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Lulu's autoimmune diary


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I have so many diagnoses that I am not sure I remember them all at the same time. They are:

Post-viral syndrome (had reactivated EBV 7 years ago and have extremely high levels of HHV6 now)

Fibromyalgia 3 years

Chronic migraines 3 years

Interstitial cystitis 8 years

Sjogren's syndrome 1 year

Reynaud's syndrome 4 years

Sleeping disorder - doctor can't quite give me a name for it. I cannot fall asleep, when I do, I wake regularly, often don't sleep more than 4-5 hours total.

I am going to keep track of my food and symptoms to see what the connections might be.

Today is day 13. I had trouble falling asleep (it was 12:30 I think), but I slept well until 7:15. A big improvement for me.

Felt terrible when I woke up. Feet hurt, hips hurt so much they woke me up, and head hurt. Two cups of coffee (with coconut oil) and pain reliever and a couple hours later I felt much better.

Breakfast was leftover grassfed pot roast with carrots and rutabagas with two eggs on top. Two tablespoons of Carlson's fish oil.

Drank coconut water for electrolytes in the afternoon.

Dinner was chicken soup with kale and carrots and sweet potato fries roasted in coconut oil and ghee. They tasted like candy - almost too sweet.

My heart rate went very high after dinner. Maybe the carbs in the sweet potatoes?

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Day 14: Did not sleep as much last night. However, got a blue light box yesterday and used it for 30 minutes this morning. I am interested to see if it helps.

Today: 1 tsp mct oil whipped in my coffee, 2 TBS fish oil, spaghetti squash with green curry shrimp with peppers, mango. It also has green beans in it but I didn't eat them to see if that was the source of terrible aching pain the last time I ate it. I was really not hungry and had to eat slowly and sort of force myself to finish. No idea what that is about.

Lunch was leftover sweet potato fries. I could not make myself eat more. And coconut water for electrolytes.

Dinner was chicken soup with carrots and kale and macadamia nuts. I was going to eat 1/2 cup and could not eat more than a half.

Also got magnesium oil yesterday and am using that along with the Calm stuff.

My upper right abdomen felt pressured all day. No idea why. It doesn't hurt when I press on it but it feels very tight near my right ribs, as if something is pressing against it.

Overall, I did not feel good yesterday. My eyes were bothering me (Sjogrens) and I just did not feel good.

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Woke up this morning feeling rested and hungry. Nice. Realized that although I felt pretty bad yesterday, I did not take any pain medication. Can't remember the last time that happened. Nice. My nose feels as clear as if I just did a nettie pot. Nice.

Eyes still pretty bad and that pressure in my abdomen still there.

Breakfast was two huge bowls of chicken soup with carrots and kale. 2 TBS fish oil. Coffee with coconut and mct oil.

I have decided to try the AIP. Why wait? I can live without eggs and nuts. As long as coconut is not considered a nut. If so, I will wait another 13 days!

Cardiologist said to up my salt intake and electrolyte intake to slow down my heart rate. He upped my beta blocker and I took it yesterday because I am exhausted with my heart regularly racing at 160 bpm while I am doing nothing at all. I am drinking coconut water and taking natural calm. A compliant electrolyte supplement should arrive from Amazon today. Just haven't had time to make bone broth.

Due to insane circumstances, I did not get home to eat yesterday until 11 pm. Luckily I had eaten a monster breakfast. I ate some macademias, coconut butter and a banana and went straight to bed. I was dead tired.

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Day 16:

Did not get much sleep last night - circumstantial more than anything. Feel pretty good, considering. This is the second day in a row that I have not had to reach for pain meds when I wake up. Nice.

Had to go to eye doctor for extreme pain in one eye. Extremely dry and inflamed, so I am on anti-inflammatory drops.

Breakfast: sardines, cucumber kimchi, Progreens in water, coffee with coconut oil

Dinner: a lot of Nom Nom's Green sliders, which everyone loved, and two huge helpings of collard greens

I know I should be aiming for 3 meals, but I keep eating breakfast late because I am not that hungry.

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Day 17: Slept 6 hours. Woke with terrible hip pain.

Breakfast: Coffee with coconut oil and coconut cream, whipped. First time trying coconut cream in my coffee. Oh. My. Goodness.

Lunch: Nom nom green sliders with avocado and salsa verde in romaine leaves. Cucumber kimchi. Absolutely scrumptious. 2 TBS fish oil.

Dinner: A banana, coconut butter and coconut water.

I know that "dinner" was not optimal, but I felt sooo sick and in pain, I could hardly eat anything. I barely got that stuff down. The smell of food made me feel sick. The eye infection got much worse by evening as well.

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Breakfast: Coffee with coconut oil and coconut cream, whipped. First time trying coconut cream in my coffee. Oh. My. Goodness.

Ha! I did the same thing :)

I found myself not being hungry (eso morning), but eating the 3 meals anyway was a BIG help in the long run. The next whole30 I do I am focusing on the meal template because I think it will make an even bigger positive impact on my relationship with food. Good Luck!

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Ha! I did the same thing :)

I found myself not being hungry (eso morning), but eating the 3 meals anyway was a BIG help in the long run. The next whole30 I do I am focusing on the meal template because I think it will make an even bigger positive impact on my relationship with food. Good Luck!

Coconut cream lovers unite! I am going to work on the meal template starting today. Yesterday ended with me feeling a bit wretched but I feel much better this morning.

Remembered to use light box this morning.

Breakfast: Coffee with coconut cream, 2 TBS fish oil

Lunch: Huge kale salad with apple, avocado, and mct oil and vinegar dressing, and leftover grass fed pot roast.

Dinner: sardines and sweet potato with coconut oil

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Day 19

Woke with very bad hip pain. Still, once I get going, I feel so much better in the mornings. I love it. Sinuses are clear, head feels clear. I have energy even if I have only had 6 hours of sleep. I love not looking at the scale! I feel better about my body - today I woke up and my belly is flatter.

Breakfast: coffee with coconut cream, 2 TBS fish oil, can of sardines, kale salad.

Dinner: Two bowls of homemade massaman curry with coconut cream, chicken, carrots, broccoli, lime leaves, onions, apples and shittakes. Realized after I ate it that it has both peppers and coriander seed - so much for my AIP.

Beet juice with Natural calm before bed.

Took a walk - generally felt better today, with more energy and no pain until the evening.

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Day 20: Woke up very early to go to the city with my daughter. I had a long full day and had pretty constant energy and controlled pain.

Breakfast: coffee with coconut cream (3 cups instead of my normal 2 because it was so early), 2 TBS fish oil

Lunch: Huge salad with cucumbers and green beans and sardines.

Dinner: 2 bowls of the leftover Masaman curry

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Day 21: Another day of getting up super early, this time to go to Atlanta for a doctor's appointment. I finally got to tell her that I was actually doing W30 and that today was day 21. She was very pleased. And encouraged the nurse to try it too. I love this woman. :) Because I had to do blood work, no breakfast, just black coffee.

When we got home I at a big container of Masaman curry. I will be very sad to see this batch go. It has been delicious and perfect when I am hungry and don't want to cook.

Dinner was roast chicken with olives and apples, kale salad, and sweet potato with coconut oil.

Finished the evening off with my fish oil, bleh, which I forgot to take this morning. I am having a harder time taking it for some reason. I have been taking it every day for a year. Maybe I need to find a new kind.

I took my son to shop for valentine stuff for school this evening. We got plenty of chocolate and I am not tempted at all. The night before my husband brought home leftoever pizza from a great local place for my son (it had been served at a meeting). That was the only temptation I have really felt since I started this. I let it go. I am going to focus on non-food valentines this year. I think I am getting all my kids books and I haven't figured out my husband yet. But it's not going to be food.

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Had 7+ hours sleep last night and woke feeling good. Wow! I just can't get over this. I also, for the first time in a while, woke hungry. No pain, after two very full days of lots of activity. For the first time in several years, I feel hopeful about my health.

Breakfast: coffee with coconut cream, 2 TBS fish oil, homemade pickled eggs and beets. I love pickled anything, and these looked good and tasted great, although I think I may have used a tad too much vinegar. I doubt anyone would like this except me.

Lunch was a big bowl of the curry and two slices of bacon. I have not felt much like eating bacon for days now. What is going on here? Anyway, was overly full for the first part of the afternoon.

Took a 2.5 mile walk this evening. My activity/energy level is definitely higher overall.

Dinner was a final bowl of curry and a grapefruit. My hunger was all over the place today.

My Elete electrolyte tablets came yesterday and I am going to try taking one or two a day to see if it helps with my heart.

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Day 23: Woke early and had Valentines Day coffee with my husband. I gave him a copy of It Starts With Food to celebrate. I am hoping he stays with me as we approach 30 days. We both have a lot to learn. :)

Breakfast: coffee with coconut cream and 2TBS fish oil

Lunch: Beef vegetable soup.

This afternoon I tried out my new food dehydrator. I love it! I took a pound of fresh red kale and dried it in 2 hours with olive oil, vinegar and salt. Delicious. Everyone loved it. Tomorrow I am going to try jerky. Can't wait till summer when more veggies are in season. I wonder if collard chips would work?

Dinner: chocolate chilli (my husband loved it!), avocado and lots of kale chips. I oversalted them. Great for my heart and blood pressure but I will go much easier in the future. Also a pink grapefruit.

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Day 24: Was it all the kale? I don't know but I woke feeling well rested and quite good this morning. No significant pain. I have lots to do today so the energy is great.

Breakfast: Two cups of coffee with coconut cream and 2TBS fish oil, 2 hard boiled eggs and pickled beets.

Lunch: 2 bowls of veggie soup w/beef

Dinner: pan-fried tilapia w/ almond flour, herbs and ried kale again. My second batch was way less salty and I added a bit of garlic powder. I can eat tons of kale this way. I feel like Popeye.

Had major leg and hip pain last night and it woke me up this morning. Was it the almond flour? However, despite the pain, after I took the magnesium, I could not keep my eyes open and fell asleep before my husband, which hasn't happened in a hundred years. I actually went to bed and fell asleep! Ah, the simple things.

Also, while I was making the fish last night, I made mayonnaise with MCT oil and my stick blender. It came out gorgeous. I don't even like mayonnaise, but I have leftover chicken, and thought I might make lettuce wraps with chicken salad.

I gotta say, after reading all the stuff about the horse meat in the ground beef, I am very glad I am getting all of ours locally or grass fed Trader Joes. Horsies! :blink:

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Day 25: This was one of the busiest days I've had in months? Years? We went to a workshop from 10-2:30, took daughter shopping, grabbed dinner at home, and went to a movie. I was on the move from 9-9. Unheard of in recent years. :)

Breakfast: 2 hardboiled eggs, pickled beets, coffee w/MCT oil

Felt somewhat sick in middle of day

Dinner: tilapia and kale

Didn't take fish oil until late

At the end of the day, I did not feel good. My eyes were in pain and all over body aches. I drank some tea, used eye drops, drank Natural Calm and fell asleep. Woke at 4 feeling like hell, but managed to go back to sleep until 8. There was almond flour on the fish, so I am now wondering if I actually do have a problem with nuts. Darn it! I am staying away from them for the time being. Maybe in 5 days, I'll go cold turkey.

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Day 26: We went for a 2.5 mile walk this morning.

Breakfast was a can of sardines and an avocado with sea salt, coffee with mct oil - sadly out of coconut cream

Lunch was homemade beef jerky! I made it and it came out great. I can't wait to experiment with different marinades. The really thin slices can be used with salsa or dips. My son snacked on this all afternoon and I felt good about it. It's good stuff!

Dinner was shrimp burgers, made with wildcaught shrimp that was on a great sale ($6/lb). I used this recipe: http://food52.com/recipes/12130-shrimp-burgers-with-roasted-garlic-orange-aioli and made my own version of the aoili with mct oil and lots of herbs from the garden. Put it on a big salad. Divine. Ate half an orange for dessert. I had used the other half in the aioli.

Oh and the 2TBS fish oil.

At the end of the day, I felt like I overdid it. It's been a pattern of late. It is very nice to be able to overdo it and only feel like I got my ass kicked at the end of the day. But I need to be careful. Strange eye thing is still there.

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Day 27: I woke up at 6, feeling so good I couldn't figure out what was going on at first (need the coffee for coherent thought). I cannot describe how good it feels to feel good. Wow, am I grateful. The sun is out today and that helps too. My son is home from school and we spent the morning painting. I love to play with my kids and I haven't felt well enough to do it very much in a looooong time.

Breakfast: leftover shrimp burger, mess o' collard greens. Coffee with mct oil, and the dreaded fish oil. I am working my way through an orange flavored bottle. The lemon is fine but this orange...I will be very happy when I am done with it.

Was not hungry for lunch.

Dinner: Finished the shrimp burgers and an even bigger mess of collard greens. And a pink grapefruit, and a biggish handful of macadamia nuts. I have to fast for a doctor's appointment in the morning, so wanted to be very satiated.

Walked 2.5 miles at the end of the day. My back was killing me but it just feels so good to be able to be active again.

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Could not drink coffee before an ultrasound appointment this morning. It was raining and cold. Getting out of bed without coffee? The horror! The horror! Came home and happily lapped up my coffee and mct oil and drank the dreaded fish oil. Just placed an order for lemon-flavored. I know I can handle that. Also found coconut amminos for $6 ish a bottle, so ordered a couple of bottles of that for a new taste treat.

Today I am making fish soup with homemade shrimp stock, using this recipe minus the wine: http://www.simplyrec...dads_fish_stew/ and chicken soup with homemade chicken stock. Also roasting beets and their greens together. And making kale chips. I feel like Little House on the Prairie. With lots of nice tools, like a blender, slow cooker, and dehydrator.

My abdomen has hurt increasingly all day. To the point that I have had no appetite. I ate some kale chips tonight, to have something in my stomach in order to take medicine. Should have the results from the ultrasound tomorrow. On the plus side, I got a lot of cooking done. I am not feeling bad otherwise. But the pain is interfering with my focus.

I did end up eating some homemade beef jerky with guacamole (avocado mushed with compliant salsa) before I fell asleep. I hadn't eaten that late in a long time, but I needed food and cold stuff was good.

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Day 29: Took a while to fall asleep but still am popping up at 6:30, feeling pretty good. The pain in my side is much better this morning and I should hear back from the doctor about the ultrasound today.

Meal 1: Coffee with mct oil, sardines and roasted broccoli and the fish oil. Counting down the days until this orange stuff is gone. Tracking the lemon stuff that left the iherb warehouse yesterday.

Among other things today, I will be brushing up on the AIP protocol which I will strictly begin the day after tomorrow.

Meal 2: Two huge bowls of the fish chowder I made the other day. I added a lot more veggies to the recipe (1 lb carrots, baby bellas, lots of parsley from the garden. It was outstanding and soothing later in the day when my abdomen began to really hurt again.

Still no word from the doctor about the ultrasound, so I assume no news is good news. My chiropractor did some gall bladder work and it doesn't hurt at all this morning.

I was out with friends until 10:30 last night. The last time that happened? At least 3 years ago. Probably 4. We were playing cards (bridge) and I brought a thermos of herbal tea and was happy as a clam. When they heard I had been making kale chips, several folks asked me to bring them next time! Wasn't expecting that. Another asked me to bring fresh collards for him to try - he said he loved them so. We were talking about our gardens, not food.

Took me a while to fall asleep after all that but I feel like I am healthier than I have been in such a long time.

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Lulu, it's fun to read over your blog and see how much better you're feeling than when you started. Congratulations on the great work! And hey! Tomorrow is your day 30!

Thanks so much martihana! I am very grateful I have made it thirty days (at the end of today) and wow, the changes are pretty amazing. I was skeptical but there is no arguing with this.

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Day 30: Wow, it's really nice to make it to day 30. I thought it was hype, but it isn't. My health has dramatically improved and my relationship with food is healthier than it has been in 19 years. How so? 25 years ago I had just graduated from college and went into a treatment center for an eating disorder. I had been bulimic and anorexic since I was 12 or 13. I was there for 30 days and during that time I learned not to count calories, to eat three meals, to avoid "liquid hugs", as my nutritionist called sweet beverages, diet or otherwise, not to weigh myself, to stop being a vegetarian, and to avoid sugar. I did aftercare for a year and during that time, these principals really took root and for 5 years I had a fantastic relationship with food. I ate meals, I did not weigh myself, I avoided sugar. I was healthy and happy with my body. When I got pregnant with my first child, things changed. Food aversions and a focus on pregnancy books (I'm looking at you, What to Expect When You're Expecting) and I began to worry about my weight and exactly what I was eating. I also began to eat sugar again. I would give sugar up for a short time and then dive back in. Also health food store junkfood became a problem. I never had a healthy relationship with food again.

When I started W30, I was hoping for relief from my medical problems. I had long ago forgotten the freedom I had of eating when I was hungry, stopping when I was full and not being obsessed at some level with food. I know what that feels like again. I am 46 and I hope I will experience this freedom for a long time.

I read Dallas and Melissa's blog "You Count More than Your Calories Do" yesterday and it really hit home. I have been logging my food into PaleoTrack to be sure that I am truly Paleo. As time has gone on, I have been forgetting to to it. I am consciously stopping it today. It was helpful at first because it helped me catch non-compliant ingredients sometimes that I would not have thought of. However, I am pretty educated now and I think it is doing more harm than good. When I had a truly healthy relationship with food, I was not worrying about numbers of any kind.

Meal 1: Chicken veggie soup- homemade chicken stock makes all the difference! With carrots, celery and onions. Coffee with mct oil. Fish oil. Trying to eat more when my abdomen isn't hurting.

Meal 2: Fish soup, roasted broccoli, beef jerky

Meal 3: More fish soup, sweet potato fries

Took a 2.5 mile walk - gorgeous day. And tried kombucha.

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So this is day one of AIP for me, although I think I have been doing it for several days, but not paying super close attention, so today is the day. Not worried so far.

Last night as we were leaving the farmer's coop, a guy had a kombucha stand set up. He is making it with organic fruit mash instead of sugar! He had little cups to sample it. I thought it tasted like straight vinegar and my son thought it tasted like fizzy lemonade. My husband thought it tasted like cider. The young man said that how it tastes depends on how off-balance or sick you are. Hmmm. He didn't tell us that until after we had reported what we thought it tasted like.

I wasn't planning to try kombucha anytime soon, but this was so serendipitous that we bought 4 big bottles. My son couldn't wait to drink more. We had a bit more when we got home and I still think it tastes like vinegar. But I did not have a bad reaction to it so far, so will continue the experiment. I assume it is okay on the AIP?

Today is cold and rainy and I have a ton of food to prepare. A huge round roast, bone broth, and numerous veggies are on today's agenda.

Forgot to mention that I had a scale slip yesterday. I had decided I was not going to get on the scale again. I really want to focus on how I feel rather than how I compare (to what?). At any rate, I had decided to take my measurements, which I have never done before but did before starting this. I don't know what I was expecting. My clothes fit way better. I feel better. According to the tape measure, I lost one inch total - an eighth of an inch here and a fourth of an inch there. I feel so much better I could hardly believe there was no measurable difference. So I jumped right on the scale. I've lost a little over 10 pounds.

I feel a bit ashamed that I succumbed. That is when I took the scale, which my husband does not want to throw away, and put it in another bathroom that I never use. I will not lie- the 10 pounds gave me a charge. Woo-hoo! But that is just not a healthy part of me. So I am committing again to no scales.

Meal 1: chicken veggie soup

Meal 2: Finished off the seafood veggie soup

Meal 3: Roast beef and sweet potato fries, made with purple and orange potatoes. I ate too many. When I eat too many carbs (I think that's what it is), my heart rate goes high. Mine was about 145 when I finished dinner. I had not eaten that much sugar in quite a while.

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