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When is Enough, Enough?

28 Aug

One of my best friends lives out of state and struggles with very similar medical issues. Unlike me, she’s lived with some degree of chronic illness since she was a child. We chat on the phone frequently (sometimes multiple times per day!) and keep each other updated regarding the different things we’re trying in order to improve functionality and restore wellness.

Lately, we’ve BOTH been incredibly frustrated at the lack of improvement despite serious overhauls in diet and supplements. I have severely limited my carbohydrate intake in order to squelch the GI issues that my functional MD and nutritionist suspect are related to small bowel bacterial overgrowth. If the little buggers are in there, they aren’t dying fast enough!!

I have achieved marked improvement with my diet overhauls and supplement regimens. Improving my digestion with enzymes, supplements, and HCl has been instrumental in working with my body to restore a state of wellness. Hippocrates said, “All disease begins in the gut” (of course he said it in a much fancier way that certainly made the concept appear novel and sexy), so it boggles my mind that physicians are telling patients “changing your diet won’t help”. How can all of the processed chemicals and foreign substances be GOOD for optimal health?

My friend has reached a point of decision in her healing journey. Food has always made her feel unwell so she has decided to just say “screw it”. To her, there is little point in dealing with the aggravation and frustration of being so limited in her diet when her health continues to decline. I completely understand where she’s coming from. When is enough, enough? When is it time to say, “This is how my body is, let’s accept the reality of the situation and move on“.  For a recovering perfectionist, this is not an easy thing to do. Move on? Give up? Quit?

During the years I struggled with an eating disorder, one of the major hurdles I wrestled with was the fact that the combination of foods my doctors and dietician were telling me to eat made me feel worse – bloated, fatigued, heavy, and every anorexic’s worst nightmare – fat. Recently, my mitochondrial disease specialist said, “I doubt you ever truly had an eating disorder. I think there was more to it.” In hindsight, I suspect he is right on the money. I remember having insatiable cravings for carbs and sweets as young as 12 years old. Not understanding why and feeling powerless to stop my body from this seemingly out-of-control cycle, I started dieting. Food intolerances and gut dysbiosis can cause a wide range of seemingly unrelated and unexplainable symptoms. When you ignore these symptoms – all hell breaks loose. You start to feel out of control and your health deteriorates. A sick GI tract leads to malabsorption and nutrient deficiency which in turn lead to psychological symptoms such as depression, anxiety, worthlessness, and general malaise. Before you know it, you’re sitting in a doctor’s office being labeled as “depressed” or “bipolar” or “just-a-little-stressed-out”. The vicious cycle begins as you start popping the latest and greatest “wonder drug” (or combination of wonder drugs).

Will I ever truly be able to restore my body to wellness? Today is one of those days where I’m not exactly sure. They say that disease rushes in on horseback, but walks out on foot. Maybe I just need to give it more time. Perhaps the lesson to take away from this aspect of healing is that patience is a virtue and putting life “on hold” until wellness is achieved would be quite a waste of an opportunity to enjoy all that is out there.

Crazy Train Part 1

18 Aug

I have a LOT of friends who suffer from mental health problems. From depression, to panic attacks, to bipolar disorder, and even schizophrenia, it seems that the diagnostic rate of mental illness is on the rise. One thing I have always found peculiar about our treatments for mental illness is the fact that we focus so heavily on pharmaceuticals that are meant to correct neurotransmitters. Most people are unaware that the bulk of our neurotransmitters are made in the gut – not in the brain. Psychiatrists and Big Pharma would have you believe otherwise, but if you stop and think about it, you’re putting pills into your GUT in order to correct your brain….hmmmmm.

Babs loved a challenge which is why she took on the “difficult” patients. And why she owned three primitive breed dogs that ran out the door at every chance they got and refused to come when called. I probably should have taken a hint from the dogs.

The downfall of treating mental illness with pharmaceuticals is that many of these drugs come with life altering (and frequently, life THREATENING) side effects and we don’t even understand how most of them even work. Like many with chronic illness, my symptoms originally manifested as psychiatric in nature. If you think my adventures in allopathic medicine with traditional docs are entertaining, just wait until I share THIS gem about one of my psychiatrists (not the one who dismissed me through her secretary over the phone for being “too complex” and leaving me without a referral and no one to manage my medication…yeah, THAT was a good time and I was a MINOR!). This might take a few entries, so grab some popcorn and prepare to go “WTF??!” Yeah. It’s one of THOSE.

Like many young overachievers, I spent a good portion of my adolescence in therapy with … you guessed it … a slew of bogus diagnoses. I was bounced from one therapist to another, dubbed a “complex case” and was actually dismissed from more than one clinic before I was even seen. At the age of 18 I consulted with a psychiatrist who had a reputation of being a pharmaceutical whiz (read: drug pusher) and it wasn’t long before I was doped up on a cocktail of 5 or 6 pills in an effort to treat the side effects left behind from the meds that were treating the symptoms. I was rapidly gaining weight, hungry ALL the time, felt like crap, exhausted, couldn’t concentrate, and on top of all this I was STILL depressed and anxious.

For narrative purposes we’ll refer to this uniquely incompetent psychiatrist as Dr. Nutso. I’d prefer to call him Dr. Lazy Eye, but I’m not one to poke fun at others’ physical limitations, and could the man help that his right eye looked like it was about to fall out of the socket? Talk about awkward though because I swear I’d have a panic attack just thinking about which eye I was supposed to look at while speaking to him.

Anyway, Dr. Nutso came to the conclusion that as a result of sub-standard parenting (his words), I had developed a personality disorder and would be best served under the therapeutic talents of a woman we’ll call  Babs. Babs was supposedly the best of the best at treating youth gone astray and when I told the psychiatrist I was serious about getting well and I asked “whom do you recommend”, he was adamant that Babs was the real deal. I remember the first thought that crossed my mind when she opened her front door to greet me for my first session: “How the hell is this broomstick-thin woman supposed to help me with an eating disorder??”

Turned out, she had an eating disorder of her own (as well as a lot of other problems that she readily shared with patients). Her refrigerator contained NOTHING except for a small collection of Red Bulls and supplements. You might be thinking it’s rather odd for a person to have seen the inside of her therapist’s refrigerator. Well not long after I began seeing her, there was a disagreement among my parents regarding my progress and payment. They were going to stop paying Babs for therapy sessions. So what did Dr. Nutso do? Kicked me out of the clinic. He told me that since my PARENTS clearly weren’t interested in cooperating for the greater good (my wellness), he couldn’t continue to see me as a patient. He then told my nutritionist and Babs that they’d be well-advised to dismiss me too. What??

This wasn’t the first time that Dr. Nutso had dismissed me. When I first began seeing him my psychotherapist at the time was working to have me admitted to an inpatient facility for eating disorders. Dr. Nutso told me I didn’t have an eating disorder, despite the fact that I had been in and out of treatment for one for nearly 6 years at the time. His theory? The “personality disorder” was causing the eating issues and if I treated that, all would be ok. I thought the man was full of it and made arrangements to go inpatient anyway (best decision I EVER made, really) and he kicked me out then too. My therapist at the time called and smoothed things over and all was well. I was back in the fold as the compliant patient. When I returned from inpatient in much better health, he raved about how he was so glad HE suggested it!! (insert raised eyebrows here)

So anyway, Dr. Nutso dismisses me for the second (and final) time because my parents stop paying Babs and refers me to a community mental health clinic. I said “screw it” there was no WAY I was going to be treated at a community mental health clinic after being a psych major and learning about how those patients are treated. In fact, I was beginning to suspect that the cocktail of drugs I was on were the bulk of my problem. Please know that I do NOT advocate doing this, but I stopped ALL of them. I researched how to wean off and tapered off all 6 medications on my own. And I NEVER felt better. The depression lifted, the anxiety dissipated, the brain fog and impaired concentration melted away, and I had more energy! The very pills that were supposed to be helping me had clearly been doing WAY more harm than good. In fact, they were likely poisoning me. Especially since the onset of my mitochondrial disease and central nervous system disorder kicked in not even 6 months later. I don’t think this was a coincidental correlation and sometimes I wish there were a lawsuit (or two…or 6) I could hop on in order to help pay for the enormous expenses I’m incurring trying to undue years of damage.

Fast forward a few months and Babs emailed to tell me that she recognized how badly I wanted to be well and she was willing to help me. We’d “work out” payment through a barter system and I wouldn’t have to worry about the bills. I could make her jewelry, walk her dogs, help her around the house, house-sit for her when she went on trips, help her catch her dogs in the middle of the night (she owned three that would escape and have to be flanked in order to catch them again. It was insanity)…you get the idea. Was there a part of me wondering if this was unethical? HELL yeah, but I silenced that inner voice by telling myself that she was a licensed professional and would never do anything to jeopardize my health and well-being. ::shifty eyes:: Plus, I was the ever-compliant patient and I was willing to do whatever it took to get well again. Even if it meant chasing untrained, Japanese dogs around my therapist’s waterfront neighborhood at 10 o’clock at night…

Immunology 101

29 Apr

What if you could have more energy, less pain, fewer headaches, or even reverse the effects of your chronic illness just by changing the way you ate? Would you do it? Most people find the idea a bit far-fetched and wonder how something like diet could possibly impact such a variety of symptoms and so dramatically, but when you think about how our ancestors ate and how we currently eat, well, it starts to become a bit less hazy.

Our bodies are equipped with various antibodies that may mount defenses based on our exposure to things that we ingest or are exposed to in our environment. When you think about all of the things you’re exposed to on a daily basis, you have to really give your immune system a lot of credit. Pesticides, molds, toxins, artificial flavorings, preservatives, and the list goes on and on. A true allergy to a food or substance is indicated by an elevated level of the IgE antibody for the protein in that substance, but there is another antibody that has been receiving more attention as of late. The IgG antibody is believed to be directly related to what we’ve come to label as “delayed reactions” or “sensitivities”. IgG levels fluctuate based on exposure, and over-exposure combined with a semi-permeable and sick gastrointestinal lining can lead to a state of inflammation in the body as a result of partially digested or whole proteins leaking into the boodstream. Suddenly, you’re run down all the time, experiencing headaches, mood swings, joint pain, stomachaches, depression, and anxiety. Yes, the food you are eating can cause all of these symptoms and more.

A research study conducted by Dr. Drisko et al in 2005 evaluated 20 patients who had been diagnosed with IBS and had been unsuccessfully able to control their symptoms. Every single patient had abnormalities in their IgG levels, particularly to: brewer’s yeast, corn, pork, wheat, and soy. While there is some controversy over what the elevated levels actually mean, many doctors are at least willing to admit that an abnormally high IgG level to a substance is a good indicator that the body needs help fighting something.

Shortly after I started waking up feeling as if I’d been starring in the movie Run Lola Run all night long (good movie, by the way), my GI symptoms got completely out of hand. I was experiencing everything from excruciating pain to cramping, nausea, diarrhea, and because I doubt you want to read about all the details, I’ll stop there. Anyway, my GI doctor suggested a workup for Celiac disease because as crazy as I thought it sounded at the time, I told her that I felt like everything I was eating was making me ill. The clincher came when I began having cyclic panic attacks, so for those of you struggling with anxiety, depression, schizophrenia, or other chronic mental illnesses, I am living proof that changing your diet can play an integral role in alleviating your symptoms. I felt like I was on an adrenaline rollercoaster 24/7 and it became so excruciatingly unbearable that I checked myself into the hospital for a 72 hour hold where they doped me up on Klonopin. The Klonopin caused its own issues over the three short months I was on it, but I was desperate to “beat the panic trick” and worked through Dr. David Carbonell’s book. It was immensely helpful at taking the edge off after the Klonopin was finally out of my system (which was a nightmarish experience that I absolutely never, ever want to relive), but the constant feeling of being “on edge” still lingered.

When my Celiac workup came back negative, my GI doctor suggested a gluten free diet anyway. I spent hours over the next two weeks researching everything I could get my hands on, and I started noticing that a lot of the neurological symptoms of Celiac seemed to fit the ones I had been experiencing. I eliminated gluten from my diet and followed a very, very strict gluten free regimen. For two weeks I felt like I had been hit by not 1 – but 2 – semis. I thought I was dying. I stuck it out, and after about 3 weeks sans gluten, I began to see the light at the end of the tunnel. My anxiety dissipated, I was less tired, in less pain, and my GI symptoms? Vanished. My GI doctor was so thrilled that she paraded no fewer than 3 residents into my exam room at my follow up appointment because she couldn’t believe the transformation. In hindsight, I should have paid more attention to how drastically my body responded to diet therapy, especially when many of my symptoms began creeping back up about 6 months later…

The incidence of gluten intolerance, and even Celiac disease, is growing in the United States and it really comes as no surprise since our commercially

Your standard loaf of bread contains more than 20 ingredients and is highly processed. Many patients with autoimmune diseases, chronic illness, and mental illness consume diets heavily ladened with sugar, preservatives, and mainstay ingredients that may be damaging the GI tract and resulting in food and environmental sensitivities.

manufactured food is satiated with wheat and other gluten-based fillers. By the time the wheat has been harvested and turned into a blue box of mac n cheese or a loaf of Wonder Bread, it’s not even wheat, it’s more like a stripped down synthetic form of the grain with little nutritional value. Unless of course it’s enriched. Because you know, it makes a hell of a lot of sense to strip a whole food of its nutrients and then spray synthetic versions of them back on later (insert eye roll here). Our country’s commercial food system is causing a lot of problems for a lot of people and most of them don’t even realize it. Our bodies were not made to eat the way most of us currently eat and we have not evolved enough to handle most of the processed crap that has become our mainstay

What can you take away from this very much abbreviated immunology lesson? If you have been diagnosed with any sort of “catch-all” syndrome, mental illness, neurological impairment, or you just plain feel like crap all the time, there is a strong possibility that part of your problem is one or many dietary sensitivities. Sometimes the answer is not to throw a pill at a symptom and hope for the best. Sometimes the patient has to do a little (or in my case, a lot) of leg work to get to the bottom of obtaining a better quality of life and wellness. It makes sense to start with the fuel you’re putting into your body. Step back and analyze what sort of “gas” you’re pumping in. This week, I challenge you to take an extra minute to read the packaging on the foods that you’re purchasing and consuming and think about where the ingredients came from. A loaf of bread isn’t what it used to be anymore.

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