July 31, 2009

My life's priorities

This is a list of what I try to fit in each day(or week) to make my life run smoothly this is in no specific order of importance:

1)The BEST Nutrition/Cook/prepare foods
2)Clean/organize my house
3)Deal with finances
4)Play kids/family time
5)Date/Relationship time
6)Care for and play with my animals
9)Research Lupus/healthy living

It all doesn't always get incorporated but I try to do my best. And I try not to beat myself up when I miss some things...I find it definitely helps to have a plan, I keep this list in my kitchen where I see it often. Try and make your own list of priorities and hang it where you will see it.

July 30, 2009

More on the Celiac Meeting with Dr. Peter Green

Things I learned at the meeting:

Getting tested for the genes HADQ8 and HADQ2(Celiac Disease genes) from Kimball genetics with a cheek swab can rule out the disease, if you don't have those genes you can't have the disease. (on the other hand 40% of the population has the genes and only 1% actually gets Celiac Disease so the test will not prove that you have the disease)

Dr. Green said possibly to get family members tested to see if my siblings/ parents have it. Well my parents are gone, but I will ask my brothers.(I don't want to do a gluten challenge and jeopardize my health and it still may come back a false negative.) I feel bad asking them, but I feel it could help me and them.

Testing PTH (parathyroid hormone) will show if your parathyroid is taking calcium from your bones and causing osteoporosis(if you just test your calcium in your blood it may still be normal levels because your parathyroid is stealing the calcium from your bones to have the correct calcium serum level in your blood)

I will get tested for osteoporosis too

Vitamin B6 in high doses can cause nerve problems(neuropathy) a normal person in the US gets enough of this vitamin in their food(Methyl Protect supplement that I take has 500xthe RDA of Vit B6 with the B12 that I need and my doctor told me to take 2 capsules a day, I have only been taking 1 capsule but I am afraid that is too much B6 ,and I was never tested to see if I have enough B6 by a blood test AHHHHH! I get angry at doctors!!!!)

He said to check your copper levels(I forget why) , but more reason to do the micronutrient testing...

I learned some more too, but these are things I want to focus on with my doctors. I will see my holistic MD on Aug 6th and try to ask her nicely (or demand ...if I have to) to give me prescriptions for these tests. God is teaching me and helping me along...but I find it so frustrating and upsetting that I have to do so much research and learning and that the doctors just don't know as much as you think! I feel as if I am going through a maze of learning....I am picking up bits of "cheese"(keys to my health) along the way.

July 29, 2009

A Celiac Talk with Peter Green

Went to a talk on Celiac Disease last night with Peter Green . It was VERY interesting, he urged me to get the Gene Testing for Celiac Disease because if I don't have the gene for Celiac Disease it would rule that out. I will do this when I figure out which doctor can do this test for me. I know I either have Celiac Disease or wheat/gluten intolerance because I feel better when I don't eat gluten and I get stomach problems(diarrhea) when I eat gluten. Also my aches and pains get lessened without the gluten, of course at this point I am allergic/intolerant to so many foods(Peter Green said that this happens with the leaky gut caused by celiac or gluten intolerance so he supports that theory) He suggested an exclusion(elimination) diet to test for allergies and that's what I found best also.

I also have decided I definitely want to become a licensed nutritionist/dietitian. I had been thinking seriously about this, but now I am positively going for it! I need to find out where to go for classes and where I can get financial aid. Wish me Luck!!!!

My Lupus Diagnosis Story...

Here is the story of how I was diagnosed with Lupus...

A little before hand...I had an unexplained "grand mal" seizure about 7 years ago(never knew at the time that seizures are a symptom of Celiac Disease APS and Lupus)
Then about 3 years ago had issues with a mass in my breast and cervical pre cancer cells from HPV, not really related but still a sign I needed to take care of myself better.

Also when I lived in Texas for a couple of years
I was having blurred vision, numbness and tingling, panic attacks, dizziness to the point that I could not move ,severe migraines, and more. I was tested then for MS but did not have it. They never even thought to test for Lupus or for Celiac Disease, which I know could have been a definite diagnosis back then.(Read Peter Green's book "Celiac Disease : A Hidden Epidemic" for symptoms of Celiac Disease)

OK now to the nitty gritty... I developed a round disc shaped sore on my nose that wouldn't heal. My doctor send me to a dermatologist. She thought it was skin cancer and did 3 biopsies, but they all came back negative. She decided I had enough skin damage on my nose to try a drug(fluoroconizole???) that I was to put on my nose and it literally peeled the skin off my nose, it was disgusting!

Well nothing got better so the dermatologist sent me to a dermatologist specialist. He looked at the sore and my biopsies and was totally confused. He decided to cut the entire sore off my nose(I still have the scar) and send it to a special lab(the biopsy labs kept saying there was no cancer just inflammation.)

He got the results back and said the lab thought the sore on my nose was consistent with Discoid or Cutaneous Lupus. Went back to my primary care doctor and he sent me to a rheumatologist.
I talked to the rheumatologist and realized that many of my aches and pains were not normal aging as I had thougtht. They ran blood tests and urinalysis and confirmed that I had Lupus.
They said it looked mild and it may only be Cutaneous Lupus. I had an ANA of 1:80 not that high and Antiphospholipid antibodies and DS DNA. Then the rheumy I had been seeing was out indefinitely, found out later he was ill. His partner took over my case. He said that I must take plaquenil and a baby aspirin each day. I researched this and found out the meds were very dangerous, I decided not to take the meds and research more.

Then the new doctor that was taking over the case said that I would need to go see him at another office that was an hour away. I decided not to continue with him and got the name of a new rheumy.
The new rheumy didn't work out , and then my neighbor gave me a recommendation of their rheumy that they liked ,so I went to see her. She is the same rheumy that I have today, she is a pretty good doctor, but has many flaws with her thinking. My highest ANA was 1:160 and I have DS DNA and Antiphosholipid antibodies, this rheumy believes from my blood work and my symptoms that I have full fledged Systemic Lupus . This rheumy offered me medications but said it was my choice whether I take them or not, and I have chosen not to. That is one thing that I appreciate about this rheumy is she gave me the choice and did not force me to take meds.

The story continues when I met Dr. Gazoni (a nutritional kinesiolgist) on one of my first posts on this blog. Once I met her I changed my diet and the rest is history I have felt so much better with this change in diet.(PS I told my present rheumy that I was going to change my diet and she said do what you want but it doesn't make a difference what you eat(mind you ,,she wrote 2 papers on Celiac and Lupus going together hand in hand!!!!)

July 26, 2009

Lupus diagnosis story ...coming soon

Someone had asked how I was diagnosed, I will write about it shortly. I have written the story down, but I am a very poor and slow typist, but I will post it SOON! Have a GREAT day! Believe that you can GET WELL! I will be back after "Unplug Monday"!

Mondays are no Electricity Days

We have decided to try to implement a new idea here, no electricity days.
I figured we all spend too much on the computer, and playing video games, and we can save money too and get valuable family time together by "unplugging" one day a week. I am going to try to work up to 2 or 3 days a week. We are going to try to unplug everything but the 2 fridges and 2 freezers that we own. I am still undecided about the stove, to grill outside or not???? that is the question...today is the first "unplug Monday" and we will start in a few hours. I went to sleep really early 8:30pm! Was "wiped" from the dog disc seminar, and now I am up typing when I should be sleeping...I know BAD Toni...but I don't do this too often.

I first heard this from a woman on Oprah that saved tons of money on her electricity bill by unplugging ... Hey! I'll give it a whirl!

A couple of not so good days...

Around "that time of the month" this month, I was a little more tired than usual, more joint pain and had a sore(ulcer) in my nose and sores in between 2 teeth in my mouth also. I don't know if I had labeled this symptom of my Lupus I have to look back at that post.

I have heard and read that mouth sores and nose sores can be a symptom of celiac disease(never tested for Celiac but could have it from my symptoms) and /or Lupus. Occasionally I get these...it has been getting less though. I wonder if this is caused by any type of deficiency? I have been taking my vitamins/minerals religiously, but maybe it is something I haven't been taking supplements for yet...? Maybe caused by hormone fluctuations? Also was getting a sun sore on my nose(outside of my nose - discoid Lupus) but it is trying to heal on it's own. Usually I get the beginning redness and a pinchy feeling if I touch my nose by the area of the sore, but they heal themselves before becoming an actual open sore.(never gets scabby and crusty anymore like in the past) I also got the slight "sore throat" that sometimes bothers me too.

I am starting to feel better again, though I went to a "Dog Disc"(frisbee) seminar and felt pretty stiff there(neck and shoulder joints) by the end .(it was 4 hours long) Once I got home I was more relaxed. I did throw the frisbee a lot and also sat in a plastic chair in between turns. Sitting still does definitely stiffen me up more, whether driving in the car or sitting at a meeting.

I seem to be having less bad days though, the B12 supplementation seems to be helping with the heart palpitations I've had lots less, and it does seem to be helping with my enegry levels too.
Everyone that has Lupus should ask their doctor to test B12 and D3 at least... and anything else that you can get your dctor to test for deficiency wise. I think many doctors don't "go there"- looking for deficiencies (my regular primary care physician didn't) and they SHOULD!!!!

July 23, 2009

OK I am NOT "Martha"!!!

I am NOT SUPER woman. I am NOT! I promise! I am NOTHING like Martha Stewart!
Just to clear up and make everyone see what I have is attainable.(Cooking/preparing many meals for myself and my family)
OK here goes, cooking is my "prescription" yes it's what I "take" instead of medications so it is a LARGE responsibility and priority. That being said...I wish everyone that needed to change their diet to help their disease could get a "prescription" fror a "personal chef" to make them healthy foods (HEAR that Obama!!!! heard he wants to have healthcare reform...)

Sometimes I feel too tired to cook/prepare, sometimes I feel to tired to shop for the food to make. I am NOT perfect! Sometimes my husband feeds himself and the kids dinner, or the kids prepare their own meals. I am teaching my children to cook to lessen my workload. Sometimes I make something for my husband and I and my husband makes the kids dinners. Sometimes I ask my husband to make a meal for me, and I don't cook at all.(though that's not too often)

Many of you may have heard the "Spoon Theory" on Lupus from the "But you don't look sick..."
website. I have taught it to my children well.... they know if they help mommy, mommy will have more spoons left over to do things with them. The way the spoon theory goes is, that you are given an alloted amount of spoons(energy) per day with Lupus and each task during the day takes spoons away from your inventory... and when you are done for the day you are done and need to lay down and rest for the night.(or afternoon ) Please reach out to all that can help you...don't do everything yourself, don't spend all of your spoons on chores and what must be done.
Save some of your "spoons" for some fun!

Also my home usually looks like a bomb hit it, (cleaning is NOT my priority, COOKING is!)
I try to play with my dogs/children each day...but if I don't get to it they'll still love me! You can walk through my house it's not as bad as the people on Oprah where the people have wall to wall stuff and they can't sleep on their beds or grow mold under the stuff all over the floor...those shows always make me feel better because then my house looks so much better in comparison. My car is not washed my clothes are not perfectly folded...oh the list goes on. Nutrition is what is my priorty in life at this point.

****CAUTION**** Food is what I choose for my medicine and I am lucky enough not to need medications for my Lupus at this time, HOWEVER if you are taking medications for Lupus or any other disease never stop them without your doctor's OK and if you are interested in weaning off or stopping your medications try to see a GOOD naturopathic doctor (get recommmendations!!!) if you decide that is what you want for your life. It is a personal decision to ber made by your doctor and yourself. Remember YOU are in charge of your body and you owe it to yourself to find a doctor that will work with you the way you want them to. I personally have a rheumotologist(not holistic at all and doesn't believe in diet helping Lupus symptoms) a naturopathic doctor(totally holistic and believes in diet helping Lupus) and a holistic MD(mostly holistic and believes in diet helping all diseases). I try to work with all of them to get the care I feel I need.

Dr. Schultze...

A friend of mine said she uses Dr. Schultze's products. I went to look at his site and found this:


Definitely worthy of sharing!

July 21, 2009

Read "The Unhealthy Truth"

I have just started reading the book "The Unhealthy Truth" by Robyn O'Brien. It is a REAL EYE OPENER! I cannot put the book down! Please do yourselves a favor and read this book, I hear she has a website too. This woman has unearthed much hidden information about our food supply in the US. I have to e-mail Robyn and tell her I am behind her 200%! Have a GREAT day everyone!

July 16, 2009

Latest protocol

The things I do lately for my health

"Power eating" eat mostly for detoxing/nutrition
Supplement B12,D3,Magnesium, Calcium
Have less toxins in my home environment
Stress less
Eat in a peaceful environment
Chew food LOTS!
NAET treatments
Try to get exercise(easier now, in the summer)

July 15, 2009

What am I up to lately...

I realized I have some discrepancies in posts on my blog on what I am eating:
As of July 09:
I went back to eating salmon, flounder,ground turkey and very little chicken(because of the B12 deficiency scare) I also take B12 supplements I eat one small servng of meat per day.
Otherwise I eat mostly "raw food" (Raw veggies, fruits,seeds,nuts,I have adding some seed sprouting too) and some macrobiotics.(cooked grains and cooked veggies,beans, soups, etc.)
I DO NOT eat eggs, wheat, bananas, tomatoes, peppers(hot or mild), corn,yeast,lamb, beef,dairy,wheat, gluten(wheat barley oats rye),oranges/grapefruits,asparagus,cranberries,onions,buckwheat, sesame, garlic

I try to limit or not eat soy, eggplant? potatoes?sugar,salt,peanuts, apples,coffee, shallots, GF oats. The jury is out on so many foods...it's hard to know if I have an issue with some(this is the short list of what I am confused about can I eat these or not???? )

I also supplement my B12 (Methyl Protect), D3, Magnesiun, and Calcium.

What comes next...July 09

These are the tests/things I want to look into next:

1)test and treat heavy metals
2)test for a virus in my blood(from Suzanne Somers book)
3)test for parasites
4)check our why my neck "cracks" so much
5) go back to the chiropractor
10)bad tooth out
11)celiac blood test
12)stomach acid test
13)retest B12 and D3 in about 3-4 months
14) investigate colonics/enemas
15) Dr. Dave? Dr Sherry?
17)take uva ursi
18)investigate cetyl myristoleate
19) FAR infrared sauna

Some of these are pipe dreams because of lack of the money to accomplish them, but I will do what I can....

July 10, 2009

Another Great book

Never thought I would be suggesting you read a book by Suzanne Somers but her book "Breakthrough..." is GREAT! She has gotten many breakthrough doctors together and compiled their information and interviews the doctors in the book. . I have heard about Biodentical Hormone Replacement but need to do investigate/research it, otherwise this book follows my research also. I highly recommend this book! I saw it in the book store and then requested it from my library to save money.

No time for cooking/preparing foods???

Someone said to me recently that "Toni must have more time than brains" to cook this much/this often for my health. Boy that hurt my feelings...but what else did she say that hurt me to my CORE??? "Toni must not have Lupus terrible enough because she has the energy to cook so much." This was on a Lupus list!!! I was not supposed to see her comment, or maybe she "planted it" so I would see it, I don't know which. (PS I HAVE the ENERGY to cook because I EAT so well! When I am tired my husband and kids step up and help me!)
Well I say back to her and others, first, she should know better! Shame on her! ANYONE that has Lupus of thinks they have Lupus, has Lupus ENOUGH!!!!
My blood tests show that I have it and I pray to God that one day He will deliver me from it!
I hope He gives me the wisdom to overcome it or at least live in harmony with it AND I want to share ALL the info I get on being healthy with as many fellow Lupus sufferers/and sufferers of any other disease that I can.
Well I do cook/prepare at home A LOT!
My 3 dogs/2 cats eat a raw food diet(raw meat that is). My family has several allergies that require special foods with me having the MOST allergies needing the most specialty foods.
On a happy note you can make a healthy diet as easy or as hard as you want it to be. You could have bananas/strawberries for breakfast no cutting or slicing, just eat. You could just grab a piece of fruit nectarine, peach, apple, and some nuts for a snack.
Much of a raw diet(my raw diet is vegs, fruits nuts, seeds) is actually faster than REAL cooking.
Macrobiotics is much more cooking/labor intensive.
You can also cook on one day and freeze/refrigerate for the week/or a few days.
I look at this as a labor of love for my family and myself and we are worth the investment of the time it takes to cook/prepare salads and healthy foods rather than cruising through the drive through of a fast food restaurant! We take a cooler of vegs fruits/nuts seeds(sometimes I combine them into delicious treats/foods) when we go out or when we go camping or on a picnic.
For macrobiotics you can cook a great big pot of grains (store in the fridge) and steam some veggies and you've got a lovely meal. We are also at the grocery store/farm stand more with this way of eating to have the tons of delicious fruits/veggies that we need for our healthy diet. See http://lupushopecookbook.blogspot.com/ for recipe ideas. PS my headache joint pain from the other day is gone(my shoulder still hurts and I will ask the accupuncturist about that tomorrow whe I see her.)

Update on doctor's tests/Pep talk to take a "Leap of Faith"

The echo-cardiogram came back normal.
After all the scares and worry about my Antiphosphilipid Antibodies (higher blood clotting possibility)my INR is normal at 1.1
my prothrombin time is normal too at 11 seconds. That makes me feel better about that.
My cholesterol is a 164 (under 150 and you have virtually no risk of heart disease- I'll try to get it to 150)
When I bring up my change of diet many people say "Good for you, I could never do that!"
Well I never thought I could do it either, I was the biggest junk food junkie out there.
When I saw books that said what to do, then saw a nutrtionist and she agreed on what I needed to do, then saw an allergy test and it agreed, I finally gave it the old leap of faith changed my diet, and felt better. Now.... if I feel better and my blood tests show I'm better and I'm not just imagining it...How on EARTH would I want to eat junk food again. I am a good cook and I CAN make things to satisfy my cravings for certain foods, although when you change your diet you become more peaceful in mind and body and many, if not all, of your cravings WILL go away! You just need to give it the old "Leap of Faith!". I was reading "Pain Free in 6 Weeks .." again and Dr. Rogers says "If you are in enough pain(suffering/sickness)you WILL change your diet!" Good Luck to ALL of you!
See my http://lupushopecookbook.blogspot.com for recipe ideas. Yum Yum eat 'em up!

July 9, 2009

Ways to save to buy organic food

I REALLY believe in organic food not just for our health, but for the health of the planet. If I can find an organic variety of the food I want to purchase, I do.

Ways that I save money to buy organic food(I KNOW it can be expensive)
1)Take out DVD/movies from the public library
2)Shop at the local farm stand
3) Shop for clothes at the Salvation Army or thrift stores(not all, but lots)
4)Have cars without the payments(we don't lease cars and keep them past their primes the repairs are still cheaper than a car payment)
5) Not many vacations(or we camp)
6)Mow our own lawn/do our own yardwork
7)Have a backyard garden
8) Don't have a house that we can't afford
9) Pick the garbage of other folks that don't want a perfectly good picnic table etc.
10) Get books out from the public library(I buy very few books this way)
11) I give haircuts to my son and husband with a haircut kit, and my husband cuts my hair and my daughters hair(he just trims the bottom straight across nothing fancy just takes off the split ends)

I will add more as I think of them....


I go back to the accupunturist on Saturday. I didn't get to write about my last visit...the NAET doctor "cleared" my Vitamin D allergy. The day after she clears an allergy you are to avoid that food/vitamin in the food and other foods that have like energy for 25 hours. I will ask her to retest this week when I go but she said she had cleared the allergy by the end of the last session.

This Saturday she is going to clear my vitamin B allergy. I have been taking the B vitamins that my new doctor prescribed and they seems to be doing OK(less heart palpitations/more energy), but hopefully I will get even better with them after the next session. I also need to take VitD3 (I am sun sensitive with the Lupus and will get sores on my skin if I am in the sun too long) and I take magnesium and calcium too.

Technical Difficulties...

I hadn't posted in a little while because my stepmom just passed away. My dad died a little more than 2 months ago also(my real mom passed away when I was 15years old). Well suffice it to say that I realize that stress DOES play a part in my Lupus symptoms. I had been going along just fine, feeling pretty darn good, then my mom passed away and all the staying out late with relatives, the restaurants(even though I didn't eat anything at them), the funeral, wake and burial did cause me to have worse symptoms again. I experienced severe migraine headaches, shoulder pain, neck and shoulder joint pain just as if I had eaten something that I was allergic to.
I kept my diet exactly the same so I wouldn't throw anything off...

I had my husband bring my daughter to camp today so I could relax and sleep in a bit and I am starting to feel better.

What has had me feeling so positive is that, if by accident I feel a little off and ate something that doesn't agree with me, I would just eat veggies/salads and drink water and /or homemade veggie/fruit juices and feel better within a half of a day(about 4-5 hours) my system would clear out the "undesireable food" and the joint pain and /or headache would begin lifting.

It didn't work this time under stress! GRRRRR! Well we live and learn.