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Enough is enough

Posted Oct 02 2012 10:06pm

For months now I've contemplated whether I should write this post. And for months, I've crammed the thought back into the recesses of my brain and decided to just move forward with as much positive attitude as possible. But today, a friend shared a video link on Facebook of a news anchor calling out a bully on live television and at the bottom of the video's page is a link to a blog called The Fat Nutritionist . And after watching and reading, I've chosen to write this post.

Not everything went away
Before my January 2011 surgery, amongst my other issues I could feel a large lump on the right side of my rib cage. The size would fluctuate up and down, but it was always firm and at least the size of my palm when I palpated it. I assumed that it was digestive related because I would burp after pressing on it. I figured it would go away once my digestive tract was all surgically "unstuck" (for want of a better term) and could flow freely after I'd gone through the post-op healing process.

A year post-surgery, the lump was still there. In the spring of 2012, the same symptoms I'd had prior to my surgery began occurring again. I burped a lot even on an empty stomach and antacids didn't provide any relief. By late spring, I was miserable with pressure and bloating that seemed to center around my stomach and right side of my rib cage. I decided I had to do what I was dreading and find a general practitioner. Hubby needed one too.

Finding a doctor--strike one
We decided to make appointments with a local practitioner that is both an OB/GYN and family practice doc. He came highly recommended by friends from our church congregation. It seemed like it would be a good fit considering his background and the complexities of being a long-term endometriosis sufferer that now has to deal with non-gynecological repercussions from living with the disease for so long ( click here to read more about Multi-System Disease ).

Prior to my appointment, I was very thorough in providing all my surgical records and my medical history to the new doc's office staff via email as requested. I wanted this doc to be fully informed before I landed in his exam room. I know my case is complex and I never want to blindside anyone.

In mid-June when the appointment day finally came, we went to the office. I was taken aback to find his waiting room full of advertisements for various doctor-prescribed treatments like expensive sunscreen and botox treatments. Why would a family practitioner be giving botox injections? In the pre-appointment screening room where patients' vitals are taken I found more advertising posters and the like. I was uncomfortable.

When the doc came in to interview the two of us, I was dismayed to discover that his office staff had not even opened the emails containing the pre-appointment paperwork I had been asked to fill out let alone print them for the doctor to review. So the doc had no idea of my pre-existing conditions or complex medical history. This made me even more uncomfortable.

He introduced himself and began scanning my vitals that had just been taken by his medical assistant as well as the brief form I'd filled out in the waiting room to make up for the "missing" forms I'd already filled out and sent via email. I made a point of mentioning that he was supposed to have a copy of my medical history prior to our appointment so he could review it because it was complex. He nodded and asked for a brief explanation of my history. He scratched down notes while I spoke.

Then he looked up from his papers and said, "Have you ever discussed the option of gastric bypass surgery with any of your previous doctors?"

I was stunned.

I proceeded to get very terse and told him a) I was morally against having the procedure for myself; b) I had been firmly instructed by a highly competent psychiatrist that under no circumstances should I ever be considered for the procedure given my history with eating disorders (which I had documented clearly on the pre-appointment paperwork he never received); and c) given my recent surgery to repair significant damage to my digestive tract, I didn't think it was wise to mess with it again particularly since I was currently in significant discomfort in that region.

I thought that would suffice and he would move on. But it didn't. Instead, he proceeded to talk to me (more like lecture me) for 10-15 more minutes trying to convince me to go through the pre-screening process for the surgery with our local hospital system. In the course of those infuriating 10-15 minutes, he revealed that he himself had recently lost almost 75 pounds in less than a year on the HCG diet (a highly controversial calorie-restricted diet). Huge red flags started going up for me.

I sat as patiently as I could as he interviewed Hubby. Not once did the doc mention that Hubby should consider gastric bypass surgery. He didn't even mention his weight at all.

By the time we walked out to the reception desk to pay our co-pay, I was steaming. The last straw was when I noticed a sticky note hanging next to the computer the staff member was working on. It noted how much a 30 day supply of HCG cost so she would know how much to charge a patient.

The aftermath of discrimination
When we got back to the car, I cried tears of anger. I felt victimized, belittled, and confused. Questions raced through my head
"Will I ever find a doctor who won't discriminate against me because of my weight?"  
"How many more times will I have to hear a doctor suggest gastric bypass surgery?" (that doc had brought my total count to 4 in the last 10 years) 
"Will I ever receive adequate medical care as an obese patient with anorexic eating habits?" 
"What am I going to do about the lump under my rib cage and the constant bloating and discomfort?" 
"Do I just not eat anything anymore from now on and go on a liquid diet as if I've had gastric bypass surgery?" 
"Do I just go ahead and lie my way through the pre-screening process for gastric bypass surgery and then have the surgery just to prove to everyone that it won't work?"

I was in a very dark place. I wanted to crawl into a hole and never come out. I felt disgusting, unacceptable and repulsive. I questioned whether I should ever go out into public again.

Hubby's loving kindness was the only thing that pulled me through.

Yelp to the rescue--doctor number two
Together we scoured reviews on for other doctors within a 30 miles radius that might be good candidates so I could at least have someone maintaining my prescription medications that treat my fibromyalgia. I literally need the meds to function or my body attacks itself with it's own toxins. If I didn't need the meds to survive, I would have gone off my meds long ago (I've already tried unsuccessfully) just so I'd never have to encounter another doctor again.

We made an appointment with a promising prospective practitioner for the following week and went through the gyrations of providing my complex medical history to the doctor prior to being seen. On the initial visit, he was kind and courteous. My weight was never mentioned once. It's a good thing too because I had privately vowed to get up and walk out if he did. He agreed to take over my meds and wanted me to get a full blood work-up to find out what was going on.

Landing in the ER
The next day, I woke up feeling nauseated and dizzy with an electric shock sort of pain zapping me every so often under my right collarbone. I tried to tough it out to attend a dentist appointment to get my teeth cleaned in the afternoon. By mid afternoon sitting in the dentist office waiting room, I was suffering from chills and sweats and shaking profusely. Hubby raced me to our new doctor before the office closed for the weekend. I was given an EKG in the office to rule out a heart attack. Then the doc strongly encouraged me to go directly to the ER. I wheedled and pled with him asking if it was really necessary. After the third or fourth time he told me "I strongly encourage you to go to the ER," Hubby told me it was no longer optional and we were going. We drove directly to the best medical facility in our area and spent the rest of the evening in the ER with the docs running tests on me, x-raying me and giving my chest and abdomen a very thorough ultrasound. To my surprise, not one of the ER staff mentioned my weight or made me feel like I was anything but just a patient with an urgent medical need. I was impressed and relieved.

The Diagnosis
Just before midnight, a very kind ER doc informed me that my heart was fine and everything looked normal except the ultrasound had revealed that my liver was enlarged. That was what the lump on my right side was--my liver! It was so enlarged that it was pressing on my stomach causing the bloating, burping and discomfort. My liver was also pressing on a nerve that was sending those pains up toward my collarbone. Essentially, I was diagnosed with non-alcoholic fatty liver disease (NAFLD).

"Knowing is half the battle"
Once I had a diagnosis in my grubby little hands, I could work with something... FINALLY! I immediately went to the Mayo Clinic website to read everything they had to say and find out what causes NAFLD.

Imagine my shock and rage when I found the following on the list of conditions that can increase ones' risk for NAFLD
  • Gastric bypass surgery
  • Malnutrition 
  • Rapid weight loss
Only NINE DAYS after seeing the doctor that lectured me on how important it was for me to get gastric bypass surgery, I was in the ER with severe complications from an enlarged liver that would have been compromised even more by the very treatment he was advocating! And his own method of losing weight, the HCG diet, would have been just as detrimental (if not worse) to my liver!

It turns out that NAFLD can also be caused by chronic conditions like metabolic syndrome. In my case, my entire endocrine and metabolic system is compromised from being a long-term sufferer of Stage 4 endometriosis. It's called Multi-System Disease (MSD).

But apparently there is a large contingent of doctors out there that think everything hinges on how much food a person consumes. And if a person eats less, then that has to be better, right? WRONG!

Final thoughts
I've seen size prejudice and discrimination come from the obese as well as the skinny. Some of the worst cases of discrimination come from formerly obese individuals that become evangelicals thinking that everyone else should do as they have done and "just lose the weight!" and do it the way they did. I've now personally witnessed one of the worst cases where one of those evangelicals is also a medical professional (I hesitate to even use that term given my experience). 

If medical professionals are jumping on the misinformation bandwagon then how are people like me getting proper medical care?  The bottom line is we probably aren't. 

I would guess that thousands of people in my age group in the U.S. have been through the same lifetime experience I have. 

We were raised on margarine instead of butter because medical experts said butter was bad for you. But the margarine filled our bodies with hydrogenated oils that is now known to cause cells to be insulin resistant (and science wonders why there's an epidemic of Type 2 diabetes in this country). ( Click here to read more

When our weight didn't match the standardized height and weight charts being published and sent to everyone from our P.E. teachers to our doctors, we were told that an all-protein diet was the best solution to lose weight and do it quickly. So we did that too and became deficient in important vitamins that can only be derived from food and not a pill. 

We were told to avoid all fat so we removed even healthy fats like olive oil and nuts from our diets and thought we were being so "good" when we were really starving our bodies of Omegas 3, 6 and 9. 

We learned that carbs are "bad" and especially any wheat-based carb (nasty, nasty carbs). So we stopped including those in our diets and lives. The result? A complex-carb starved body doesn't have the food needed to easily produce neurotransmitters like serotonin (the essential neurotransmitter for your body to regulate mood, digestion, breathing and the heart). No wonder we live in a society of road rage, depression and anxiety. 

We were told that everything hinged on what we put in our mouths. We believed that the government was ensuring our food was safe and healthy for us even though starting in the early 1990s, unbeknownst to the public, the controls over the American food supply began to be loosened so that chemicals, pesticides and other harmful toxins were legally entering our food supply without our knowledge. "Wholesome" foods like a tall glass of cool milk, fresh corn-on-the-cob (buttered or not) and the apples in Mom's apple pie weren't so "wholesome" anymore ( click here to learn more ). You can thank corporate lobbyists with deep pockets for this.

Frankly, I've had enough! I will not tolerate being told that all my problems are because I'm fat. All my problems are because I was afraid of getting fat.  I just should have ignored everybody and eaten a Mediterranean diet like the Italians. I'd be slightly plump with an extra 10-15 pounds (maybe even 20), but I'd be sporting a healthy liver right now. 

And I vow one last thing... I refuse to be told one more time that I should consider gastric bypass surgery. Future doctors beware.

Postscript: The reason why I went for over 25 years with undiagnosed endometriosis that raged through my body until it was at the worst level (stage 4) was because of medical professionals who ignored my pleas that something was wrong with me. Instead, I was told that it was normal "women stuff" and/or that I really needed to focus on losing weight. Discrimination against my size resulted in my quality of life being destroyed by an insidious disease for decades. I can't get those years back. And I can't glean from life what I should be right now because of being saddled with the aftermath of issues I face. But if my story can help others to not lose years of a quality life, that can somehow make up for it. 

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