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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…

Conspiracy Theory

4 Aug

Big Pharma wants me dead. Ok, so it wants me alive but doped up on medications because a dead patient = $0. No, I’m not crazy, I’m not paranoid, and I’m not schizophrenic (insert off-color joke about how I used to be, but we’re ok now here…), I’m merely frustrated at the reality of my current situation. If you are short on time and would rather skip to the TL;DR (too long; didn’t read) version, I’ll sum it up for you:


It would be cheaper to allow Big Pharma and the insurance company to treat my chronic illness. It would also be deadly.

When I first started overhauling my diet and had my initial consult with the local functional MD and things began looking up, I was ecstatic. I thought, “Why doesn’t EVERYONE do this??” Why can’t other patients with similar chronic illnesses take the time to research and realize that nutrition is a vital part to wellness? It became frustrating reading social media statuses from sick friends who continued to eat processed foods, fast food, sugar, and other crap despite failing health. Now that I’m exactly 4 months into my healing journey, the reality of the situation is crashing down on me and I’m realizing just how twisted our healthcare system really is. The honeymoon phase of, “Wow! I’m feeling better…Could this work?!” has come to an end and I’m learning little by little exactly what I need to do in order to restore my body to a state of wellness, and it is frickin’ EXPENSIVE.

The other day I took the time to calculate exactly how much it is currently costing me in supplements to continue on this journey and the result of my itemization sent me into a whirlwind panic attack for 2 days.

For posterity’s sake, allow me to share said itemization:

  1. Metagenics – Ultra Flora IB – 30 Capsules
    Cost per month: $51.06
  2. Metagenics, Zinlori 75, 60 Tablets
    Cost per month: $21.50
  3. Enzymedica – Digest Gold – 240 capsules
    Cost per month: $27.60
  4. Vital Nutrients Glutamine Powder 8oz. 225 Grams
    Cost per month: $8.14
  5. Designs For Health – Magnesium Malate Chelate 120 tablets [Health and Beauty]
    Cost per month: $6.25
  6. Heritage Store Castor Oil
    Cost per month: $4.67
  7. Enzymedica – CarbGest – 60 Capsules
    Cost per month: $40.80

Totally monthly cost: $160.02

I tried to rationalize stopping some (or all…) of the supplements I’m currently taking and attempted to convince myself that maybe they “aren’t helping that much”, but the truth of the matter is that they are invaluable. My body is in such a state of disarray that it truly needs the extra support I’m giving it right now. I have read up on healing with whole foods and I am implementing as many as possible, but the food budget isn’t any better, especially when my body can tell the difference between organic and conventionally processed chicken (and reacts violently to the later)! I am attempting to take comfort in knowing that it won’t be like this forever, especially with my fiancee on the hunt for a better job in a more specialized field (that will likely result in a cross-country move), but the fact is that I need an overwhelming amount of nutritional and supplemental support right now and it’s impossible to manage the costs on SSDI.

None of the supplements or treatments I have implemented are covered by my insurance because they are deemed “not medically necessary”. My diet is incredibly restricted because it needs to be, but while most on a budget are able to vegetize a few meals per week with rice and beans, I’m SOL because grains and complex starches send my body into insanity. Even the functional MDs I’ve consulted with in the past 4 months have had to be paid entirely out of pocket. Dr. Guru’s consultations alone have been hundreds of dollars and yet she and Dr. L have been the only medical professionals able to help me make any sort of remarkable progress. The number of chronically ill friends who have tried alternative treatments and have made progress is remarkable, but when the money runs out, they go crawling back to Big Pharma and their disease kicks in full-force.

The bottom line is that it’s just not cost-effective for Big Pharma if doctors actually, oh, I don’t know, GET ME WELL! The crazy thing is that it’s costing me under $1K every month to work on healing my body to a state of functional wellness. If I stopped doing everything I’m doing and went back to being “the problem patient”, insurance would be paying for:

  • meds for my neuro issues
  • meds for GI issues
  • ER visits for dehydration and electrolyte imbalance (because of the constant IBS symptoms)
  • ER visits for intense stroke-like episodes that need to be evaluated to make sure THAT isn’t the time I am REALLY stroking out
  • routine CTs/xrays/MRIs
  • tri-monthly bloodwork (and we’re not talking about your run of the mill CMP here)
  • hospitalizations (my most recent hospitalization was upwards of nearly $40K)
  • more meds to treat the symptoms of the underlying metabolic dysfunction that no one could accurately diagnose
  • even more meds to treat the side effects of the meds used to treat the symptoms!

Is anyone else noting the insanity?? How does this even make SENSE? Why would the healthcare system be content paying out hundreds of thousands of dollars per YEAR to KEEP ME SICK when they could advocate a nutritionally-based, comprehensive approach for a FRACTION of that cost? Our society values complex, elusive medical conditions that have no answers. The answer is not more drugs, more procedures, more tests, and more money. The answer lies in understanding how our metabolic pathways function and how we are poisoning our bodies with processed and genetically modified mutant veggies. Why do we think we can put crap into our bodies and expect to live long, healthy lives with the understanding that we can just run to the nearest MD for a pill to throw at any unpleasant symptom that may pop up?

Financially, things would be a hell of a lot easier on me if I let Big Pharma and the insurance company foot the massive bill it would cost to keep me “alive”, but as Dr. Guru pointed out – I would be dead by 30 because my condition was deteriorating THAT rapidly. It is mind-boggling to me that I can know, learn, and understand exactly what my body needs to repair itself so that I can (hopefully) becoming a fully functional, productive member of society again (and scamper off to med school…), but what I need to accomplish this feels so out of reach. The amount of stress this situation causes is surreal and stress is one of my worst enemies! I am learning to resolve that I will simply trust that the best possible solution will work its way out and that in the end, all will be well…including me.

Letters and Numbers

25 Jul

Dr. Guru sent me for some routine blood work a few weeks ago to review at my follow up appointment yesterday. I received a copy of the results in the mail over the weekend and was a bit surprised to see my thyroid levels were quite low, so we spent a good deal of time talking about what the numbers meant. She routinely runs something called a “Reverse T3” when she sends patients for thyroid testing, something that most doctors dismiss as “meaningless”. She explained that the ratio of T3 to Reverse T3 is actually a very important indication as to how much (or how little, in my case) ATP is being generated by the mitochondria. What do we know about my ATP generation? Yeah, it sucks. Imagine my delight when she said we could do something about it!!

“No wonder you feel like crap!” – Dr. Guru

TSH is produced by the pituitary gland and stimulates the thyroid gland to release T4. T4 can’t really do too much on its own so it needs to be converted to the active form of the hormone – T3. Why is T3 important? T3 stimulates and helps to regulate metabolic function and the production of ATP. Low T3 = low ATP = low energy! Dr. Guru explained that it’s not enough to simply test for low T3 levels (and mine are REALLY low), but there is another key player involved – RT3 – or “Reverse” T3. RT3 is an inactive form of T3 that the body will generate if it’s under considerable metabolic stress in order to conserve some energy. RT3 is a receptor antagonist, blocking the receptor sites on the T4 and preventing its conversion. You can think of the production of T3 like driving a car. The T3 is stepping on the gas pedal accelerating the vehicle while the RT3 is applying the brakes. Ideally, you want the ratio of T3 to RT3 to be 12:1. My ratio is 1.47:1, which means that my T3 and RT3 are essentially cancelling each other out and minimal energy is being made. Is it any wonder I’m simply exhausted?? Oddly enough, this is probably one of the only things I’ve been diagnosed with that has a concrete treatment and a solid (well, as solid as you can get in my case!) guarantee that I should start feeling better! I’m pretty excited! Guru wrote me a prescription for T3, liothyronine sodium, to begin using transdermally to help get my T3 levels back up so we can accelerate some of the energy production. The coolest thing is that she thinks this will really help the progress I am making in other areas too.

Speaking of, the dietary changes I made under the guidance of The Paleo Dietician have REALLY helped. I am definitely feeling much, much better than I was a few weeks ago and Dr. Guru loved the advice I was given too. We are having a good deal of trouble stabilizing my weight and making sure I’m getting enough calories eating on such a restricted diet, but in order to help aid my whacked out digestive system, Dr. Guru gave me the go-ahead to supplement with Betaine HCl for awhile (the vegan form made from beet). I can’t *wait* to try it because I can only imagine how wonderful it will be to not feel like food is sitting around f o r e v e r.

So within the past week I have lowered my l-glutamine and stopped my flax seed supplement since I was able to tie it to the chronic rash I was sporting on my chest. My shampoo/body wash (that I LOVED) also had flax oil in it and I guess my body decided it was on flax overload. I made my own shampoo with some homemade coconut milk and castile soap and started using that with an apple cider vinegar rinse. So far so good! OH! And for the past three days I have been trying a 15 minute exercise when I wake up called “Make Over Your Morning” and it is AWESOME! I heard about it on SCD Lifestyle and decided to put my own together. More on that later…


18 Jul

There is a bag of scallops on my head. I wish I could say that this was the next installment of “Notebook Posts” and I had discovered some crazy way to obliterate brain fog, but alas, I smacked my head on the thermostat in the refrigerator earlier and didn’t have an ice pack. I originally grabbed a bag of frozen beans and collapsed onto the kitchen floor in tears. (It’s just been THAT kind of day.) Then I decided that if I was going to feel sorry for myself and wince in pain, I might as well defrost dinner in the process…hence the scallops.

I have no idea WHAT my body is doing right now but I’m not enjoying it. A huge part of me thinks that it might be stress-related. I admittedly have not done any yoga for the past 3 days (*gulp*) and really need to get back to doing that because it keeps me quasi-sane. Food is a mess again and I have no idea why, but I am suspecting that perhaps the gut flora is waaaay out of whack at the moment. In my quest for some sort of answer, I stumbled upon Aglaee Jacob’s blog “A Dietician Gone Paleo” and decided to drop her an email. She was absolutely wonderful at answering my questions and offering some feedback as to what I could be trying to take my healing to the next level. I am so grateful that she took the time to chat with me and I’d actually like to keep her on my team since I have had terrible luck with nutritionists locally. One thing that Aglaee recommended is that I get my fat intake waaaay up. This has proven to be more of a mental issue than anything because it’s drilled into our heads from an early age that “FAT = BAD”, but I need to get my calories up because my weight is still dropping and Aunt Flow is on hiatus. These are NOT good things!

I have been strictly adhering to the rotation diet for the most part, but after speaking with Aglaee, I have decided to adopt her SIBO/FODMAP protocol for awhile (while rotating) to see if that helps. The point of this diet is to limit the amount of complex starches and carbs that go in so the body has an easier time breaking things down. I am strongly considered trying an HCl supplement since I feel that my stomach acid levels are non-existent at the moment.

As of now, my fatigue, pain, inflammation, neuro issues, and overall mood are way crappy. I’m trying to keep things as simple as possible right now. Cooking my fruit, cooking veggies, 2-4 TBSP of fat with EVERY meal (this is a challenge for me!), and increasing my protein. I am still on my mito cocktail, zinc, magnesium malate (although I have been cutting that in half), l-glutamine, and 2 TBSP ground flax seed daily along with a probiotic (60 billion). I am suspecting that the probiotic has worn its welcome and is no longer helping and I also think that the flax seed might be doing more harm than good since it definitely doesn’t seem to be benefiting me at all. Oh yeah, and I forgot about the castor oil packs. My PCP tried to cough over a laugh when I told him I was going to do those. I worked up to an hour a day and I don’t know that it’s helping anything, but it’s definitely not hurting me so I’ll keep at it for awhile longer.
A few of my friends (and my therapist *sigh*) have pointed out that I may be making way too many changes in too short of a time. When I stop and I think, I really have juggled a lot of things around recently and perhaps I need to settle into things for awhile before over-zealously jumping on to the next thing. I think I might take out the flax since I do feel that is bothering me, but keep all else the same for now with the possible addition of the HCl supplements. (Did anyone else pick up on the fact that I just committed to no more changes and then talked about more changes I’d be making?? I swear there has to be a support group for people like me somewhere…) I see Dr. Guru for a follow up next week and I wish it were sooner. I am feeling so overwhelmed and discouraged with this set back. It makes me feel like I will simply never get to the bottom of this. There are just too many paths to explore and too much research to digest, and not to mention the extraordinary cost of supplements that holistic practitioners tell you you *need* in order to heal. I need to work on my digestion and gut because if I don’t, anything I take will just be flushed down the toilet (haha, I made a joke and didn’t realize it!).

For now, I have been listening to this song on repeat because it’s fun, I enjoy it, and it is totally where I’m at right now:

Listen HERE.

Written by: Charlotte Kendrick
I wrote no more judgment, no guilt, no fear
And then folded them up in a note
Threw it on the fire on the eve of New Years
And said goodbye to the rising smoke

I wrote that note with the simple hope
That by putting it all out there
I could let go of the voice that says ‘no’
There’s no way you will ever compare

Take a minute, take an easy step back
There’s no secret password, no code to crack
It’s not a race or a contest, but if you’re still keeping score
You will always have less, they will always have more

We all can get caught up in our half empty cups
In all the little things that seem to go wrong
Your dog pees on the oriental, you can’t rent your rental
And it’s been three months since you wrote a song

Soon it’s all about you, all the errands to do
All your flaws you wish that you could improve
Like the way you wear makeup, the mood you’re in when you wake up
How when you’re nervous, you never keep your cool

Take a minute, take an easy step back
Look at all that you have and the time that you lack
It’s not a race or a contest, but if you’re still keeping score
You will always have less, they will always have more

Your eyes are all red, you’ve got the blues in your head
You look around but can’t find your halo
So you stay up too late watching TV you hate
And fall asleep on the couch wrapped in yellow

Take a minute, take an easy step back
There’s no secret password, no code to crack
It’s not a race or a contest, but if you’re still keeping score
You will always have less, they will always have more

How many doctors does it take?

22 Apr

Because when we don’t know what’s wrong, we just blame the patient.

I grew up in a medical family and became accustomed to medical jargon at a very young age. You have pink eye? What? Oh! You mean conjunctivitis! I watched my dad study for exams and followed him around the hospital on days off and weekends while he saw patients. I watched how he interacted with them:  politely, professionally, listening, and taking notes about whatever brought them in. I became jaded as a result of this experience assuming all doctors treated their patients like people.

And then I met Dr. B.

My first glimpse into what constituted your average, run-of-the-mill physician began in the winter of 2008 with a neurology consult to figure out what, exactly, was going on with the strange symptoms I was having. I remember thinking I had some sort of communicable disease that I was unaware of because the man couldn’t have been any less personable. He practically climbed over me to sulk into the corner as far away from me as possible. Without ordering any imaging or tests, he prescribed a calcium channel blocker and a triptan, citing “Bickerstaff Syndrome”, a rare migraine disorder, as the cause of my discomfort. I did well for a few months and then the episodes started picking up again, only this time with greater force. I was losing my balance, falling, and feeling generally out of touch with reality during them. I went back and explained the problem hoping we could try a different medication. Instead, he told me I was to blame. “You need a psychiatrist,” he said, “you’re depressed, anxious, and dissociative.” Wait… What? I glanced around the room wondering when he had suddenly morphed into a qualified psychiatrist. That’s right, I’m so depressed I’m falling to the floor! I left that appointment humiliated and when I recounted the conversation to my PCP shortly after, he put a phone call in to the neurologist to let him know he was an asshole (ok, so I may be paraphrasing a bit here) and he referred me to another. Dr. H, or should I say his PA because I only ever saw him once during a 2 year period, really wasn’t any better, but at least neither of them blamed me when they had no idea what was going on.

Unfortunately, my experience with Dr. B wasn’t isolated. In late 2008, I began feeling incredibly run down. The fatigue was overwhelming, but the strange thing was that I was waking up feeling as if I’d run a marathon. Remember that mile run you had to do for gym class as a kid every year? I would wake up feeling like I had done one of those without stretching properly. My PCP realized something was definitely up, but since I was due to have the “magic birthday” (the one where you get booted off your parents’ health insurance), I was forced to find another. Reader take note, when a crisis hits, it will serve you well to have an established relationship with a PCP!

First there was Dr. M who thought I might have MS. When that didn’t seem to fit, she diagnosed me with possible “fibromyalgia”. After her clinic nurse and staff made a huge clerical error with my medical history, I sought help elsewhere.

Unfortunately, Dr. K was no better. She flat out called me a liar and told me no young person develops such a complex myriad of symptoms overnight. Wanna bet? When I called her office after a 3 day bought with terrible constipation and GI pain, she refused to write a prescription for an anti-spasmodic until I could see a GI doctor. Guess when the GI doctor’s next available appointment was? Let’s just say I’d need to poop WAY before then…As Donald Trump would say, “Dr. K, you’re FIRED!”

Fortunately, I was finally able to settle into the office of a more competent and understanding PCP, but he wasn’t exactly skilled in the micro-managing department. I had to learn to self-advocate, which probably wasn’t a bad thing, but I often wonder if we could have solved the mystery had we dug a bit deeper, sooner. Regardless, this PCP loved to refer out because nearly everything was “not really [his] thing”. He also loved to blame everything on anxiety. He had this unusual intonation when he’d make the suggestion too. I’d be allowed to talk for about 15 seconds before he’d interrupt to ask questions and then state, “It sounnnnnds like anx-EYE-ity”. *sigh*

I became quite skilled over the years at screening my team for potential idiots, so a recent experience caught me rather off guard. Last month I was able to get back in to see my former (wonderful!) PCP and without missing a beat, he referred me to see a new GI doctor because supposedly, he liked to “think outside the box”. Now granted, my case is complicated, and I know that. What I didn’t know was that I had been scheduled to see the physician’s assistant (PA), because if I had known, well, I would have canceled the appointment! My PCP’s office was trying to be helpful and scheduled the appointment on my behalf, and unfortunately I didn’t know what was going on until I was sitting in the exam room.

Generally, PA’s tend to subscribe to their assigned physician’s line of thinking, so I settled into my chair and hoped for the best. Guess I didn’t hope hard enough because this girl had to have been fresh out of school and was as green as the balled up dollar bill crumpled in my jean pocket. She looked at me and said, “Hasn’t anyone diagnosed you with IBS? Because that’s what you have.” Really? I had seen three GI specialists, had multiple tests over the course of 4 years and I need a PA to tell me I have IBS? Apparently, she missed the memo that IBS = I Be Stumped.

When I declined the offer for the colonoscopy and medication (because who says, “Oh yes, I’d love to have you stick a camera up my butt, look around, and give me dangerous anesthesia in the process!”) and explained I wanted to find the cause of my symptoms, she said, “We don’t do that here.” Um, I’m sorry. What, exactly, don’t you do? “We don’t find causes. We do butt-cameras, pass out pills, and get people feeling better. We aren’t in the business of analyzing diets and we aren’t in the business of finding causes.” (Again, I’m slightly paraphrasing, but the scary part is only SLIGHTLY!). We chat a bit more, she criticizes me for following an “over-the-top” diet, rolls her eyes when I explain the diagnosis of leaky gut from Dr. A, and tells me there’s nothing wrong with my pancreas, so I shouldn’t be on digestive enzymes.

I felt my temper rising and my irritation beginning to boil over because I hadn’t dealt with this level of closed-mindedness in quite a long time. Sensing my irritation, she asked, “Do you want to schedule a butt photography session with the doctor?” I looked at her and said, “If the doctor subscribes to the same train of thought regarding patient care that you do, I have no interest in returning to this office.” I asked for my medical history forms back, apologized for wasting her time, and left. Sometimes, you just have to know when to walk away. And when to call the office manager. This was a time for both.

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controlling IBS, SIBO, food intolerance and PCOS by eating real food