Thursday, October 28, 2010

Celiac and lupus

have you ever thought of getting tested for celiac disease?
I'm going to ask my rheumatologist to add that to my blood tests next time I see him.
what is interesting about celiac is that it can lead to other autoimmune diseases. it would explain some things, certainly for me.
And by some things i mean my life for the last 18 years.
i mean if i have celiac, then i know my problems are caused almost entirely by diet, and not by some other crazy ideas like bad karma, sin, luck or even genetics, which no one has ever been able to prove.

Celiac Disease is diagnosed via blood tests, a physical exam, and an endoscopy/ biopsy. I'm not crazy about that last part, as it means being sedated, running a thingy down my throat and getting 8-12 samples snipped out of my small intestine. The ONLY reason I would consider doing it is to finally once and for all know what started this whole mess.

Celiac disease is treated by avoiding gluten (mainly wheat, which hides in many products) and for some people, also diary. That means giving up a lot of tasty food, but you know, I'm willing to do that if it means I never have anemia, pleurisy, faitgue, kidney failure, congestive heart failure, stroke, hair loss, depression, neuropathy, migraines, swollen legs/ ankles/ feet, and oh yeah,
prednisone, cellcept, cytoxan, attivan, paxil, clonodine, nifedical, norvasc... yeah, I'll swap eating pizza for getting my life back. There is more to my life than eating junk food! Or at least there will be once i'm fully healed.

Friday, October 22, 2010

Fibro relief

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:

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!

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

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


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?