The Road to Recovery (or "Something is working!")

Hieeeeee. I've been waiting to post an update. I wanted to live with some dietary changes and lifestyle habits before writing.

Shocking revelation: I've come to find, that unfortunately, there may not be one diet that suits me.

When i started the more recent part of this journey, the last 2-3 years or so, my goal was to have a very specific list of foods i could and could not eat. Dream scenario: I would just stick to that and my skin would clear up, my energy would return and i wouldn't look pregnant after eating. Well folks, I'm sorry to say that may not be in the cards for me. 

It's become obvious to me through all of these dietary changes, treatments and experiments that one diet for the rest of my life isn't realistic. Not only am I in a different phase of healing than i was 2 years ago but so many factors affect my digestion, energy and general sense of well-being.

Um, so what's the good news? Why should I even listen to you?

The good news is that I AM feeling better.

When i'm tired on the road (Dustbowl travels 200 days a year now(!)) i feel like a normal tired person. I don't feel exhausted or like "how could i possibly get up there and perform this show right now/get out of bed" (which is what a lot of the past 2 years felt like.)
I don’t feel tired all the time. it’s not a perfect result. If i have some FODMAPS, or too much alcohol or something else that inflames my system, i feel like going to sleep. (I often will sleep if I can and that’s what my body is asking for.) But overall I’m feeling more "tired like the average person on a tour that doesn’t get regular sleep".
I also don't feel cripplingly depressed anymore which is a huge relief.

My skin has improved dramatically. The only treatment that seemed to budge that symptom was doing chelation. While it was expensive (and I'm still paying for that year of medical bills, thanks insurance!), I believe it was very necessary for me to rid my body of those toxins. My skin is proof of that.

Digestion wise, my diet is still very limited. But, if i stick to food in my life being practically perfect (in terms of what makes me feel best and not "what I'd like to be eating") then I can get away with this crazy tour lifestyle of never sleeping at the same bedtime and experiencing light to moderate stress on a consistent basis. I have energy and I am more patient, pleasant and physically comfortable.

HSP/Empath

The last 3 years or so have definitely been more about food for me. A lot of self-searching, a lot of self-love practice (still a lot of work to do there) and self-acceptance practice has been instrumental for my physical progress. The more I do this internal work, the less likely I am to self sabotage by going "off diet" as a way to distract my heart and mind from what it's feeling.

A friend of mine suggested in the past month that I should read "The Highly Sensitive Person" a (self help) book about people who are easily overwhelmed by the world around them (stimuli) and their internal, emotional lives. I've been told my whole life "you're so sensitive" which, i often took as a criticism. That I should not be hurt or affected so deeply by everything. I always have been. I cried and almost threw up and had to run out of the movie theatre during the end of Edward Scissorhands (spoiler alert) when the town is chasing him. Similarly, I leapt out of bed to go bawl in the bathroom just this year when Brahm and i rented Chappie and (spoiler alert) the kids were throwing rocks, teasing and kicking him. And it obviously doesn't end with movies...

I've seen HSP lately all over the place, others confirming I'm not alone in essentially being shamed for operating from a place of feeling and intuition. It's real, I pick up on nuances that are definitely there and that not everyone picks up on in relationships, in conversation, in the temperature of a group. It's also called being an Empath which i think is seen as a little more woo woo. I'm beginning to let go of the self judgement that's been impressed upon me; it's gonna take some time.

I used to think this was a weakness. I realize now:

THIS IS MY (not so secret) SUPERPOWER.

Though annoying/eye rolling/tease-inducing to some, I think reading this book was one way for me to accept that yes, I am sensitive, but it's not something i need to hide or tuck away or PROVE myself out of. Being sensitive means that I have an explanation for the chronic empathy (or lastima as Katya would say) that i experience on a daily basis. I can revel in the emotions i feel while singing and then give that gift to our audience (or to myself if i so choose). It makes me a more intuitive friend and wife. 

I am still struggling with the New England work ethic i have, where i wrap up all my self worth in the job i'm doing and then harshly criticize myself for not being better. This whole life I've spent working to prove that i deserve a place on this planet. I wonder what it's like to feel like you're meant to be alive and not that you have to earn your keep.

It extends to physicality as well. If I weren't so sensitive (HSPs are statistically more likely to have digestive/autoimmune issues) who knows if I would have made all these changes to my life and ended up in a healthier, happier place? I've been eating "so clean" for so long that I can really feel the difference if I introduce a food that doesn't agree with me now, or if i over do it with booze (which takes much less, than It used to). It helps keep me on track because I don't want to feel like crap, i'm better at avoiding foods because it's usually not worth it for the "cheat" experience. 

Things I'm doing now to continue healing

You can follow what those meals look like on tour with my instagram hashtag #howdoyoueatontheroad and food I eat in general with my instagram hashtag #feelsgoodblog

 

DIET

I was focusing on SCD + Low FODMAP for a couple months and still experienced bloating. I started looking into the Fast Tract Diet (which does a Weight Watchers style points attribution to foods based on their "fermentation potential") to see if that would help. I believe it did to a point. However, for cases like mine that are a little more difficult to pinpoint and mitigate, Dr. Norm Robillard (author of The Fast Tract Diet) suggests limiting carbohydrates to 20g> day. His app doesn't account for that so I switched back to using My Fitness Pal where you can control macros you're tracking very specifically. I knew if I was going to limit carbs by that much, I'd need to up my fat intake. Essentially putting me in the ketogenic diet basic framework. Once I became vigilant at carb counting. I noticed that if could stay on track i was sated, my bloating reduced substantially and that overall, the diet generally agreed with my system (for now).

This means i'm aiming for percentages of 5% (specifically 20g> of carbs a day), 80% Fat and 15% Protein. I am not currently testing to make sure I stay "in ketosis" but I am concerned with the carbohydrate number as carbohydrate malabsorption and gut fermentation seems to be the more prominent reasons I keep bloating and feeling zapped of energy.

The foods I'm eating are very similar to what you've seen me list before, i'm just tracking how much I'm having now. Eggs, Pasture raised animal fat (no, i'm not worried about cholesterol ), Greens (wilted at home, usually a salad on the road), Pasture raised/organic meats (the fatty-est ones if available) and limited dairy (hard cheeses, experimenting with heavy cream in coffee etc.) I am allowing alcohol (red wine and tequila/soda mostly). I am very aware of the irritating and inflammatory effects and try my best to be picky of quality and not overdo it.

It's working for now; so I'll do it until I don't, just like everything else.

SUPPLEMENTS

Under the supervision of Dr. Ruscio, my functional medicine doctor in SF,  I'm on supplement rather than pharmaceutical treatment for Crohn's Disease: Curcumin from Turmeric for anti-inflammation, Vitamin A, Digestive Enzymes, Betaine HCL, three types of probiotics as well as self-prescribed/leftover from past doctors: Concen-Trace Minerals, and chlorella (to continue chelating until my skin is blemish free).

This is working out well for me. We talked about FMT as a last resort if the heavy probiotic therapy doesn't rebuild my gut microbials enough but we're not there yet.

SCOBY facial! also note how clear my cheeks are yahoo!

SKINCARE

I use FATCO religiously at home and on the road. Their oil cleansing method of feeding my skin from the outside while I'm working on changing the inside with diet has made my (non broken out) skin look so healthy! I am so hooked on using organic, conscientious skincare as I think that part of my problem in the first place was just chemically treating symptoms my whole young adult life. Their face cream is so damn soothing, I recommend all of their products (at least to try) to everyone.
I've also been doing SCOBY facials at home as well as organic peels, exfoliation and hydrating masks to keep the skin looking and feeling healthy and to prevent any breakouts from traveling/stress/not sleeping/dehydration. They look weird but the acid from the SCOBY really does a number on eating away dead skin cells and keeping my complexion bright. I do one RIGHT when i get home from tour and right before i leave again. As soon as I take it off I use these tools if i need any blackhead extraction while everything is moisturized and right at the surface, then i tone with FATCO toner + rose water. 

SLEEP/MEDITATION

It's very difficult for me to get proper "what is recommended for a normal adult" sleep on the road. We never go to bed at the same time and rarely get 8 hours consistently (listen to this podcast to learn more, see also page 17 of the transcript for shocking info on bed time/sleep amount if you're not going to listen to the podcast.)

What i do to "do my best" is go to bed ASAP after a gig, I wear amber glasses to cut blue light as soon as i'm in the hotel room (and i use night shift on my phone). I wear a sleep mask and earplugs while sleeping and I do a guided meditation every night. I sleep as long as long as my body allows and when we are off the road i try to go to bed around 10p as frequently as possible to recoup any sleep deficit. 

EXERCISE

Let's be honest, i'm not really exercising. I try to walk as much as possible at home and on the road. I have grand plans to do yoga but usually spend off tour times trying to get rested and chill for a minute before we go back out. Yoga though, not cross fit or spinning like the old days, is what I think would benefit my nervous system right now. I just need to motivate...

 

Revelations

I think I had to acknowledge I was ill to realize that I'm happier knowing I'm not perfect and don't need to be and stick to a lifestyle that makes me feel well.

Accepting that my body has trouble digesting and that I'm sensitive is part of my solution. There is no one diet for me, there is just what I'm tolerating right now. Of course, It's hard for a type A person like me not to have a "fix". To not be able to get to "normal". (What does that even mean? Be able to eat crap food and feel fine? To have a flat stomach 100% of the time? To have perfect skin?) Maybe I was presented with physical circumstances as a method of accepting myself, as a way of learning to let go of shit that doesn't matter and be a more patient, loving and positive person. I certainly think it's a good lesson to learn before I bring any children into this world. It helps me strive to be a better partner, friend, co-worker, self.

2015 was the year of "give no fucks", during which I gave entirely too many fucks about so much bullshit. I think 2016 is the year of letting go (dare i say, actually giving no fucks?). I've made a lot of progress in setting boundaries for myself (both work wise and also personally). I'm listening to myself and adjusting the plan of action as needed. I'm trying to be present in every moment and take everything i can from those experiences (whether pleasant or not). I'm sure I'll have to switch up what I'm doing again soon. It seems that going with the flow is the point.

OMG, IBD? (and my experience with the Elemental Diet)

I wrote in February how I'd done 9 rounds of Chelation, for Mercury and Lead toxicity. I've since stopped getting IV treatments and (at the suggestion of my budget conscious Doctor) am currently taking supplements to continue chelating in a less expensive, yet effective way. 

The plan was to go back on the diet that had made me feel best in the past. My experience had shown that would be the Autoimmune Paleo Protocol, combined with a Low FODMAP diet. However, this time around I remained symptomatic. I was still bloated after 2 weeks on that diet (strange, for me). I was also still very tired most of the time, something that usually improves on this diet. The one improvement I DID (very happily) notice that improved after chelation was my skin! My acne has really diminished from 8 breakouts a month to maybe 1 or two spots.

I had spoken to Dr. Ruscio and Dr. Lalezar about the diet not bringing about similar results as it had in the past. Dr. Lalezar suggested we re-test for SIBO as there is a chance that it had come back. She also tested me for leaky gut, (an Array 2 for you test savvy readers) to get a sense of how permeable my gut is right now. Dr. Ruscio suggested, prior to me going back on AIP + Low FODMAP, that one option would be going on the elemental diet (an easily absorbable liquid diet) for a time to see if giving my guts a rest on breaking food down would improve my tolerance.

The other option would be to treat me for non-clinical IBD. This is a potential diagnosis for me. That I have an IBD (likely Crohn's due to my presentation of ulcers) but it doesn't present normally. This could be why the Gastrointestinal MD (Dr. Shaye) was hesitant to diagnose me with Crohn's after seeing my blood panel but thought it was likely that I had Crohn's after seeing my colonoscopy. Treatment for that would include a natural protocol of anti-inflammatory supplements/tinctures and making sure that I'm on the right diet for an IBD. (Dr. Ruscio is a "food first" doctor" he believes that for any of the natural/holistic methods of healing to work, you have to dial in food right for YOU first, then treat. I, clearly, am also very much on this train.)

My (Semi) Elemental Diet Experience

Of my own volition (because I hate waiting for doctor's for results and am trying to minimize costs) I decided to first try the elemental diet. I am familiar with three options for this diet: Vivonex Plus, Absorb Plus (which is a semi-elemental diet) and Homemade. The difference between elemental and semi elemental is protein and fat content and the size of the molecules you are absorbing for nutrients. Unsurprisingly, the larger the molecules get the more flavor improves. (I did Absorb Plus because apparently Vivonex tastes like the glue on a postage stamp (is made by Nestle, not the greatest track record for providing us with whole foods) and the homemade one you have to take like a shot because it tastes so bad.) For 6 days I drank a shake that tasted like the milk after a bowl of Kix cereal, not terrible. I remained bloated during the diet but that's not uncommon. It's still giving your guts a rest, even if that occurs. I had some reservations about it as the protein in the shake is from Whey and I don't do dairy on a regular basis. However, I don't have an allergy and despite any symptoms it would still be improving inflammation by reducing digestive work. (See the FAQs here about the soy and whey in the product, they calmed my fears.) This diet can also be used to effectively get rid of SIBO, but you have to take it for weeks at a time. I previously successfully treated my SIBO with anti-microbials, prescribed by Dr. Ruscio.

Things I noticed while doing the Absorb Plus semi-elemental diet:

• I wasn't hungry but I would get very hungry if i didn't continually sip my shake. Dr. Ruscio's suggestion for me was to sip slowly throughout the day rather than DRINK a shake at mealtimes. This would help keep my blood sugar from spiking since I don't seem to do well with sugars or carbohydrates. This was a personal precaution but I think i could have probably taken it normally and be fine. I didn't have a problem with energy or anger the whole week (sometimes an issue with me and carbs!)
• I did find some Casein Curds in my stool. I thought perhaps I'd swallowed a chunk of undissolved powder (that's what it looked like) but after a couple of these appearing and some intense internet research, I found that it's actually "casein coagula." I haven't been able to gather any information on why or how your body makes these little thumb-tip sized curds but it seems clear to me that my body was just trying to protect itself from the dairy and expel it. I noticed this happened again after having a raw milk latte at Mission Heirloom for my Birthday. I avoid dairy on a regular basis so this was a new experience and after I wasn't alarmed by it any more, I was more interested in the function. I can't wait to hear what Dr. Ruscio and Dr. Lalezar say about it. I'd never seen one before, and within this diet and one latte, I'd seen 3 over the course of a week.
• I didn't weigh myself but I'm sure i lost a little weight. My pants felt less tight and the idea was to reduce bloating. I did feel like overall the diet was a good "break" for my intestines, to reduce inflammation and I was able to go back to AIP + Low Fodmap feeling like it was more tolerable and with less bloating.
• I suspect that the treatment for chelation was very agitating for my system. I was symptomatic the entire time and was not strict about diet (more paleo than AIP or low FODMAP). This elemental diet was a good way for me to "reset" my system. Also, if my stool test comes back positive for SIBO again, it will also have been a good jump start to getting rid of it.

IBD info...

My miracle anti inflammation drink. Homemade bone broth and juiced turmeric.

My follow up with Dr. Lalezar for my SIBO and Array 2 results are in later this month. In the meantime, I had the fortune of coming across this podcast that Dr. Ruscio did on IBD! In it he speaks with Dr. Steven Sandberg-Lewis about his approach for IBD: supplements and diet etc. They discussed that the most useful diet for IBD, in their opinions, is the Specific Carbohydrate Diet (which I've mentioned here) combined with a Low FODMAP diet. They also talked about some supplements/nutrients that I take occasionally but not regularly, like curcumin (the anti-inflammatory component found in  turmeric root).

I've been doing AIP (cross referenced with SCD, GAPS, low FODMAP) for the past 2.5 years. So scaling back to just SCD and Low FODMAP would mean re-introducing some foods that I had an instinct weren't causing an issue for me but I wasn't quite sure and was too nervous to truly re-introduce them. I did not do what would have been the most thorough method, which would have been to try one food for 3 days to see how I react. I just jumped in. 

It's important to mention that during Chelation I was not super strict. Since i was so symptomatic from the treatment and chemicals floating around, I ate more liberally, fodmaps and some non-AIP friendly foods that I thought "were fine". I also think, that my wishful thinking about eventually being paleo in the future (which is so much easier than any of these diets, in my opinion) that I wasn't seriously considering FODMAPS my main issue. I think now, that I was wrong.

Last week, I converted over to SCD combined with Low FODMAP, the IBD specific diet. The symptoms of IBD really resonate with my experience and it seems like if that is the real underlying issue (now that mercury/lead are removed as toxins) then this should be the right track. I also had experiential evidence that tomatoes and spices had never really caused a reaction that I'd been aware of. So this was worth a shot.

Within two days, I wasn't completely not bloated but I definitely felt a difference. My pants felt lighter/less restricted, even after eating. My exhaustion didn't disappear but it receded (by about 2hrs less sleep). It seems like, FODMAPS and really focusing on fermentation in my gut could be the key to healing my leaky gut and also figuring out the "right for me" lifestyle and diet. I also noticed a new symptom that I hadn't before, either because it was lumped in with general un-wellness or I was confusing it with my monthly cycle. Intestinal cramping is happening to me if i have FODMAPS, like onions in my Chipotle Guacamole for instance (which, if you know me, is a TRAGIC symptom to discover). It feels like period cramps, despite not being on my period.

Over the past week I've been able to hone in on some things that are true for me, right now:

• I cannot have any FODMAPs, even Avocado
• I must stay strict on SCD (no starches of any kind that aren't "legal")
• I can tolerate tomatoes
• I can have (approved) drinks ONE night a week, two is pushing it, three is fully symptomatic.
• I can only have dry farm wines right now, if at all.
• I can have tequila or potato/corn vodka ONLY as liquour
• Eggs, on occasion may be fine. Not pushing it.
• I can have ONE glass of Kombucha a day
• I can have coffee if I dilute it but 1 or 2 a day max
• I definitely still have parasites. Doing another cleanse in april. Organic Olivia's is out now!

I do think I mentally blocked fermentation and FODMAPS as being the true possible culprit. For me, it's way easier to just eat tons of vegetables and proteins rather than a Low FODMAP diet. SCD already doesn't allow starches: grain is out, potatoes are out, sweet potatoes are out. Low FODMAP cuts out a ton of fruits and vegetables. This diet is very similar to what I'd already been doing but I can add back in things like: Eggs! Seed Spices! Some Nightshades! In hindsight, my GI doc, prior to my colonoscopy, mentioned they tried to get patients with Crohn's to go on a low FODMAP diet but it's hard for people to stick to. The podcast I linked to above also talks a lot about the science behind the digestive system, IBDs and FODMAPS/fermentable prone foods. Like AIP, this doesn't have to be forever! It can be a tool to help heal up the inflammation/ulcers and then you can re-test (by careful introduction), if over time you can tolerate more FODMAPS.

AIP, SCD, Low FODMAP, GAPS and Paleo friendly dinner: Kabocha Squash, Duck, Wilted Chard.

So, with renewed vigor (and a little bit of disappointment about avocados and Chipotle). I am committing to SCD and low FODMAP. It's my way of doing field research before paying someone to tell me what to try next. Beyond that, I'll circle back with my Docs (and possibly may even re visit my GI doc to check in) to see about how to move forward with treatment. 

UPDATE 3/30/16

I spoke with Dr. Ruscio today and followed up with Dr. Lalezar this past Monday. The plan going forward is to focus on IBD therapy. That will include a specific probiotic therapy protocol, changing up the digestive enzymes that I take with each meal, experimenting with a semi-elemental diet from time to time (see Absorb Plus, above) and some other Crohn's/ IBD support supplements. In a month we'll check in to see how it's going. I'm also to experiment with a low fiber diet and see how I fare. Some people with IBDs have a hard time with insoluble fiber (see the podcast mentioned earlier for more info). We talked about FMT being a sort of "last resort" but it exists as an option and has been proven to help many people with Inflammatory Bowel Diseases. That's a little further down the road at this point.

Chelation is a Bitch.

Today is (fingers crossed) my last chelation treatment! It's DMPS which binds with Mercury in your system so you can pee it out. That means I'll sleep a ton tonight and wake up late and tired tomorrow and probably the next couple days. Aside from the sterile, medical, literal part of this journey, there's the part where you actually have to do the work, walk through the fire.  It sucks. Day to day, it sucks. I've talked a bit about the usual gastrointestinal symptoms, which are annoying. Those are definitely around for Chelation (for me). It was the same during killing off SIBO. Regardless of my practically "perfect for me" food intake, I was super tired as well as bloated and waterlogged. I was SO moody. I sometimes don't feel like "impatient" and "frustrated" do justice to describe how terrible a version of myself I become. I'm just not nice, to myself, to others. I'm snappy and exhausted and sometimes downright mean or vindictive. Meanwhile, my real self, my true self, is inside me, hearing and seeing me be such a jerk and then judging that behavior and feeling terrible that I'm not trying harder to not be a jerk. It takes so much energy and patience to be the best version of myself and when those energies are depleted I'm a real snarky pill. The second month of treatment for SIBO, it was less of the physical stuff and all of the mental stuff plus anxiety and big depression.

Fatigue

With any of these reactions (SIBO, Die-off, Chelation) I'm mostly just so tired. It feels like I haven't slept in days but I'm actually sleeping 9hrs minimum. Don't get me started on "maybe you're sleeping too much." That's not a thing for me. Let's just leave it there. Some people need more sleep than others regularly and then there's excessive sleeping. For me, (10-14 hrs) it's a sign that I'm trying to repair or recover from something. The problem is, I'd been needing excessive sleep for years but was on the go all the time so I wasn't getting nearly enough. Not even the 8-9 a night minimum at times. I slept all weekend, Monday's were the worst. (aren't they still?) I also experienced insomnia during chelation, not usually an issue for me. I'd lay in bed, meditate, use essential oils, take magnesium, take valerian root, I'd just lay there awake. One night last week, by around 6a I was like "maybe I should just get up and make coffee, by 7 Brahm will be up and then we can go for a walk". But at 6:30 i fell asleep and finally woke up at 11a. 

Fatigue is probably one of the symptoms that bothers me the most. I'm a pretty energetic person so feeling beat, despite eating nutrient rich foods and prioritizing a healthy lifestyle is soul crushing. I was working two jobs at one point last year, not a problem if I was feeling well. I would come off the road and directly report to the office. It was too much for me at the time (and would be still, if i was still there). I needed the extra money to pay for all the health costs but at the same time was stressing out my system by never having down time. It was a lose, lose situation. They weren't getting my best self and I wasn't resting enough to heal. I considered briefly whether I could apply for disability for income supplementation. The mental and physical exhaustion and inability to problem solve, complete thoughts and retain memories was seriously debilitating. I had a friend say that it would be hard to argue for that, if I was performing all the time. I understood that perception and it sounds logical but singing and dancing on stage for 2 hours or working an 8 hour day AND performing for 2 hours a night, are vastly different. Of course there's more work to be done than the two hours I spend on stage but the lifestyle requirements and level of work saturation per minute between the two jobs require different amounts and types of energy. Not to mention working for yourself and working for a company also vary in stress level/type of energy output. I never did apply but I did wish for something to give.

I could tell that the Chelation had turned a corner when the fatigue began to lift. I wasn't even close to feeling back at 80% but at least I felt 60%+ rather than 40% or so. After 5 Chelations and two tox screens I started to wake up feeling not tired. Not rested, mind you, but not tired. My mood was also lifting. As long as my food was dialed in, i felt more like my usual emotional self.

Depression

I had some serious bouts of depression last year. Usually while in the middle of treatment, or in between when nothing seemed to be budging. It's gotten pretty dark at times. I like to think of myself as a mostly positive person. I like to lead from a place of joy and positivity. I can be a total jerk (see above) just like anyone else. Though, usually if i'm healthy, i skew happy (maybe a bit more nervous than the average person). If i'd never experienced the 80% improvement in my symptoms and mental state prior to this depression, I'd have more seriously considered going back to prescription drugs for relief. However, I know now that I can get there without that kind of therapy. This was a huge revelation for me back in 2014/2015 when I realized that my anxiety and depression tendencies all but disappeared with the right diet and sleep habits. There was also a little bit of regret, a little bit of "if i knew then what i know now" about all the anxiety I'd experienced in the past. Of course, who really knows what factors (puberty, chemical imbalances, stress) were at work during those times? It's possible food wasn't the answer back then, but to know it could have been a helpful tool is hard to think about. I'd let that influence me so much back then. I'd said "no" to so many experiences. None of the diet changes I made back then, were quite enough to feel the relief I've experienced now.

image from instagram

So, anyway, full disclosure: i was borderline suicidal more than once this year. I say borderline because i was acutely aware that i didn't intend to take action. But, it's incredibly isolating and scary to feel that way, seemingly out of the blue. I knew it was important to talk about these feelings, just in case. I spoke with some close friends and my husband about it. i needed extra support. It's scary to bring up, to be that vulnerable, to feel "weak". I didn't want to scare them! Of course, a part of it is the disappointment in myself that despite my life being a beautiful gift, that I'm so thankful for, I can't live in a state of grace and gratitude. That feels like failure to me. "Oh, woe is me, I have an amazing husband, all my arms and legs, wonderful friends, a job and a roof over my head and i'm tired and can't eat what i want". One more thing to fret about, judging myself for not being grateful and joyful enough. There was a part of last year when even on stage i was having a seriously hard time. I'm familiar with depressions constant undercurrent, but being ready to cry while performing was one of the darkest times of my life. If I couldn't let it all go and be joyful in that environment, where could i?

I tried to sympathize with both parts of myself, just like i would with a dear friend. It's fair to be upset that I might not ever feel as healthy as i'd like. It's fair to have a pity party that I might live at 80% of where I'd like to be. It's OK to stay in and hermit to take care of yourself, if that's what you need. It's also OK to have a drink or eat a thing if that means you won't go completely off the rails mentally and emotionally. The better part of the end of 2015 was like that, bargaining with myself over food, reintroducing alcoholic drinks (at least), sleeping in, not exercising if I was too tired, leaving my day job, not trying to do all the things. I listened to my body and mind and heart and gave myself what I was asking for. I tried my best to just be caring and nurturing. I also don't accept that everything is OK if i'm feeling that despondent. Knowing what i've learned about my physical self over the past couple years, i deduced that it was due to the treatments. Toxicity, bacterial imbalances, diet, lifestyle were most likely at fault and I just needed to stay the course. I'm feeling better now, but I'm keeping a close eye on that to gauge my progress.

photo cred: @ckelso via instagram

What's Next

I go in on Thursday of this week to take the next tox screen. It's a challenge test (the same one I got in the beginning to determine if I had metal toxicity). When I come back from February tour, I'll go in to talk to the doc about my levels and we'll formulate a "next steps game plan". In the meantime, I've started on high dose or "mega-dosing" probiotics. I've heard that Elixa is a good brand to use when recovering from SIBO. I wanted to wait until I knew my guts were in better repair (or more likely to continue to heal, once mercury was out). I just started taking some dissolvable leaky gut vitamins, beyond my normal routine of bone broth, some of these vitamins and nutrient dense foods like chard and grass fed liver. I'm hoping that after a month or so of AIP, Low FODMAP diet without mercury in my system, will allow my body to recover enough to reintroduce other vegetables. Glory hallelujah.  It's much easier to eat out while eating a Paleo or Primal lifestyle than it is AIP or Low FODMAP (not to mention while doing both.) But we'll see how I'm feeling and adjust as needed.

The hard stuff (my story part 4)

Read Part 1, Part 2 and Part 3

Maybe Food is not the (only) Answer?

After my success with AIP and Low FODMAP i was sure that with proper nutrition, I could save the world. On this journey, I have found how very important it is to be your own health advocate. All doctors take different approaches, come to the table with a different set of tools, want you to take different supplements. Its up to you to do research on your own, make a note of how you feel, stick to the program (or not) to make progress. 

I still believe that food is medicine. There are plenty of people out there who've gone this far down the rabbit hole and are living much happier, healthier lives. There are people who feel that way from just switching to all Organic and non-GMO food! My story is just a little more involved. I still believe in food being the foundation, for everyone. It's just about finding what makes you feel great, and eating that. Beyond that, sometimes we all need a little help.

I made a hashtag while traveling with the band #howdoyoueatontheroad which is what people ask me when they find out I'm doing AIP low FODMAP, here's some examples, lots of food bags in the van and stops at the grocery store!

Functional Medicine

I met up with Dr. Ruscio in September 2014. He's a functional medicine doctor located in Walnut Creek, CA. I told him all my prior symptoms, my family history of IBDs (Celiac, IBS, Diverticulitis etc.), my current symptoms, the elimination diets I'd tried, what worked, what didn't. He ran the gamut of blood tests. (my labs are up on another post for reference). We did stool tests, everything. I wanted to check for lyme disease, epstein barr, parasites, ANYTHING that could be holding me back from feeling 100%.

SIBO

My tests came back to show that I had SIBO, small intestinal bacterial overgrowth, and Candida. Over the next two months, we treated the SIBO with anti-microbials for two months. You can also treat SIBO with antibiotics. I'd been trying hard to rebuild my gut microbiome and didn't want anything else wiping it out so we went this route. My symptoms were awful. Month one, it felt like I was off AIP (despite sticking to my protocol): Bloating, irritation, fatigue, it was a super bummer. Month two seemed to have all the mental symptoms but none of the physical. Bloating went away but I was super anxious and depressed and moody for that month. Once it was gone, I was back to square one. I felt just as great with NO SIBO as i did WITH SIBO. Still on the same diet, still at 80%.

Dr. Ruscio and I followed up. We re-tested for SIBO twice just to make sure it was gone. I wanted to get scoped. I thought that the rest of the symptoms I was having were linked to an IBD, my tests showed I have markers for Crohn's Disease, gut inflammation and low b12. My family has a history of IBD issues. I made an appointment the next day to meet a gastroenterologist. We scheduled an endoscopy and colonoscopy as soon as possible.

Crohn's?

The findings from the scope were that I had a hiatal hernia and ulcers in my intestines, mostly around my ileocecal valve (the junction between large and small intestines.) The hypothesis was Crohn's Disease. It would have made sense that AIP and Low FODMAP improved my condition as Crohn's is an auto immune disease, mostly manageable with diet. 

They wanted to do a capsule test and standard GI doc blood tests, to be sure. I swallowed a pill shaped camera that would take pictures as it traveled through my guts, to see what was going on in the stomach and small intestines, where the colonoscopy and endoscopy don't reach. I'm skipping a chunk of time here but basically the capsule test showed that that was all they saw. They also did a "gold standard" blood test for Celiac, and an IBD panel. They don't think that I have Crohn's definitively, based on that blood test, despite my genetic markers. They did want to re-test for SIBO again but I chose not to at that time.

In around July of 2015, I worked with a nutritionist briefly who has some really great information on digestion, here. I think this video series (which costs 50 cents) is SO SUPER AMAZING! Learn how your body actually breaks down food, the dangers of antacids and how important HCL and bile are to that process. It would be instrumental in improving your own digestion and it's basically free!

Parasites

I put in a consultation call to Megan Rand over at Ginger Newtrition. I found her through a skin care company i LOVE called Fat Face Skincare. Megan and I went over all the steps I'd taken so far with gut, diet, stress etc. and talked about how all my blood tests were coming back relatively "normal" yet i felt 80% and looked awful. I asked her if anything seemed like it was glaringly obvious, in terms of an option I hadn't tried yet. She asked if I'd done a parasite cleanse. 85% of her clients that are struggling with similar issues, passed large parasites on a cleanse. I followed the link she sent me HERE. I also checked in with Will (see nutritionist paragraph above) to see if he'd heard about it. He sent me to this site. 

I followed Dr. Hulda Clark's parasite cleanse and passed eggs, flukes, roundworms, pieces of worms. It was so crazy (and gross, but still cool). I ended up doing the program twice to be sure I'd gotten them all out. KEEP IN MIND THAT MY PRIOR LAB WORK SHOWED NO SIGNS OF PARASITES OR EGGS, AND THEY HID DURING MY COLONOSCOPY AND CAPSULE TEST. They burrow, it's gross.

No part of my condition improved after the cleanse but I was glad that however the parasites had been allowed to thrive in my body, I'd gotten rid of them. Being parasite-less frees up the energy my body to run more efficiently and work on healing rather than supporting other organisms. I suggest this for anyone who has any leaky gut, digestion, skin or auto immune symptoms. If you are experiencing those, your body has probably been compromised enough to allow them to grow from egg stage to adult stage.

Heavy Metal Toxicity

Fall of 2015 I saw another functional medicine doctor, Dr. Lalezar, located in Los Angeles.  Through her standard round of testing I found out that I have unsafe levels of mercury and lead in my system. We assume they were from amalgam fillings that I'd had since childhood. (I don't eat a lot of fish in general, or larger, mercury heavy fish. Though I could have gotten some from eating sushi occasionally.) Lead is also found in some municipal pipe junctions (via tap water, it can get into you). Her protocol is remove toxins, then work on rebuilding and healing the body. I'd been working on healing and re building with food but didn't know that I'd had this metal in me, preventing the healing. (I still check in with Dr. Ruscio, I think it's important to keep everyone in the loop so we can all learn from different experiences. Everyone presents differently, there's no right way to treat someone.)

I'm in the process now of going through chelation, where they pull the metal out of your body. There are varying schools of thought on how to do this (oral, IV). It can be dangerous so you need to make sure your body is ready to go through it and that if you do have any metal fillings left, that you have them removed first. (I suggest finding a holistic dentist as removing amalgams must be done very carefully and specifically.)

It turns out that after 5 rounds of chelation and a re-test for levels, they higher than we originally thought. I am doing 2 more of DMPS IV chelation for mercury and 2 rounds of Calcium-EDTA IV for lead. She does this in conjunction with Glutathione which is an antioxidant that helps your body pass the metal quicker into your urine so as not to re-toxify you during chelation. It is exhausting, just like the SIBO treatment. I've had physical symptoms: bloating, fatigue, mood swings, loose stool, irritability during the whole process.  My hope is that metal toxicity could be the final key in unlocking the final part of my story. It causes the immune system to be weak, it causes leaky gut, one of the main side effects of mercury toxicity is fatigue and brain fog. 

Here's some information on Chelation:

Ben Greenfield's Podcast on Heavy Metals

Crucial Dos and Dont's about Heavy Metal Detox

I'll post again as I have an update!

For now I'm scheduled to chelate through Feb 18 when we retest to see where I'm at.

Skin Update

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My skin examples, ON AIP, good days and bad.

It seems to break out just before ovulation. It's not yet consistent. It's gotten better with the chelation. It's seemed to start in my cheeks, heal there as i changed my diet. It inflames if i have any offending foods (sometimes by accident). It's sort of traveled down my face into my neck as I keep progressing step by step to feeling better.

Update 6/18/16
See my Road to Recovery post here!