AIP Breakfast and “Ham with Jam”

Feeling soooo much better today! Yayyyyyyy!!!!! Mouth still has lots of healing to do, and I have to be careful if someone makes me smile or laugh, because this lesion on my lip is no joke and has cracked painfully and bled on several occasions. I have an extremely funny husband and daughter, so while I am still delighted by their humor, it comes with what feels like a punch in the mouth. But it’s worth it. Laughter is healing.

I’m eating lots of solid foods today!!! Yum! And dipping my toes into the AIP (Autoimmune Paleo Protocol). Made beef breakfast patties and kale chips today.

Served ’em with avocado, clementines, and a pickle spear (at my daughter’s request). The pickle was marinated with carrots and red peppers, so technically is not compliant with AIP (because of the nightshades- peppers) but I’m moving into this protocol slowly.

Here’s what went into the breakfast patties. The herbs are from the garden. Parsley, rosemary, and sage.

I over cooked them a bit, but they still came out good. This meal took me FOREVER to eat, since every bite feels like a mini-marathon. But it was delicious, and the lesions have healed enough at this point that it is possible, if laborious, to eat, so I’m taking full advantage.

My daughter and I have been reading a book called “Ham with Jam” most nights before bed. It’s a free app from ABCmouse, and is so nice to have (along with all their other book-apps) when I’m sick and can barely talk, much less read a bedtime story. Each book has a “read to me” option, so a narrator reads the book for us. We still get our nighttime reading ritual, even when I’m too sick to do it myself. Anyway, this “Ham with Jam” book is about a little girl who likes jam, but detests ham, and a little boy who enjoys ham, but doesn’t like jam. They come up with the genius idea of putting the two together and it’s so delicious that both kids change their minds and end up liking both foods. It sounded pretty good, so I decided to try a healthier version of it.

Rinsed and diced the strawberries, then mixed them with a teaspoon of honey and rolled them up in a slice of Applegate ham. The sweet/salty combination is delish!

And I’ll have to double check the ingredients in the ham, but I’m pretty sure it’s AIP friendly.

My sweet husband picked up some coconut water for me yesterday, so I drank a lot of that and felt really hydrated. Continuing with that today, and I’ve been focusing on getting to bed by 10pm. I’m rarely (never) asleep by 10, but getting to bed earlier is becoming easier. Hopefully I can soon adjust my internal clock enough to not only be in bed by 10, but be fully asleep by 10. I think this will be easier to do as the days continue to get shorter and shorter. This timing of sleep-hours is vital to adrenal function, so as I taper off the last few mg of this steroid, giving my adrenals every fighting chance will be really important. And it makes a big difference in how I feel throughout the day (and how quickly I heal from flares).

Fried Bananas and Belly Bloat

Still struggling, but seem to have hit a plateau. I don’t think this flare will get any worse. Now it’s just a matter of being patient and waiting it out. Today was day 3 on the couch. Mentally feeling a little stir-crazy, but physically, I just don’t want to move. I did get up at one point to clean up the kitchen a bit, and to make these…

Chai Fried Bananas

It’s 2 bananas fried in a tablespoon of salted ghee and sprinkled with cinnamon, ginger, cardamom, and clove. These are such a yummy treat. Makes a fantastic dessert. And no need for additional sweeteners whatsoever. The bananas caramelize and each bite is like cracking into creme brûlée. When it hurts so much to eat, I really need something that is so delicious that I’ll endure the pain. This did the trick. I ate all but 6 or 7 pieces. That was the only solid food I had today. But staying nourished with smoothies and warmed, spiced coconut milk. Felt like I had a hard time staying hydrated today. It just hurts and is so tiring to keep drinking water. And I make a mess because it dribbles out around my swollen lip. Would’ve loved some coconut water. I always feel so hydrated after drinking that stuff.

Ok, so, when I took these pictures I had no intention of posting them anywhere. It was purely for my own information. But the change has been so drastic, and this is a big part of how I’m gauging what foods are inflammatory for me or not. I’ve talked before about how much my bloated, distended stomach was reduced after eliminating grains. I wish a had a “before eliminating grains” picture, because that was where the most noticeable difference happened. I easily looked four months pregnant (and I showed a LOT at four months!). But here are 2 pictures of my stomach 3 weeks after eliminating grains.

I’d say I was down to about 2 months pregnant-looking in those pictures. And my stomach stayed that way for several weeks. Then, during this recent flare, it shrunk even more. Flares sometimes end up being sort of forced detox periods for me (as long as I can avoid pain meds). But even during flares, I typically eat eggs. It’s a soft, slippery, easy to swallow food that works when my mouth is all jacked up. We just happened to be out of eggs this week, and I was too sick to go shopping, so we were eating (or in my case, mostly drinking) other things. I think this further shrinkage may be due to the inadvertent elimination of eggs. Though I’ve eliminated and reintroduced them before with no noticeable reaction, if I was consuming other inflammatory foods at the same time, it’s unlikely that I would’ve noticed. Anyway, here’s my belly pics from this morning (five weeks after eliminating grains, two weeks after the previous pictures… I swear I’m not sucking in and I have not done a single core exercise in, oh, about 6 months).

My stomach is almost as flat as my husband’s now- and he’s a very lean guy. I think there still may be a very slight bit of lingering inflammation, but it is greatly reduced. So I should be able to notice as soon as it returns and identify the offending foods. Since I have no other digestive issues (thankfully) this is the best way for me to recognize what foods are messing with my digestion and causing the autoimmune reactions throughout my body.

I’ve said this before, but I want to reiterate… I’ve looked 4 months pregnant for the past 3 years (ever since the birth of my daughter). Even when I lost a huge amount of weight (and was down to 116 lbs, at 5’7″ and with my build, that’s way too skinny) I still had the baby belly. I knew it wasn’t an issue of fat, but I figured it had something to do with my stomach muscles not being the same after being so stretched out during pregnancy (I was REALLY huge- like abnormally huge- strangers often thought I was having twins). I thought I just needed to work on my core strength and build those muscles back up. Then, when I had a crisis situation back in June and had to get a high dose (80 mg) steroid injection on top of doubling my usual prednisone dosage to 40 mg per day, my stomach suddenly shrunk (even flatter than it is now- it was practically concave). Once that happened, I knew instinctively that the belly was caused by some sort of severe inflammation in my digestive system. My doctor (nice guy, saved my life in the hospital, but clueless about my disease and digestive health) said the steroid injection would not have caused my stomach to go flat. He suggested that perhaps I had had a large bowel movement. Lol. I was like, “Ummmmm, no. I’ve had this belly for 3 years. I don’t think it has anything to do with bowel movements.” The four-month baby belly returned within a week, but I knew finding how to reduce that inflammation through my diet would be key to my long term healing process.

So, even though at this point I am still very sick, I find encouragement in this progress. I WILL get there. I WILL be well. Eventually. 🙂

Pondering AIP (Autoimmune Paleo) Protocol

I felt so good last week, I really thought I’d turned a corner and the rest of the taper would be easy. Yeah- not so much. Dropped to 2 mg on Sunday, so today is day 3. I have a huge lesion on my tongue and several smaller ones throughout my mouth. Plus 3 medium sized ones on my lips. Lots of thrush, but thankfully, my tongue is not as swollen as it would usually be with a lesion this size. Since it doesn’t restrict my chewing too much, I have been able to get in a little bit of solid food each day. Yesterday, I drank a big mug of chicken bone broth, several smoothies (with spinach, bananas, strawberries, and Garden of Life meal replacements), and a small bowl of leftover meatloaf and mashed cauliflower. Kind of have a constant empty feeling in my stomach, but I know I’m staying hydrated and getting decent nutrition. I’ve had several stubborn headaches lately, too. And I’m out of my Young Living PanAway essential oil, so I’ve been subbing with a cheaper brand of wintergreen, helichrysum, and peppermint. And drinking lots of water. And taking long, hot Epsom salt baths. So far, I’ve made it through without caving and taking ibuprofen. But it has not been comfortable.

My husband stayed home from work this week to take care of our daughter (and me) since I’ve rarely left the couch in the past 2 days. Watching lots of Netflix and keeping myself distracted from the pain. As long as I’m not talking, eating, drinking, or swallowing, I can almost forget what’s going on in my mouth. But I’m also extremely tired, dozing off while watching TV and sleeping a lot of the day. I am achy and feel slightly feverish. My skin is super-sensitive, so little things hurt more than they should. And if I go a long time without opening my mouth, it gets stuck together. Especially when I wake up from sleeping, but it can happen when I just haven’t opened my mouth for a while. Isn’t that disgusting? I have to wet my lips with water from the sink and slowly pry them open. I watched a zombie movie the other day (World War Z-great movie), and it dawned on me that my mouth is totally zombified when I’m flaring, chunks of rotting flesh and all. So gross.

There are a few things in my diet that I think could still be causing systemic inflammation. For one, since I eliminated grains, I started eating a lot more nuts- mostly cashews and almonds. And I usually don’t soak them first. Nuts and seeds have something in them that makes them indigestible (anti-nutrients? or phytic acid?). When you soak them, it helps neutralize some of that… whatever… that makes them indigestible. Click here for an article that explains it way better than I just did. At any rate, if you have a leaky gut (which I most likely do, since I have an autoimmune disease) those indigestible particles can get through the gut lining and into the bloodstream, where they are recognized as foreign and attacked by immune cells- causing further confusion and malfunction of an already spastic immune system. So, I think I am going to need to eliminate nuts and seeds for a while. At least to let my gut heal a bit and then re-introduce them to see how I react.

Another food category I’m considering eliminating is nightshades (tomatoes, eggplant, peppers, and potatoes). All this time, I thought nightshade elimination was really only for people with autoimmune arthritis. But the more I read about the effects they have on digestion, the smarter I think it would be to at least do a test elimination.

The only major category left that would keep me from the Autoimmune Paleo Protocol (AIP) would be eggs. I’ve eliminated and reintroduced them before, but if I was eating other inflammatory foods at the time, I may not have noticed a reaction.

So, that’s my plan… to implement AIP in the near future. It’ll be the most restrictive I’ve been with my diet thus far, but there will be little chance of weight loss because I’ll still be getting lots of animal fats and proteins.

This e-cookbook will be my guide. It’s the Autoimmune Paleo Cookbook by Mickey Trescott. I’ve been following her blog for a while, and have found her and the Paleo Mom to be two of the best sources of information on the autoimmune protocol.

The plan is not to have to follow this diet forever. It may take a few months, or a few years. I don’t know. But the idea is to heal my gut so that when I do eat foods that formerly caused inflammation, my body will know what to do with them and they will not cause symptoms. Not that I will ever consume conventional dairy again, but I am really looking forward to the day I can have some organic coffee with grassfed raw cream and a piece of sprouted grain bread with raw cheese.

But even if that’s not a possibility for the rest of my life, I’ll be happy with whatever I CAN eat. And I’ll eat whatever will heal me. Cause health tastes way better than the best coffee, bread, and cheese.

Living Grain Free

I’m on day 6 of 4 mg on the prednisone taper. And this is the best I’ve felt since I began the taper 2 months ago. I’ve been feeling really good for a few days, but was afraid to talk about it too much- didn’t want to jinx it. I’ll be dropping to 2 mg on Sunday. I’m almost there! Almost done! Almost free!

Here’s some examples of what I’ve been eating lately. Grain-free isn’t nearly as tough as I thought it would be. As the Paleo Mom says, it’s only effort until it’s routine.

These are grass fed burgers on a lettuce bun with tomato, avocado, and mushrooms. With rutabaga fries. Seriously delicious.

Breakfast for the family: sautéed sweet potato and beet greens with garlic. Applegate naturals chicken and apple breakfast sausage, and sliced fruit- pluot, banana, and Granny Smith apple. This meal would almost fit within the guidelines of the autoimmune paleo protocol. The sausage is seasoned with spices that include pepper, and nightshades are restricted on the AIP, but it’s pretty close.

Loving my vitamix and it’s ability to turn large amounts of fruits and veggies into delicious smoothies! Here, I puréed a cucumber (not organic, so I peeled it before blending), a plum, a whole head of romaine, and a beet. I drank 2 big glasses, then blended what was leftover with a frozen banana for my 3 year old. Super sweet and she loved it.

Super salty lunch salad: 2 cups of baby spinach topped with Applegate naturals uncured salami, raw sauerkraut, and Sicilian style olives. It was tricky to find jarred olives without nasty additives. These have lactic acid and acetic acid (which I think is basically vinegar), but are otherwise just olives, water, and salt. Most of the jarred olives had preservatives, so this was the best option I could find.

This is now one of my all time favorite recipes. Nut-free, Coconut-free Paleo Muffins from the Paleo Mom. I doubled the batch, made 12 plain muffins, 12 blueberry muffins, and then made blueberry pancakes with what wouldn’t fit in the muffin tins. Everything came out perfect.

Quick lunch for me while my daughter’s at school: 2 grassfed beef uncured hot dogs with organic ketchup and mustard, olives, raw sauerkraut, and jarred organic shredded red beets.

I often send these in my daughter’s lunch. Great substitute for a ham sandwich. A grain free crepe from the Against all Grain cookbook, Applegate naturals uncured ham, and raw sauerkraut for a good dose of probiotics to help with digestion.

And when I eat them myself, I dip it in mustard, and pair it up with a pickle spear, olives, and shredded beets.

And, in case you missed it in previous posts, this bread recipe is part of what has made my transition to grain-free so easy. Crazy delicious.

A Bit of an Anti-Rx Rant

As I struggle to wean myself off of this medication (prednisone), I find the flippancy with which it’s often prescribed appalling. I know it saves lots of lives (possibly mine!) So I don’t ever want to diminish the life-saving value of pharmaceuticals. They really are amazingly effective in many situations. I just think they are grossly overused these days, and we are blindly popping pills with the assumption that they will heal our problem. When was the last time you went to the doctor for an ailment, and left without a prescription? That’s ALL they’ve got. That’s all they know to do to help you. And while all these medications are so important in certain cases, they also have some pretty crazy side effects and are toxic, particularly over time. Though my doctors prescribed prednisone within a year of my diagnosis, I didn’t take it and managed my symptoms with a steroid mouthwash (I was also breastfeeding at the time, so that was added motivation to tough it out without taking meds internally). As soon as my daughter was weaned (just shy of her 2nd birthday) I started taking colchrys (colchicine) and did well on that for a year. The plan was to stay on it for a year, then try to get off and see how I did without it. But just when that one-year mark rolled around, I ended up in the hospital with the craziest flare of my life. Enter prednisone (and lots of other medications- antibiotics, antifungals, antivirals, pain medications) that ultimately resolved the crisis and I’m pretty sure saved my life. So I thoroughly appreciate that. But if not for my own research and the support of an integrative doctor, the only option I had when I couldn’t get off prednisone was to start taking a steroid substitute, methotrexate, a chemo drug. Methotrexate has less severe long term side effects compared to prednisone, but it comes with it’s own set of drawbacks. And when I asked my doctor how long I’d need to take it, the answer was: the rest of my life. So, it’s not like this medicine would HEAL me, it would simply (hopefully) mask my symptoms enough for me to live a normal life. That just isn’t an acceptable solution at this point in my life. It’s not enough. I want to HEAL. I want to be WELL. I want to be HEALTHY from the inside out. I walked out of that doctor’s office and called the Center for Natural and Integrative Medicine from the parking lot. That was seven months ago.

Part of what prompted this post involves a realization I had reading a magazine recently. For the most part, I restrict my exposure to conventional thinking and have focused on media that supports a more natural, sustainable, organic lifestyle (whatever that means). I got a great deal on a subscription to a Martha Stewart publication called “Whole Living”- filled with whole foods recipes and detox plans and natural cleaning methods. I loved it. But for some reason, they stopped making the magazine and started sending me “Family Circle” as a replacement until my subscription runs out.

As I flipped through the magazine, I was amazed at the number of ads (eleven) for prescription medication or ads sponsored by pharmaceutical companies. For one, I don’t understand the point of advertising prescription drugs to the public. It’s not like we can just go and buy it. All the ad is telling us to do is “ask our doctor” about it. If this is the medication we should be taking, wouldn’t our doctor know about it?

The first Rx ad I see is for an asthma inhaler, then something that looks like a public service announcement for the shingles virus, then a vaginal cream for menopause, another PSA-type ad for lupus (thank you, GlaxoSmithKline), then an ADHD med, another asthma inhaler, then a med for osteoporosis (for all the people who spent too much time on prednisone!), another shingles vaccine ad, a nerve-calming med for fibromyalgia, and, finally, an ad about migraines (sponsored by Allergan, Inc. -NOT out of the goodness of their hearts). There’s also an article about acne that recommends oral antibiotics and Accutane for kids with “severe” acne. I took Accutane when I was 17/18, and my integrative doctor is pretty sure that’s where my digestive issues started. I wish someone had told me to eliminate dairy and do a juice cleanse. Much more effective, and I wouldn’t have had to deal with the painful dry skin, lips, and nasal passages, and the humiliation of going to the doc as a teen with my mother to get the required birth control (it causes really severe birth defects, so I was told I needed to be on birth control whether I was sexually active or not- just in case). My point is, despite what magazines or your dermatologist suggests, DON’T LET YOUR KIDS TAKE ACCUTANE (now known as isotretinoin). There are better ways to get good skin, and cosmetic issues are NOT worth such serious drawbacks.

I rarely watch regular television either, but the few times I have, I noticed a similar saturation of pharmaceutical ads. What is up with this? Are we sicker? (I think, yes.) Are there just more amazing drugs that we need to know about? Do our doctors not know enough about the medications that the pharmaceutical companies now want patients to specifically ask for these drugs? I don’t get it.

A few other things I noticed in the magazine that bothered me…

This ad, attempting to position McDonald’s as a restaurant that sources family farms for the potatoes for its fries. Ridiculous.

And this ad, equating a box of glutinous pasta with the nutrition in 35 leaves of Swiss chard, six ounces of walnuts, and 11 eggs.

Again, ridiculous.

And this…

Because if your kid eats this sugary, gluten-filled cereal, they just might grow up to be a doctor. Good thing. Because eating this stuff, we’re going to need a lot of them.

Bread-less Sandwiches and a Paleo Meal for Date Night

I’ve been feeling pretty good the last couple of days and I am so grateful for that. Still on the tail end of this cold (congested and sore throat, but very mild) and oral lesions are mild. So I’ve been able to expand on what I’ve been eating and add in some crunchy leaves (that are really difficult to eat when I’m having lots of issues with my mouth). Considering my recent switch to grain-free, being able to eat leaves is nice because I can wrap traditional sandwich fixings in a leaf and BAM- easy meal.

For example:

Grass fed uncured beef hotdogs with organic ketchup and mustard, and raw sauerkraut on a romaine lettuce leaf, with a side of crunchy carrots and hummus.

And breakfast this morning was egg “sandwiches”. Uncured ham and an egg fried in coconut oil, topped with avocado and a side of fruit (the purple thing is a pluot, the yellow is a “flavor grenade” pluot, and everybody knows what an orange looks like).

Some other notable (and mostly paleo) things I’ve been eating lately…

Sardines are supposed to be really healthy. Great way to get those omega 3’s we hear so much about, and lower in mercury than most other fish, particularly canned fish like tuna and salmon. Problem is, I don’t really like sardines. It seems weird that all their bones are in there, and they really need to be prepared in a way that complements their flavor. I’ve had them on crackers with a bit of mustard before, which was good. But crackers (even gf ones) aren’t an option for me anymore. So I found a recipe online for coconut crusted sardines. I love coconut shrimp, so I figured I’d try it. Rinsed the sardines, dredged them in an egg wash, then coated them with coconut and sautéed them in coconut oil. Dipped them in organic mustard. Not too bad.

And for our date night (at home, because I really can’t eat out very easily and this is cheaper anyway) we made (yes, my husband helped) the recipe for meatloaf muffins from my favorite cookbook, Against all Grain. Topped with some organic ketchup and mashed cauliflower. With a side of oven roasted asparagus. Very delicious and comforting meal. (I made a double batch, so we have lots of meatloaf muffins in the freezer for quick meals when we’re busy- or for when I’m sick).

And date night dessert was sliced pears, tossed in coconut oil and cinnamon, and roasted in the oven. Then topped with coconut cream (from the top of a refrigerated can of coconut milk- organic and BPA free) enhanced with a little local raw honey and vanilla extract. Soooo good.

This paleo thing is going to be fun. 🙂

Fantasizing about the end of prednisone…

Tapering off of prednisone SUCKS. I feel so unstable. Pretty much continuously on the verge of a serious flare (or actually having one, as evidenced by the 3 weeks I spent stuck at 10 mg). My original plan was to taper by 2 mg per week (I started at 20 mg). Everything was going relatively well until I hit 10 mg. I wanted to wait until I felt stable again to drop to the next level, but I’m not sure that would ever happen, and I’d likely just crash again at the new level, so I decided to go for it. I dropped to 8 mg yesterday, and so far so good. Still struggling with cold symptoms (sore throat, congestion, slightly feverish feeling) and a flare (of oral lesions) that I would classify as slightly worse than mild. But it’s all manageable. And I’m motivated to fight through it, thinking about the day I’ll be off this medication and my adrenals can start functioning properly on their own.

If I knew then (when I was diagnosed nearly 4 years ago) what I know now, I would have immediately eliminated grains from my diet. I learned early on that processed sugar exacerbated my symptoms, but it took a long time before I got rid of gluten (and it took nearly 4 years to drop grains), and I’m still struggling to eliminate dairy (had a few servings of goat milk this week and the acne to go along with it- not that I care that much about the aesthetic issue- it’s just a sign that my body isn’t processing it well). I saw a post on Facebook to the effect of: I never make the same mistake twice; I make it at least seven or eight times just to be sure. That’s me with dairy. When will I learn? I’m really happy with the grain elimination, though. My distended stomach (bloating) is significantly reduced, and I think dropping dairy completely and further minimizing sugars (honey, agave, dates) will help even more. And whatever is causing the inflammation in my stomach is likely the root cause of the autoimmune reactions that are happening.

As soon as I get off of prednisone, I intend to do a thorough cleanse. Not sure what form it will take (likely part juice cleanse, part SCD (specific carbohydrate diet) intro cleanse). I’m so excited for a fresh start without meds. And this is what I’m focused on. This is what keeps me motivated through these rough days. The idea that I can experience true health again. Without meds. Without constant fear that a little extra stress is going to send me spiraling into a debilitating flare. Without fear that if I eat something wrong, it’ll make me severely sick. Right now, that’s all a fantasy. But I WILL get there. And soon.