ways- I’m moving forward, and I can’t think of a better way to celebrate being strong and healthy than to go to Philly and run the Rocky steps! Today, the great lab test results- tomorrow, the world!
Friday, January 30, 2009
Sunday, January 25, 2009
Where in the World is Carla?
Hey everybody!
I haven't posted for a while, as my focus has been completely on my new project: writing a book!
i got a book deal with a small press right after my last post (Fixodent and forget it). The book is set to come out in june. i imagine it'll be a paperback and a reasonable price. that's what i'm shooting for anyhow.
it's a book of humorous essays on illness, hospitals, doctors, drugs, and getting better. the book has some of the same topics as the blog, but it's going to be far more organized. and it won't have nearly as many typos and run-on sentences as my blog. but i promise to keep it sassy.
it's due this week!
i may be just a little late on the deadline because i have to just have the sense to stop when i'm exhausted. no need to create another volume of hospital stories by having another escapade with lupus. i don't deserve that much fun ;)
besides, after 3 times around with this thing, i think i have enough hospital horror stories.
i'll be tapping away on ym computer tonight, tomorrow, and beyond.
meanwhile, i've gone back to doing a little guitar teaching to keep some money coming in. i'm good at it, i enjoy it, and i'm glad to be back to it. i stopped when i moved to new jersey (you lose your students when you move...) and i just spent all my time on the road performing, which is a good way to run down you health.
if any of you have XM radio, check out all the great programs on the Oprah channel, XM 156. wow. so inspiring. i listen jsut about every day, usually to Dr Oz's show. if he were my doctor, i'd have a much higher opinion of the medical community.
well i better sign off for now. just wanted to jot something here so you'd know that no news was good news. i'm well, i'm taking my pills and vitamins, i'm going to the gym, and life is good!
I haven't posted for a while, as my focus has been completely on my new project: writing a book!
i got a book deal with a small press right after my last post (Fixodent and forget it). The book is set to come out in june. i imagine it'll be a paperback and a reasonable price. that's what i'm shooting for anyhow.
it's a book of humorous essays on illness, hospitals, doctors, drugs, and getting better. the book has some of the same topics as the blog, but it's going to be far more organized. and it won't have nearly as many typos and run-on sentences as my blog. but i promise to keep it sassy.
it's due this week!
i may be just a little late on the deadline because i have to just have the sense to stop when i'm exhausted. no need to create another volume of hospital stories by having another escapade with lupus. i don't deserve that much fun ;)
besides, after 3 times around with this thing, i think i have enough hospital horror stories.
i'll be tapping away on ym computer tonight, tomorrow, and beyond.
meanwhile, i've gone back to doing a little guitar teaching to keep some money coming in. i'm good at it, i enjoy it, and i'm glad to be back to it. i stopped when i moved to new jersey (you lose your students when you move...) and i just spent all my time on the road performing, which is a good way to run down you health.
if any of you have XM radio, check out all the great programs on the Oprah channel, XM 156. wow. so inspiring. i listen jsut about every day, usually to Dr Oz's show. if he were my doctor, i'd have a much higher opinion of the medical community.
well i better sign off for now. just wanted to jot something here so you'd know that no news was good news. i'm well, i'm taking my pills and vitamins, i'm going to the gym, and life is good!
Sunday, November 16, 2008
Fixodent and forget it: lessons from a denture commercial
In 2002, I had a major health fiasco- and had no insurance. I had lost my insurance after being fired from my job for being sick. So I went to a teaching hospital, where they took indigent patients (indigent= no money. Not to be confused with indigenous, which is "native people," such as Aborigines or Native American Indians. Although I was born in a hospital, so I guess I was indigenous as well...)
You're not allowed to walk around much in the hospital. Which is quite torturous when you're hopped up on prednisone and want to jump out of your skin. Which, come to think of it, is probably why the windows in hospitals don't open. I entered the hospital shuffling in with a cane and left in a wheelchair. After 8 days of lying in bed, my legs were completely atrophied. Of course, this happens to astronauts too, so I was in good company.
So, after having the physical therapist put a leash around my waist and remind me how to walk for future attempts, I was wheeled out, and my follow-up appointments with the kidney doctor were set at the indigent clinic (indigent= no money. Remember the no money no insurance thing- it's key to the next part of the story). Well the clinic sees all its patients on either Tuesday or Thursday. I was a Tuesday patient, and all of us indigents had the same appointment time: 9am. And it was first-come, first served, so we all showed up at 7:30am for a 9:00am appointment. At 9am, the would start calling us to get our weight and blood pressure, then back to the waiting room, all of us with kidney failure, all of us sitting there usually until noon before being seen, with the water draining down to our ankles as our legs swelled bigger by the hour. I already had feet so swollen I could only wear slippers.
The final insult was that every time I went, I had a different doctor. So every single time, I had to give my entire medical history and re-live all the bleak dark traumatic crap I was trying so hard to not think about, like a crime victim having to testify over and over. About the 3rd time, I had had enough. I brought in a 13-page typed medical history with all my illnesses, allergies, symptoms, surgeries, corresponding dates, and the names and addresses of all the doctors I could remember. I handed it to the new doc and he said "oh, no. I have to take it orally." And I said "Why? So you can pretend to have a rapport with me?" I mean it's not like he was going to be there next month, and it's not like the next doc was going to be able to read anything he wrote on my chart. Furthermore, when you're on 9 drugs, your memory is not exactly tack-sharp.
While my Mr. one-night-stand of a doctor wasn't interested in my hours of meticulous record compilation, I did create a valuable resource that other folks do find useful, especially alternative practitioners such as acupuncturists. A lot of us with chronic illnesses do keep a health file of our own, because if you move or go to several specialists, or both (like me- although I now have insurance and get to see the same doc every appointment, I've moved a *lot*, which means changing doctors a lot)... You really have to be the keeper of your own file.
Get copies of your labs if you can, and keep them. The HIPPA laws require doctors to give you copies of your file, though they are allowed to charge up to $2/ page for them. Doctors (even those who actually do have a rapport with you) routinely throw records away after 7 years, and then they are *gone.* And that leaves you in the position of having to re-live the crime all over again in agonizing detail.
When I was 6, we moved away for one year. In our new neighborhood, we had to walk a mile each way to school and back, and again at lunchtime. Every morning, my mom made me recite our address. To this day, I remember it, in the sing-songy way I used to play it back to Mom every morning. 390 32nd street, Boulder Colorado, 80303. I was very happy in Boulder, so having that address in my head brings back nothing but sweet memories. But I have no desire to have a sing-songy list of every health problem I've ever experienced rattling around in my consciousness like an never-ending nightmare. This is the real reason I made my health file, so that, in the words of the denture adhesive "Fixodent and forget it," I can write it down, get it out of my brain, and think about something else. Like 390 32nd street.
You're not allowed to walk around much in the hospital. Which is quite torturous when you're hopped up on prednisone and want to jump out of your skin. Which, come to think of it, is probably why the windows in hospitals don't open. I entered the hospital shuffling in with a cane and left in a wheelchair. After 8 days of lying in bed, my legs were completely atrophied. Of course, this happens to astronauts too, so I was in good company.
So, after having the physical therapist put a leash around my waist and remind me how to walk for future attempts, I was wheeled out, and my follow-up appointments with the kidney doctor were set at the indigent clinic (indigent= no money. Remember the no money no insurance thing- it's key to the next part of the story). Well the clinic sees all its patients on either Tuesday or Thursday. I was a Tuesday patient, and all of us indigents had the same appointment time: 9am. And it was first-come, first served, so we all showed up at 7:30am for a 9:00am appointment. At 9am, the would start calling us to get our weight and blood pressure, then back to the waiting room, all of us with kidney failure, all of us sitting there usually until noon before being seen, with the water draining down to our ankles as our legs swelled bigger by the hour. I already had feet so swollen I could only wear slippers.
The final insult was that every time I went, I had a different doctor. So every single time, I had to give my entire medical history and re-live all the bleak dark traumatic crap I was trying so hard to not think about, like a crime victim having to testify over and over. About the 3rd time, I had had enough. I brought in a 13-page typed medical history with all my illnesses, allergies, symptoms, surgeries, corresponding dates, and the names and addresses of all the doctors I could remember. I handed it to the new doc and he said "oh, no. I have to take it orally." And I said "Why? So you can pretend to have a rapport with me?" I mean it's not like he was going to be there next month, and it's not like the next doc was going to be able to read anything he wrote on my chart. Furthermore, when you're on 9 drugs, your memory is not exactly tack-sharp.
While my Mr. one-night-stand of a doctor wasn't interested in my hours of meticulous record compilation, I did create a valuable resource that other folks do find useful, especially alternative practitioners such as acupuncturists. A lot of us with chronic illnesses do keep a health file of our own, because if you move or go to several specialists, or both (like me- although I now have insurance and get to see the same doc every appointment, I've moved a *lot*, which means changing doctors a lot)... You really have to be the keeper of your own file.
Get copies of your labs if you can, and keep them. The HIPPA laws require doctors to give you copies of your file, though they are allowed to charge up to $2/ page for them. Doctors (even those who actually do have a rapport with you) routinely throw records away after 7 years, and then they are *gone.* And that leaves you in the position of having to re-live the crime all over again in agonizing detail.
When I was 6, we moved away for one year. In our new neighborhood, we had to walk a mile each way to school and back, and again at lunchtime. Every morning, my mom made me recite our address. To this day, I remember it, in the sing-songy way I used to play it back to Mom every morning. 390 32nd street, Boulder Colorado, 80303. I was very happy in Boulder, so having that address in my head brings back nothing but sweet memories. But I have no desire to have a sing-songy list of every health problem I've ever experienced rattling around in my consciousness like an never-ending nightmare. This is the real reason I made my health file, so that, in the words of the denture adhesive "Fixodent and forget it," I can write it down, get it out of my brain, and think about something else. Like 390 32nd street.
Wednesday, November 12, 2008
Declaration of Independence
Believe me, you want to hang onto your independence as long as you can.
i have lived in my folks' house after being out on my own, and while i was grateful to not be on the street, it made me feel like a failure, not to mention the total lack of privacy.
Then, i lived with a relative who sucked the life out of me with daily 4-hour rants recounting everyone who had ever wronged them. Then i lived in a friend's computer room, and couldn't go to bed each night 'til he was done surfing porn. i'm not kidding. And that was often 3am. I really like the guy, we got along great, but I really needed my own space. But that was not an option because i couldn't work enough to pay my medical debts, and also pay rent. It really sucks to be dependent on someone else once you're no longer a child.
i also have friends who are on disability. a couple of them could go back to work, but they instead dig in their heels and spend a lot of time justifying loudly to everyone why they need to be on disability. they, too are dependent, just not on an individual. SO if you can work and not make your condition, work. You will be happier, and way better off in both the long and short run.
Even if you can't work, or you can only work part-time, it's just so important to have a life other than your illness.
It's also important to actually deal with your illness, though- it's such a balance. You have to face whatever reality there is to face and get the thing under control (by whatever means), so that you *can* have a life. The temptation for most of us is to just plow through, nose to the grindstone, and hope it will go away. It won't. Trust me, I know, I tried it this way and it didn't work. I just got sicker, and thinner, and paler, and more anemic, and closer to death, til I was a walking ghost who couldn't get out of a chair on my own, at 25 years old.
Once your body has gone autoimmune on you, you need some kind of intervention, either with drugs. or lots of acupuncture, or faith healing, or whatever method works for you. It's not a cold, or an annoying person- it's not going to go away if you ignore it.
The good news is, you can- just about guaranteed- get it under control.
i have lived in my folks' house after being out on my own, and while i was grateful to not be on the street, it made me feel like a failure, not to mention the total lack of privacy.
Then, i lived with a relative who sucked the life out of me with daily 4-hour rants recounting everyone who had ever wronged them. Then i lived in a friend's computer room, and couldn't go to bed each night 'til he was done surfing porn. i'm not kidding. And that was often 3am. I really like the guy, we got along great, but I really needed my own space. But that was not an option because i couldn't work enough to pay my medical debts, and also pay rent. It really sucks to be dependent on someone else once you're no longer a child.
i also have friends who are on disability. a couple of them could go back to work, but they instead dig in their heels and spend a lot of time justifying loudly to everyone why they need to be on disability. they, too are dependent, just not on an individual. SO if you can work and not make your condition, work. You will be happier, and way better off in both the long and short run.
Even if you can't work, or you can only work part-time, it's just so important to have a life other than your illness.
It's also important to actually deal with your illness, though- it's such a balance. You have to face whatever reality there is to face and get the thing under control (by whatever means), so that you *can* have a life. The temptation for most of us is to just plow through, nose to the grindstone, and hope it will go away. It won't. Trust me, I know, I tried it this way and it didn't work. I just got sicker, and thinner, and paler, and more anemic, and closer to death, til I was a walking ghost who couldn't get out of a chair on my own, at 25 years old.
Once your body has gone autoimmune on you, you need some kind of intervention, either with drugs. or lots of acupuncture, or faith healing, or whatever method works for you. It's not a cold, or an annoying person- it's not going to go away if you ignore it.
The good news is, you can- just about guaranteed- get it under control.
Did I mention I love acupuncture?
Fiends and family know NOTHING about autoimmune disease if they tell you to exercise through the fatigue! That can make things worse!!! that is dumb advice. It shows the lack of understanding of what happens when your body goes autoimmune. Often the things that are good for you- vigorous exercise, immune stimulants, sunshine- are actually quite harmful when you're in the midst of an active autoimmune disorder.
i will tell you this- i've had lupus since 1992, and i feel my best when i get acupuncture. when i'm in an active lupus flare, i get acupuncture once a week. i can back off to every month when i'm stable. it boosts my energy, helps me sleep, reduces headaches, and helped me heal from the stroke. I also take medications, but the acupuncture also helps me reduce the doses.
Not all acupuncturists are the same. Go after one who is trained in both acupuncture and herbs (you probably don't want the herbs but you do want someone who has the extra training), and ask around for a recommendation, like you would for a mechanic. Plug in your zip code here and search: http://www.nccaom.org/find/index.html
i've had this thing for 16 years so i've tried a lot of things- chelation, bodytalk, electronic biofeedback, lymphatic massage, herbs, vitamins, dental procedures... i swear by acupunture. that and diet modification. google "anti-inflammatory diet." generally, you want to eat as lowfat and vegan (no animal products) as possible, also avoiding processed sugar and junk food, such as sodas, esp. diet soda.
when i was off sugar and on acupuncture for 18 months, i felt like me again. i really gotta kick sugar again... meanwhile though i am getting acupuncture and i do chi gong in between visits, something easy, simple, and free i can do at home in any weather that only take 15 minutes a day.
i will tell you this- i've had lupus since 1992, and i feel my best when i get acupuncture. when i'm in an active lupus flare, i get acupuncture once a week. i can back off to every month when i'm stable. it boosts my energy, helps me sleep, reduces headaches, and helped me heal from the stroke. I also take medications, but the acupuncture also helps me reduce the doses.
Not all acupuncturists are the same. Go after one who is trained in both acupuncture and herbs (you probably don't want the herbs but you do want someone who has the extra training), and ask around for a recommendation, like you would for a mechanic. Plug in your zip code here and search: http://www.nccaom.org/find/index.html
i've had this thing for 16 years so i've tried a lot of things- chelation, bodytalk, electronic biofeedback, lymphatic massage, herbs, vitamins, dental procedures... i swear by acupunture. that and diet modification. google "anti-inflammatory diet." generally, you want to eat as lowfat and vegan (no animal products) as possible, also avoiding processed sugar and junk food, such as sodas, esp. diet soda.
when i was off sugar and on acupuncture for 18 months, i felt like me again. i really gotta kick sugar again... meanwhile though i am getting acupuncture and i do chi gong in between visits, something easy, simple, and free i can do at home in any weather that only take 15 minutes a day.
Subscribe to:
Posts (Atom)