The Week of Rebellion

Well, I got frustrated with the fact that I got seriously sick again after 6 months of nearly perfect eating (as far as I understand nutrition) and total focus on consistent supplementation and funneling all of our resources Into my health and recovery. I was pissed. What was I doing wrong? And what’s the point of working so hard and sacrificing so much (especially financially) if nothing has changed.

In an act of rebellion, I relaxed (slightly) on my diet. I drank coffee for the first time since I left the hospital in January. I’m pretty sure I actually got high on that first cup. Had a small cup with raw goat milk or cow cream and raw organic honey for the next 4 days (except the one day I had coffee at a friends house and used flavored creamer (gasp!)). Anyway, after a few days I started noticing how jittery I felt. And there was a moment in the grocery store when I felt like my blood sugar suddenly plummeted and left me shaky and starving and panicky- leading me to scarf down a whole package of goat cheese in the car before driving home. I remember that kind of thing happening regularly in the past, but I’d forgotten about it, because it hasn’t happened in the past 6 months. Conclusion? Coffee is not right for me. At least not caffeinated. Lesson learned.

In my rebellion, I also ate whatever I wanted at play dates and parties that week. Gluten? Yum. Dairy? Yum. Sugar? Yum. GMO? Yum. Why deprive myself at social functions if I keep getting sick anyway? Yeah, well. There was a consequence for that.

For women who take a lot of prednisone, yeast infections are very common because decreased immunity creates a prime environment for the fungus to thrive. Apparently, my healthy, low sugar diet was protecting me from this terribly uncomfortable side effect, because after my week of rebellion, I have a raging one. I’ve had issues with oral thrush along the way, but haven’t had any problems “down there” until now. And lemme tell ya- this discomfort is not worth those sugary (albeit delicious) desserts. It’s just not.

I didn’t deviate much from my usual plan at home (aside from 2 bowls of sugary cereal- only in the house as a treat for my daughter), but I did try incorporating some raw dairy into my diet. Got a little congested (I’ve noticed that before in response to dairy) and got lots of cystic acne in my T-zone. All around my mouth and nose and between my eyebrows. I haven’t had acne like this since college. Not sure if it’s a reaction to the stress of everything, the dairy, or the toxins in all the cheat foods I was eating- or a combination of all of that. I hadn’t realized how good my skin had actually gotten, so that’s additional motivation to keep me on track with my nutrition efforts.

Coming off my week of rebellion kinda feels like coming home from a crazy drunken spring break or Mardi Gras. It was fun, but I’m still suffering the consequences. And I never want to do it again.

Not everything that I ate was horrible. Here’s some pics of some good things. Sorry- no evidence of the bad stuff.

Ingredients for amazing chicken salad. Including my homemade mayo- emulsified in my new vitamix! Yay!

Chicken salad sandwich on a gluten-free bun with fermented veggies on the side.

Ingredients for organic roasted chicken with garlic and rosemary. In the bowl: crushed garlic, chopped rosemary, salt, pepper, and ghee.

Once they cooled, I tore all the meat from the bones (keeping it in the fridge for more chicken salad) and then put the carcasses in the crock pot with lots of water, herbs, celery, carrots, a splash of apple cider vinegar and salt, and let it go for 24 hours. The bone broth is supposed to be very healing for the gut. I’ve been drinking it most mornings since giving up coffee (again).

This green smoothie tastes like a vanilla milk shake. No joke. Frozen banana, ice, full fat coconut milk, tons of spinach, a few dates, vanilla extract, maca powder, and a few drops of stevia. So, so, so delicious.

Hello, again.

It’s been nearly a week since my last post. And that’s after posting daily for almost 5 months. I apologize for dropping off the face of the blog-earth. Here’s what’s been going on.

My father suffered a stroke on Sunday. He’s improving, but has been in ICU all week.

I met with my integrative doc on Monday to discuss tapering off of prednisone. He said now is not the time, being in the midst of a stressful family situation. He said to call him when things settle down and I could start tapering by 2mg per week.

Then yesterday (Thursday) I started feeling like my throat was closing up on me. Got really hard to swallow anything and I had a fever (103) during the night. Saw my family doc this morning, who gave me a steroid injection and told me to double up on my prednisone dosage for the next week. I’m also taking a liquid antibiotic. I have to go back in to see him tomorrow if the fever doesn’t go away. At this point, just trying to stay out of the ER. We can NOT afford that.

In the past week, aside from a small scoop of hospital potato salad (which I don’t know what was in it), I’ve stuck to my eating plan, thanks to family and friends who know what I’m supposed to eat and have helped provide me with that.

Quick photo of something my good friend (a trained chef who develops recipes for magazines!) whipped up from random ingredients in my kitchen. Gluten free noodles, über delicious sauce, and a bit of goat cheese on top.

Now, though, I’m basically on organic chicken broth and hot tea with honey. It takes all day to drink 8 ounces because it’s so painful and causes me to choke. And until this passes, I won’t be able to be there for my mom and dad while he’s in the hospital.

I’m so disappointed and confused at this turn of events. I really thought I was turning a corner on this disease and was going to start tapering off this horrid medication. For some reason, God had other plans. And instead I’m doubling the medication on top of a high dose injection.

Last Sunday morning, my family went to church together, and it was a healing service. We went up to the altar and prayed- mostly for me and my mom (she has had some serious health issues recently). I felt like God told me I was healed. Then Sunday afternoon, my dad goes to the ER for an infection in his leg, and ends up having a brain bleed while he’s there (thank God that he was able to get immediate treatment!) And now I’m not too far off where I was when I had to be hospitalized back in January. So, I’m confused. Is this a test? I want to trust God. I do trust God. And I know that His timing is perfect and I am not to rely on my own understanding. And for whatever reason, all that has happened to us this week is for good. I do trust that. I just don’t know what to do to get through it. My faith feels a little shaky for the first time since all this started 6 months ago. I’m finding that I don’t know how to pray through this. I know God knows what I need, what my family needs. I always ask for His comfort and guidance. I guess now I just settle in, keep praying, keep listening for his guidance, and try to be obedient.

Tuesday

Breakfast bowl: brown rice, an egg, sautéed garlicky broccoli, avocado, raw sauerkraut.

Pomegranate Chia Fresca

Snacked on pomegranates, carrots, cashews, and raisins. And had this leftover frozen lasagna for lunch. Almost vegan Alfredo.

Organic plain yogurt with pomegranate seeds. Generally avoiding dairy, but this was a treat.

Alkalizing green juice.

The last of the coconut banana breakfast cake. Melted two squares of 70% dark chocolate on top.

Red beets and apples. Super sweet.

Today is my last day on doxycycline. Starting banderol and samento (herbals to treat Lyme) tomorrow. If all goes well, the only prescriptions I’ll be on for the next few weeks are prednisone (steroid) and nystatin (antifungal). What an improvement from a couple of months ago when I was popping at least 7 different prescription medications. I’ll also be using dexamethasone mouthwash as needed when having mini-flares.

Gotta get focused on sleep, exercise and meditation to move to the next level. I feel like I’m at a good place with nutrition. Not perfect, but consistent. My supplement plan is working. And I’m working on minimizing toxin exposure. But I’m not getting to sleep at a decent hour (though we sleep late, so I get enough sleep, just not at the optimum hours between 10 and 7). I’m not exercising regularly. And I don’t have a consistent stress relief/meditation practice going on. I think making changes in these areas will have the biggest impact on my health. Following through is the hard part.

Anyway, for dinner tonight: tuna salad (vegenaise and organic Dijon) on a bed of spring greens, with yellow tomatoes and roasted red pepper, drizzled with champagne vinegar, lime juice, and hemp seed oil.

Wednesday

Quinoa muffins and mini-quiche with watermelon. Strawberries and chia pudding. (Yes, I almost forgot the pic. The quiche is missing a couple of bites.)

Leftover buckwheat pizza.

Alkalizing green juice. Celery, cucumber, apple, ginger, lemon.

Pecan crusted chicken on a bed of romaine. Rosemary roasted root veggies. And roasted cauliflower with garlic and onions.

Generally feeling ok today. Starting to notice trends in my energy level. I usually feel great first thing in the morning, then get tired after breakfast, then feel exhausted and about to pass out in the early afternoon. Then I get a boost of energy around 8pm. This leads to me trying to do too much late at night and not getting to bed early enough. And I really struggle through the bulk of the day because I am so freaking tired. Just the severity of my exhaustion varies depending on how badly I’m flaring. A lot of what I’ve been reading describes similar energy patterns as a symptom of low functioning adrenals. So, one of my main goals moving forward is going to be getting on a more manageable schedule. This will be a challenge with my non-napping 2 year old, and my life-long night owl tendencies. But my exhaustion during the day has been really crippling lately. I can’t think straight and literally stumble around because I can barely stand up. I dozed off on the back of my daughter’s head the other day while helping her with a learning game on the computer.

On another note… my natural doc has agreed to shorten the duration of doxycycline (Lyme treatment) as long as I do an herbal “tail” of samento and banderol for 2-3 months. Soooo, one more week of antibiotics and I can knock that off! Three more weeks of antifungals, and that should be done. Hoping I can detox from all that and be primed for tapering prednisone by my next appointment! I got the sense that he felt he was going against his better judgment by cutting the antibiotic treatment short. But I’m balancing here between conventional and natural medicine and the information I’m getting is completely conflicting. And I’m no scientist. Besides, if the scientists can’t agree on this issue (Lyme disease in general) how are regular people supposed to make educated decisions about their own healthcare. It’s a crapshoot. So I found a bit of a compromise that I think will work for me. For now, anyway.

Thursday

Greens, eggs, and ham for breakfast.

Plus strawberries with bee pollen. My husband does not like the bee pollen- says he’d rather eat live bees. Lol. Oh well, more for me.

After a very restful evening, I’m feeling much better this morning than I did yesterday.

Off to a natural health seminar this evening on women and hormones. Stopped off at whole foods on the way for a late lunch.

Had leftover beans to take my nighttime meds. Didn’t take a picture.

Lesions are slightly affecting my ability to eat certain things now. Raw leaves and crunchy things that require a lot of chewing are pretty painful. I wasn’t able to finish the kale or broccoli at lunch for that reason.

And I started taking grapefruit seed extract today as a natural replacement for the prescription antifungal. My tongue has seemed on the verge of a fungus flare for a while, so I’m hesitant to have high hopes, but it would be great if my healthy eating and detox efforts show results here and allow me to get off the antifungal. If this doesn’t work, I’m going to talk to the doctor about a candida cleanse.

Wednesday’s Breakfast

Had to be up super early to take my husband to the airport this morning. Ate an orange and took my AM prescriptions (fluconazole, cipro, prednisone, colchrys) and hormones (pregnenolone, DHEA) with some traditional medicinals lavender camomile tea.

I took the rest of my morning supplements with this breakfast when I got back.

I wouldn’t buy this mix because of the sugar and leavening ingredients, but it does make really fluffy pancakes.

I’m feeling better today than yesterday. Both lesions seem to be healing, and I’m really excited that no new ones have cropped up. After getting up so early this morning, I took a long nap early in the afternoon. Night sweats continue to be a minor, but annoying issue. And I sweat just as much if I sleep in the middle of the day. Completely. Drenched. Warning- potential TMI statement coming up… But something that has me wondering about the hormones- I’ve had really sore nipples the last couple of days. I ignored it at first, but it’s undeniable now. Not a problem- and certainly not a reason to stop taking the hormones by any means. Just definitely a noticeable change and makes me wonder what it might mean. Pregnenolone is the “mother” hormone, from which most other hormones are made. So is it the pregnenolone that’s making them hurt, or some hormone that my body is making from it? Or the DHEA? But DHEA is a precursor to testosterone, so I don’t know how that might be connected. For now, I choose to assume that this is a sign that the hormones are working.

Update: the pain only lasted a couple of days and then was completely gone. Not sure if my body just adjusted, or if it’s unrelated. Should follow up with doc about it…

Thursday’s Dinner

Got home late, so it’s quick and easy tonight. Organic butternut squash soup out of a box, and gluten free/dairy free grilled cheese sandwiches.

Soooo much information from the doctor this afternoon. Don’t even know where to start. I’ll post more specifics in my current treatment plan later.

I’m not feeling as good tonight. I did not take fluconazole this morning, since I was supposed to do 10 days on/10 days off. Today was the first day “off”. By the afternoon, I could feel thrush creeping up my tongue. I have a lesion (currently small, but seems to be growing fast) on the mid-right side of my tongue. And a spot on my lip that I think started when I bumped my mouth with my two-year-old’s head, and it’s now turning into a lesion. So I guess my two day stretch of feeling perfect is over. I felt really good all day, but I’m feeling very worn out tonight. Throat is a bit scratchy as well. I took fluconazole as soon as we got home tonight, and will be filling a diflucan prescription tomorrow, as well as cipro (antibiotic) to combat a nasty infection of bad bacteria in my gut. I’ll also be starting a hormone (pregnenolone) and DHEA tomorrow. I’ve got to get some B6/B12/folic acid to help with a genetic issue that causes… something… to be too high. (I’ll come back and fill that in later.) And I’ve got to get a bifido-specific probiotic, since my gut has a lot of good bacteria, but absolutely none of that particular (and important) strain. Doc said I could scale back my vitamin D supplement from 10,000 IU to 6000. I was a bit deficient, but not nearly as much as he’d expected.

So, for now, I’ll continue prednisone at 20 mg for the next month. Doc is focused on cleaning up my gut so the other treatments can be more effective. Once my digestive system is working properly, we’ll attack the Lyme infection with doxycycline, switch over from fluconazole/diflucan to grape seed extract, and attempt to taper off prednisone.

Friday’s Dinner

Quinoa Pistachio Pilaf and a salad with poached chicken. The pilaf was good. Got it out of the Wheat Belly Cookbook (a gluten free cookbook). My mouth is hurting tonight, so I wasn’t able to eat most of the salad. Ate the chicken, olives, and alfalfa sprouts. But the lettuce and tomatoes were harder to eat. Had a glass of decaf black tea with stevia.

Midnight update: I ended up taking a pain pill tonight. I could’ve gotten by without it, but I feel sooo much better now that it’s kicked in and really wish I had taken it sooner. I was dragging and irritable all evening because I was so uncomfortable.

I just spent a full hour prepping my meds and supplements for the next week. Here’s what my pill boxes look like when they’re all ready. They barely close. The purples are morning, green is afternoon, and blue/clear are for evening.

And this is what’s all in there.