At this point, I no longer have fibromyalgia symptoms and haven't for a while.
I attribute that to... well, not any one thing because I'm usually doing more than one thing to improve my heath, and it usually takes more than one thing to do just that.
In my case, I (finally!) gave up diet soda and anything else with nutrasweet in it, and went on a gluten free diet, both about 2 years ago. Since then I also resumed acupuncture, have done chi gung, sometimes more consistently than others, and I walk 30-50 minutes a day, 6 days a week.
I haven't had symptoms in a long time, aside from unrelated tendinitis in my right shoulder. That i am dealing with via physical therapy.
However, a friend of mine just got diagnosed with fibro so I was giving her some advice and was looking for some links on the web so she could do a little reading, and I found this great site with lots of good info all in one place. So I figured hey I'll share with on my blog. Not uncommon for people with lupus to also suffer from fibro. Here ya go:
http://www.basic-keys-to-natural-health.com/all-natural-cure.html
One last note- If i want my fibro to recur, all I have to do is go jogging. Why, I don't know, but that is my experience.
Well wishes!
Friday, October 22, 2010
Monday, October 18, 2010
Clinical Trails
There are a bunch of new clinical trials for lupus.
Some are for drugs, some for stem cell transplants.
Go here
http://www.clinicalconnection.com/SearchStudies.aspx
where it says "keywords" type in "lupus"
then click the "search" button
There are currently 4 studies shown in their database, but look below that and click the red link that says "Show results from other databases" and a whole bunch more will pop up, including all the stem cell studies.
Some are for drugs, some for stem cell transplants.
Go here
http://www.clinicalconnection.com/SearchStudies.aspx
where it says "keywords" type in "lupus"
then click the "search" button
There are currently 4 studies shown in their database, but look below that and click the red link that says "Show results from other databases" and a whole bunch more will pop up, including all the stem cell studies.
Friday, October 8, 2010
cycles
So here's something I've been mulling over for a very long time: vicious cycles. And whatever the opposite of that is- heathy cycles?
When I'm in pain, I can't sleep. And when I can't sleep, it runs me down and I'm in more pain. Here I am, the person who needs sleep the most and I can't get any. How do I break this cycle? It has to be interrupted with something like ice, heat, massage, acupuncture, pain pills, death... The last option works, but it kind of misses the point of getting rid of pain, which is to me, to get back to my life. The problem with pain pills (and most pills) is that if you never get to the bottom of what is causing the pain and eliminate the problem, then you become dependent on the pills. But I digress. This post is supposed to be about cycles. So let's look at another cycle.
Let's say something really bums you out. Like you lose your job. It's much easier to find a job when you have a job, because you believe you are hire-able, desirable, kinda of like in high school when you tell your friend you like a boy and now all of a sudden she wants to go out with him. ( I really should have told that so-called best friend I had a crush on some dirtbag just to see if she would go after him, too. But I digress, again). So now you can't get a job because you don't have a job. The person who has a job is getting lots of offers, but the one who needs a job the most can't get one. How do we break this cycle? Volunteer work? Internships? retraining? more school? Affirmations? I don't know- something has to interrupt this cycle.
This happens in personal relationships as well. Like say someone doesn't help with housework, so the other person decides to stop cleaning and start hoarding junk in the garage. Then they get into a sort of Mexican standoff and neither one will change until the other does. It can get so bad that the only hope is to call the TV show CLean House and have them rescue them form their own behavior and broadcast their insanity for all the world to see.
When we are sick and in pain it can be hard to keep a sunny outlook. Chronic pain can really drag you down. Sleep deprivation can drag you down at least as fast. The double whammy of the two can make you forget how to laugh or even smile. But it is so important that we find a way to send positive vibes through our body, because unhappiness creates disease.
Something has to come along and cause a "pattern interrupt."
A good laugh, a fun activity, some affirmations, a massage (a bunch of massages...), playing with a dog, making a collage... What do you do to create positivity in your life?
When I'm in pain, I can't sleep. And when I can't sleep, it runs me down and I'm in more pain. Here I am, the person who needs sleep the most and I can't get any. How do I break this cycle? It has to be interrupted with something like ice, heat, massage, acupuncture, pain pills, death... The last option works, but it kind of misses the point of getting rid of pain, which is to me, to get back to my life. The problem with pain pills (and most pills) is that if you never get to the bottom of what is causing the pain and eliminate the problem, then you become dependent on the pills. But I digress. This post is supposed to be about cycles. So let's look at another cycle.
Let's say something really bums you out. Like you lose your job. It's much easier to find a job when you have a job, because you believe you are hire-able, desirable, kinda of like in high school when you tell your friend you like a boy and now all of a sudden she wants to go out with him. ( I really should have told that so-called best friend I had a crush on some dirtbag just to see if she would go after him, too. But I digress, again). So now you can't get a job because you don't have a job. The person who has a job is getting lots of offers, but the one who needs a job the most can't get one. How do we break this cycle? Volunteer work? Internships? retraining? more school? Affirmations? I don't know- something has to interrupt this cycle.
This happens in personal relationships as well. Like say someone doesn't help with housework, so the other person decides to stop cleaning and start hoarding junk in the garage. Then they get into a sort of Mexican standoff and neither one will change until the other does. It can get so bad that the only hope is to call the TV show CLean House and have them rescue them form their own behavior and broadcast their insanity for all the world to see.
When we are sick and in pain it can be hard to keep a sunny outlook. Chronic pain can really drag you down. Sleep deprivation can drag you down at least as fast. The double whammy of the two can make you forget how to laugh or even smile. But it is so important that we find a way to send positive vibes through our body, because unhappiness creates disease.
Something has to come along and cause a "pattern interrupt."
A good laugh, a fun activity, some affirmations, a massage (a bunch of massages...), playing with a dog, making a collage... What do you do to create positivity in your life?
Monday, September 6, 2010
Totally sold on PT
For those of you who follow my blog, you know I've been dealing with chronic pain in my upper body for 18 years. I (and my doctors) blamed it on lupus and fibromyalgia. But then all the other pain went away (after I changed my diet, got acupuncture, and did qigong daily). And the pain in my right shoulder remained, and it was driving me crazy, keeping me up all night, and so relentless that no pain medication of any kind worked on it any longer- not advil, not aleve, not heating pads, not icy hot, not even vicodin or percocet. Not even 2 percocet at once. So, finally, I went to the urgent care clinic and tried to get a diagnosis. An MRI and 2 XRays later, we now know I have a tumor in my arm, which is probably benign (we're watching it for the next year or so), but the real problem is tendonitis and an impingement, both of which have responded really well to physical therapy. PT was my idea, by the way, not my doctor's. I had to ask for a prescription, but thankfully, he was happy to write a Rx and it has worked like a charm. I have been pain-free for about 4 weeks- I haven't taken anything at all for pain.
A couple words of advice on PT- like doctors, they are not all the same. Ask around to your friends for a good, effective PT, and see if you can get into a sports medicine clinic. Those folks are completely focused on getting you back to doing what you were doing before.
Well wishes and happy trails.
Carla
http://www.thesingingpatient.com
A couple words of advice on PT- like doctors, they are not all the same. Ask around to your friends for a good, effective PT, and see if you can get into a sports medicine clinic. Those folks are completely focused on getting you back to doing what you were doing before.
Well wishes and happy trails.
Carla
http://www.thesingingpatient.com
Monday, August 16, 2010
radioactive
Well, that was an adventure. I went in to the cancer center for the radioactive isotope test Friday.
I really don't like going to the cancer center. If my doctor wasn't so nice, I'd just stop going. It's a seriously difficult place to be. And I gotta say I feel really weird being the healthiest person in the place (not counting employees).
Right now, I'm feeling pretty good- thanks to PT, I'm pain-free and no pain meds for 2 weeks. I even recently managed to (at last) wean off my sleep med, after 4 years of taking it. So now all I'm taking is 1 blood pressure med, 2 herbs, and a multivitamin. Thanks to my gluten free mostly vegan diet, my hair and skin are healthier. And I don't weigh myself, but I seem to be a size smaller than I was last year. Maybe even 2 sizes. I'd like to stay feeling well. It never seems to last long. I'm doing everything in my power to get and stay healthy, and I don't want a setback.
So you can imagine that when walking the halls of the cancer center past people on stretchers that look like they are on their last gasps, I'm really hoping to not need the treatment that they're getting. I can't help feeling quite a bit of anxiety every time I walk in that place.
We had to wait 3 hours after the injection of radioactive isotope before I could get the test. So I decided to live out one of my odd little fantasies: I always wanted to take a nap in central Park. Because NY City is so freaking hectic, I just wondered what it would be like to be right in the middle of the most insane city on earth, and take a nap. I brought a blanket, and Joe and I did just that. (bucket list: check){note: if this is your fantasy too, I strongly suggest not doing this alone- and choose a heavily populated area and maybe wrap your purse strap around your leg }
Now back to the cancer hospital, where I nearly had a panic attack when they brought that bone scanner camera down to about 2 inches from my face and left it there running for 10 minutes. That and I knew I was getting exposed to radiation. Which, ironically, causes cancer. The whole test took about an hour. That's a lot of radiating.
A hour later, see the doctor, still can't make a definitive diagnosis- my tumor defies easy categorization, so we're going to xray it semi-regularly to make sure it's not growing. OK, fine.
Now I've spent the entire day getting this test and waiting for answers that didn't come, so I'm in dire need of comfort food. I remember a classmate from a creative writing class who said he had a restaurant in NYC that served nothing but mac and cheese- including gluten-free mac and cheese. Now if mac and cheese isn't comfort food i don't know what is. Couldn't remember the name of it, so i called a friend who looked it up online (no i don't have an iphone- i can't use that annoying screen to type). S'mac! That's the name of it. And yeah it was YUM, although my stomach was confused by the sudden bombardment of cheese. Next time I'll get the vegan gluten free mac and cheese- yes they have vegan too! The I asked if they had gluten free cookies and they said no, but there's a GF bakery on the next block!!! So we went I and had 3 miniature GF cupcakes! My Italian husband was so delighted to see me overeating...
I really don't like going to the cancer center. If my doctor wasn't so nice, I'd just stop going. It's a seriously difficult place to be. And I gotta say I feel really weird being the healthiest person in the place (not counting employees).
Right now, I'm feeling pretty good- thanks to PT, I'm pain-free and no pain meds for 2 weeks. I even recently managed to (at last) wean off my sleep med, after 4 years of taking it. So now all I'm taking is 1 blood pressure med, 2 herbs, and a multivitamin. Thanks to my gluten free mostly vegan diet, my hair and skin are healthier. And I don't weigh myself, but I seem to be a size smaller than I was last year. Maybe even 2 sizes. I'd like to stay feeling well. It never seems to last long. I'm doing everything in my power to get and stay healthy, and I don't want a setback.
So you can imagine that when walking the halls of the cancer center past people on stretchers that look like they are on their last gasps, I'm really hoping to not need the treatment that they're getting. I can't help feeling quite a bit of anxiety every time I walk in that place.
We had to wait 3 hours after the injection of radioactive isotope before I could get the test. So I decided to live out one of my odd little fantasies: I always wanted to take a nap in central Park. Because NY City is so freaking hectic, I just wondered what it would be like to be right in the middle of the most insane city on earth, and take a nap. I brought a blanket, and Joe and I did just that. (bucket list: check){note: if this is your fantasy too, I strongly suggest not doing this alone- and choose a heavily populated area and maybe wrap your purse strap around your leg }
Now back to the cancer hospital, where I nearly had a panic attack when they brought that bone scanner camera down to about 2 inches from my face and left it there running for 10 minutes. That and I knew I was getting exposed to radiation. Which, ironically, causes cancer. The whole test took about an hour. That's a lot of radiating.
A hour later, see the doctor, still can't make a definitive diagnosis- my tumor defies easy categorization, so we're going to xray it semi-regularly to make sure it's not growing. OK, fine.
Now I've spent the entire day getting this test and waiting for answers that didn't come, so I'm in dire need of comfort food. I remember a classmate from a creative writing class who said he had a restaurant in NYC that served nothing but mac and cheese- including gluten-free mac and cheese. Now if mac and cheese isn't comfort food i don't know what is. Couldn't remember the name of it, so i called a friend who looked it up online (no i don't have an iphone- i can't use that annoying screen to type). S'mac! That's the name of it. And yeah it was YUM, although my stomach was confused by the sudden bombardment of cheese. Next time I'll get the vegan gluten free mac and cheese- yes they have vegan too! The I asked if they had gluten free cookies and they said no, but there's a GF bakery on the next block!!! So we went I and had 3 miniature GF cupcakes! My Italian husband was so delighted to see me overeating...
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