Looking Back at Being Tired

Brahm and I take walks in the morning when I'm home and off a tour schedule. I was remarking a couple days ago at how easy it felt to hike through the Silver Lake hills. Only a year ago, it was still really difficult. I had to time the walks just right after eating, or make sure the walk wasn't too long or hot, or it would shut me down. TO WALK. I don't think that (even) my immediate circle even really understands how taxing daily tasks were that recently.

Brahm asked for an example of when I last remembered not being tired, before now, and I said I could literally not remember a time in my life that I wasn't tired all the time. I know that kids are tired, stay up too late etc. but I really can't remember a time that I wasn't exhausted during first and second period, needed a nap after lunch (especially after lunch! #lunchables), being exhausted at the end of a school day, struggling through practice or rehearsal, sleeping half the day away on the weekends. I'm learning now that is not normal; common, yes, but not a sign of a healthy body, especially a young, strong one. (Side note: food is supposed to energize the body not put us to sleep!)

Exercising a year ago was virtually impossible and it's been three years since I've prioritized fitness. I've only this past year started doing walks more regularly and making it to yoga. Very recently I've started adding in what I like to call "micro workouts" I can't always rally myself mentally to attend a class but I want to get stronger now that I'm feeling up to it. When I'm home (or at sound check, or getting gas for the vans) I'll do body weight exercises like walking lunges or squats or jumping jacks. It may seem like too little to make a difference but you'd be surprised! Two months ago I could do one military push-up (arms beside your body, not out like a "T"), now I can do 10. I've been focusing on core strength. Two months ago I could hold plank for 60 seconds, now I can to ab roll-outs. At home, with access to weights, I'll do walking lunges with a kettle bell or use our pull-up bar while i'm just watching TV or hanging out. Throughout the day, it adds up.

I've followed the advice of other Autoimmune wellness experts and taken things as I can handle them. I'm slowly getting stronger and am able to do more than I was before. I now feel like I'm operating in a 3 steps forward (rather than 2) - one step back, motion. This past month I was home a lot and definitely pushed my abilities to the limits in terms of socializing, alcohol, sleep and food, but I'm OK. I use tour to really cut back (livin' on a budget) and nourish myself, focus on sleep and what my body really needs. At home I try to do that but the temptation of seeing friends and having access to tastier food than what I travel with is challenging to resist.

I'm grateful to have my fatigue level as poignant point of reference. A lot of the other health progress I've had has been slow and almost imperceptible at times in improvement. My fatigue level has been a strong indication of my wellness level. Even though its terrible to be tired, I'm grateful that I'm sensitive enough to have symptoms indicate to me when something is off.

SIDE NOTE: my skin has (finally) improved dramatically. Here are some pics to compare to when I was doing the AIP diet.

It's Not Over Yet...

We just got back from tour yesterday evening. I had a follow up with Dr. Lalezar this morning to see if my metals were completely chelated (Kee-lated) after 9 chelations and 3 tox screens. I followed up with Dr. Ruscio before I left to fill him in on the Parasites/Metal state of affairs.

The Bad News

The tricky part about chelation is that when they test you for metals the numbers aren't 100% accurate. Mercury stores in your tissue and lead in your bones, so to get it out they give you a challenge test. As you chelate, you pull more and more out (hopefully, until it's gone.) As I've tested and re tested and chelated my numbers have gone down. However, what it's looking like is that the numbers were still higher than originally anticipated. I still have a 5.9 in Lead (up a tenth of a point from the last test) and 7.1 in Mercury (up a full point from last test). 

Dr. Lalezar said that she'd be comfortable with me stopping IV chelation at this point if I felt better. The issue is that even back on AIP + Low FODMAP i'm still symptomatic. This is confusing and frustrating to say the least. I'm doing everything that I KNOW WORKS... and it's not working this time.

The Good News

I don't have to continue IV chelation. I'm going to use supplements like N-Acetyl Cystine, Chlorella and foods like Cilantro to naturally detox the rest of the way. 

The Part where I could Cry with Frustration

I haven't really gone into it yet but THIS SHIT IS SO EXPENSIVE. I plan on eventually detailing what last year cost me because a lot of practitioners don't take insurance, or if they do the treatments often aren't covered. It's important for people starting on this journey to be informed about the cost. So, while we've made progress since 2014, every move I make now puts me in the hole. (Being in a band isn't the most lucrative job decision I've ever made, even if it was the right choice for me.) Chelation is $1300 for every round of 5 treatments, each tox screen to see your levels is $350, you get the idea...

Beyond price, it's utterly confounding that AIP and Low FODMAP isn't enough to reset my system any more. I was still bloated and exhausted this past tour. When I spoke to Dr. Ruscio prior to leaving he agreed that going back on the diet hard core was the best plan and we'd check in in 30 days. After that, if I was still having trouble reintroducing foods we had two routes to try. We could do an Inflammatory Bowel Disease protocol of supplements with probiotic therapy. (Not a bad idea since it's possible that i have an IBD like Crohn's but i'm not "deteriorated enough" to test positive for it.) Or, we could try an elemental diet, which is a liquid diet of absorbable nutrients that gives your guts a break from breaking anything down for a period of time.

With AIP+ not working, I'm ready to try anything. Dr. Lalezar ordered a leaky gut test to see if the antibodies for broken gut junctions are present. She also ordered a stool test so we can make the next move with more information. Perhaps there's some persistent SIBO, is one of her concerns. I've ordered one jar of the elemental diet "absorb plus". It's made for people like me that can't tolerate ANY foods. I also know people who've been directed to consume this to help starve out their SIBO as well as heal their digestive tract. One friend stated that she felt like her old self again while on it because it completely eliminated all the symptoms food and toxic byproducts were causing in her system.

The worst thing that will happen is that i try this liquid diet for a couple days and it doesn't agree with me and I go back to AIP+. The best thing is that it DOES agree with me and I get a brief moment of mental and physical break from all this. oh, and food too... (side note: it's $61.50 a jar and each jar has just over two days worth of food in it. So, that's the hold up. Here's hoping It works but I only use it for a bit of time.)

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Current Mood

Today is a challenge. I'm exhausted (physically from being on the road and mentally from still not having any answers). Brahm is rightly so keeping his distance as I'm not the best version of myself today. I'm still hopeful. I hear about people like Meghan Telpner, Mickey Trescott and Chris Kresser who've had "incurable" or "undiagnosable" ailments that have completely turned their lives around. I look forward to being the person most people see when i'm "putting it on" outside of my home, all the time. 

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.

Why is it so hard to figure this out?

When I moved on from diet and lifestyle changes to researching possible underlying conditions, I ran into some issues. The symptoms I was experiencing (bolded below) fell under a bunch conditions. It proved to be invaluable for me to track symptoms and habits so I could communicate clearly with my doctors. Being very aware of how I felt and how it changed based on certain factors was really the only way I could fend off the "what if it's all in your head" assertions that friends, family and even doctors would propose. 

We have been tackling these one by one. As symptoms don't resolve, another issue will surface (proven by tests to exist) that has to be cleared. The latest is Mercury/Lead poisoning. It feels like we're digging through symptoms, clearing conditions on the way, taking factors out as possibilities: diet, lifestyle, stress, SIBO, Parasites, now metal. Brahm and I would laugh every time another issue came to light because all the symptoms seemed to be the same.

"You have to laugh at yourself, because you'd cry your eyes out if you didn't."- Indigo Girls

MERCURY:

Diarrhea, Constipation, Colitis

Allergies/Asthma

Chronic Fatigue

Skin Problems

Anxiety, Depression, Nervousness, Mood Swings, Anger, Confusion

Memory Loss, Lack of Concentration

Nausea/Vomiting

Joint and Muscle Aches

Anemia

Weight Loss

Leaky Gut

SIBO:

Bloating, Pain, Cramps, Constipation, Diarrhea

Asthma

Fatigue

Eczema, rashes

Autism, Depression

Heartburn, Nausea

Joint Pain

Anemia

Weight Loss

Fatty stools

 

 

LEAKY GUT:

Digestive Issues (gas, bloating, diarrhea, IBS)

Allergies/Asthma

Chronic Fatigue

Skin Issues (acne, rosacea, eczema)

Mood/Mental (Depression, Anxiety, ADD, ADHD)

Auto Immune Diagnosis (Hashimoto's, Celiac, Psoriasis, Lupus, Rheumatoid Arthritis)

Candida

Food allergies/Intolerances

Hormonal Imbalances (PCOS, PMS)

PARASITES:

Diahrrea, Gas, Bloating, Constipation, IBS, Digestive Issues

Allergies, runny nose

Chronic Fatigue

Irritaion at nose, ears, eyes, anus, rashes, hives, eczema, acne

Fuzzy thinking, Headaches, anxiety, hyperactivity, nervousness

Joint and Muscle Aches

Weight Gain

Candida

Painful Menstruation

 

 

 

 

Sources:

http://www.dentalwellness4u.com/layperson/symptoms.html

http://www.mindbodygreen.com/0-10908/9-signs-you-have-a-leaky-gut.html

http://organicolivia.com/2014/02/24/everyone-has-parasites-part-one-why-how-symptoms-what-you-can-do/

http://www.siboinfo.com/symptoms.htm