So where am I now? How is my Lupus? almost Spring 2009
Posted Mar 16 2009 12:00am
Well right now after all my hard work and having changed my diet for over a year now, I still have double stranded DNA, I have antiphospholipid antibodies, I have a positive ANA, I still have some painful days. I get very stiff joints some days. I still seem to have sun sensitivity but will check more when the weather gets warmer, I am in NY and it is still winter and very chilly here. I am very tired (fatigued) some days, more than others.
I have figured out that my red face means I have eaten something my body doesn't agree with, either an allergy or an intolerance. I figured out that my face would get red(Lupus rash) when I eat wheat, tomatoes or tomato sauce, or corn, (also when I am in the sun too long.) I figured this out through keeping a food/symptom diary.
On the positive side, my face rarely gets red anymore, my migraines have gone away, my acid reflux went away, my restless leg syndrome went away, I lost 30lbs, and my cholesterol went down 14 points(I don't eat cheese/dairy or red meat, very little chicken, no eggs because of my allergies and being health conscious). I have no sores on my face or scalp(discoid Lupus), they went away. Where I had sores on my scalp the hair has grown back!(I've read that the scarring from the discoid Lupus makes that impossible. BOLONEY!) Another positive is I haven't caught a cold in a very long time(my kids have been sick and I didn't catch their illnesses either!)
I am not on any medications at this time, not even aspirin, but I do supplement my Vitamin D-3 and calcium and magnesium. I also take UltraInflamex360 Plus by Metagenics that was given to me from the chiropractor/nutritionist. It has lots of ginger and turmeric(anti-inflamatory and blood thinning) and vitamins in it. I also try to eat as much healthy anti inflammatory, and other blood thinning foods as well.
I get monthly chiropractic treatments as well as craniosacral treatments.
I try to get exercise each day, just a little, if I am feeling too tired, I find the exercise lessens the stiffness, even if I am very stiff at the beginning.
Because of possible kidney problems with Lupus I don't eat very much salt and try to have VERY little fried food if at all, also dry foods are not good, like chips, rice cakes etc.
One thing that is hard to hide is my frustration with doctors. I feel that doctors form their own opinions and many of doctors are very hard to talk to. For instance I had been seeing 5 doctors at one time, an GYN Oncologist(I had pre cancerous cells in my cervix), a dermatologist specialist, a breast surgeon(had a possible mass in my breast), my general physician, and my rheumatologist and all 5 doctors knew I had Lupus with sun sensitivity and none of them told me to get tested for Vitamin D deficiency. Finally the chiropractor/nutritionist asked me to get tested, but my blood work would not be covered with my insurance through her, so she asked me to see if my general physician would order the test. After fighting with him, he finally tested me and my D levels were extremely low! I thought Vitamin D was in the news so much lately that surely all doctors were aware of the importance of testing and supplementing if a person had low levels but that just wasn't the case!
If you find a doctor that you can talk to and trust, this is worth it's weight in gold! Be very thankful if you have such a doctor!