FatGirl vs World

There's a much bigger post that I should be writing...but I'm just not there yet.
All I'm really able to say is that chronic pain/chronic illness are tenacious beasts.

It's kinda like swimming in the ocean and a large wave comes out of nowhere.  Sure, you're able to right yourself and get your head back above the surface the first time, but each subsequent wave takes a little out of you.  It makes the struggle a little harder.

Sometimes, you get your head above water and take a really big breath and just let the next few waves go over you. It's easier than fighting every single wave. It isn't resignation, it's conservation.  While you're under, there's some peace in floating and of being submerged.

But you have to get your head back above water and either you need a plan or you need help. Sometimes you need a bit of both.


I am okay.
I'm a strong swimmer.
I'm a bit stubborn.
But I'm not alone.
♡

My lower spine issues started when I was in HS (1997):  A beefy linebacker bodychecked me into a wall during an game of speedball in gym class.  I was walking around bent over for a week.  But I didn't go to the doctor.

In 2000, I was in my forensic anthropology class at the Smithsonian Museum of Natural History.  I was bent over a lab table examining specimens and just couldn't stand up straight.  I went right to the GWU ER.  They took x-rays, gave me pain medication and NSAIDs, and sent me for followups with a specialist.  That specialist (older male, I forget if he was ortho/neuro) asked me if I was having "too much rough sex."  I shit you not. He sent me home with a pamphlet of old people having sex.

In 2006, I went to a ortho because I was experiencing pain/numbness when I was sitting.  This is also when I noticed how my hip would click.  They did an x-ray and they diagnosed me with a generic "lumbar strain" and "bursitis in hip." But I was also told that the pain was from being overweight/weak and that I should go to PT and lose weight.

In March 2007, I was at a Flogging Molly concert (Shamrockfest!) and the guy behind me lost his footing, grabbed my waist to stop himself from falling, but he ended up pulling me down and about 7-8 other people landed on me.  Instead of going back to the dismissive ortho from 2006, I went to a chiropractor.  This was the first time a doctor took a detailed medical history, family history, and the first time any doctor prescribed an MRI (10 years after the initial injury!).

This was a little before radiologists would load scans on to a CD -- so they sent me back to the chiropractor with a large folder of all the scans.  He puts them up to the light and within seconds says "This. This right here is why you're in pain," as he's pointing to the three blackened discs on the scan, "Oh, and when did you break your tailbone?" (During middle school, my band teacher managed to push me off a riser/off my chair, and I landed hard on my tailbone.  I had to sit on a pillow for weeks, but my parents didn't take me to the doctor.) The chiropractor then went on to explain disc morphology and what the MRI meant. Not only were the discs bulging, but they were deteriorating.

Ice. Oral steroids. Physical therapy. Epidural steroids. More PT.
But, I needed bigger guns than a chiropractor.

In June 2007, I went to a spine surgeon with my scans to get his appraisal.  This is when I was told two things:  (1) that i'd need a fusion and (2) that I needed to wait because anytime you operate on the spine, you could make things worse.

Followed up in December 2010, but that same doctor was a bit dismissive.  He said I was doing well managing the injury, but that he didn't want to see me until I was in a wheelchair.  That was a bitter pill to swallow.  As I once wrote in this blog, "It's hard trying to live in the shadow of that comment – it's like playing Russian Roulette.  'The Big One' (i.e., the incident that puts me in a wheelchair) could be from doing some crazy activity or from sneezing and anything in-between.  That thought has not liberated me to go balls to the wall; it has paralyzed me to the point that I might as well be in a wheelchair."

Mid-2011 was when my then-boyfriend damn near made me a quadriplegic by pulling my ponytail too hard/the wrong way.  We tried all the same conservative treatments to no avail:  Ice. Oral steroids. Physical therapy. Epidural steroids. More PT. But the pain and weakness in my arm never went away.  By September 2012, I knew I couldn't continue with exercise or boxing.  I got referrals to specialists, got a second opinions.

On December 2012, I had my C5-C6 artificial disc replacement.

All was pretty good until May 2014.  I was in the shower and lost feeling to my leg.  I went to GW ER and the attending doctor wanted to give me drugs and get me out of there.  I kept insisting that something was very wrong.  Luckily, I had my surgeon's email address and I reached out to him, saying that I was in the ER and something was wrong.  Five minutes later, the ortho resident on call was admitting me.  (Blog post, "He's got my back") We did another MRI and discovered that during the fall, I managed to displace a vertebrae (retrolisthesis) when I hit the side of the tub. The rest of 2014 was pain management.

In 2015, I got the worst diagnostic test EVER.  The discogram had me screaming in pain for 30 minutes and didn't produce the intended data because I couldn't differentiate where the pain was coming from while my whole lower back was spasming.  I will never do that test again and I'll slap a doctor if they recommend it to me. (Blog post, "Testing My Limits") We scheduled my surgery for May 4, 2015 ("May the 4th be with me") but when my doctor's scheduler called to reschedule, I was feeling good.  I told them I'd call them when I was ready.

July 15, 2016 was my L5-S1 surgery.  We had originally hoped to do another artificial disc, but by that time, the herniation was pretty complete, I was bone-on-bone, and the facet (the large, flat surface of the vertebrae) had advanced arthritis.  This meant that my only choice was to do a fusion. Yay! More metal in my body!


Recovery after my fusion surgery took a long time, and by the time my back was feeling better, my feet were feeling worse.  2017 and 2018 were all about my foot surgeries (3 of them -- Left foot plantar fasciotomy/heel spur removal, right foot plantar fasciotomy/heel spur removal, right foot ankle stabilization (from having my feet run over).


So all of that is the "Rehash" part of my blog entry.  What do I mean by "revolution?"

The U.S. healthcare system fails in so many ways.  But I want to talk about one way in particular:  we lack universal electronic health records ("EHRs"). (To answer your knee-jerk reaction -- countries that have EHRs tend to have better privacy technology).

My spine surgeon moved practice twice since I first saw him in 2012.  Unfortunately, this means that my medical records are in many different places (the different practices, the different radiologists, etc.).  Instead of my files traveling with my doctor (or better yet -- BELONGING TO ME), they've remained with each practice. This means that when I hurt my back last week and called to get an appointment with my doctor, they had no record of me ever being his patient.  **headtilt**

So I'm in pain and I'm now trying to re-constitute a medical file for my surgeon by contacting all of his old practices, the hospitals where I had surgery, and the radiologists that did my MRIs/other diagnostics.  I'm lucky that (1) I've kept a timeline of events, and (2) I've kept as many documents as possible in an annotated file.  But I can only how much someone would be screwed if they were starting from scratch.

The lack of EHRs slows down medical care.  It reduces coordination and collaboration.  It prevents patients from getting adequate healthcare, and it puts an unnecessary burden on people that don't have the spoons to deal with this kind of bullshit.

  

A week ago, the plastic surgeon that did my abdominoplasty consult said a few things that rubbed me the wrong way.  Some of those things were just hard truths ("It's going to be harder to lose weight at 37 than it was at 30."  UGH!!), some were things based on his experience and not just me ("I find it's better to do the surgery after the weight loss because people are more inclined to keep the weight off when they are pleased with what they see in the mirror."), and two things in particular just annoyed me and I want to address.

Does this mean that I don't like the doctor?  Hardly.  I like him and his staff but these are things near and dear to my heart and register as pet peeves. 

1.  Fat People Must Have Shitty Self Esteems

I have my moments of looking at myself and being frustrated with what I see in the mirror.  Not because what I see looks bad, but because I know that's not me 100% of the time from every angle. I close my eyes and envision some sexy minx in an ornate floor length mirror who then slinks her way across the room draped in a Catherine D'Lish gown. I envision stepping over the torn letters of desperate suitors that have been rejected from consideration. At the door is a delivery man with champagne, roses, and a kitten with a very large bow.

The only time I realize the error of my fantasy is when someone tries to shake me out of it by pointing out that I'm not that person.  If no one points it out, then I'm happily oblivious that I might not be every man's fantasy, that women want to be me and be my bff, and that I can speak to all the tiny creatures of the world.

Okay, all kidding aside -- I know what he meant.  Most people don't seek out plastic surgery because they're in love with their body as is.  BUT I'd like to think the only reason why I fight so hard for my health and my body (all 5 orthopedic surgeries, all my "day one" start overs), is because I'm delusionally in love with my body as it is now and as I know it can be.  The only way I know how to do this is through love.  I can't heal my injuries, I can't lose the weight, I can't even consider surgery from a place of shame or hatred.  It's just not me. 

When I see the bits and pieces that I don't like, I am reminded of how I got them.  It's like after each trauma, someone gave me the physical weight as a way to display to the world my actual emotional weight.  I don't carry the emotional baggage anymore (just a few postcards), and I'd rather not carry the physical weight either. 

But please trust that I'm pleased with what I see in the mirror. 
Maybe a little too much.

2.  "People Usually Lose Weight After a Celiac Diagnosis"

(Disclaimer:  I'm not a doctor or scientist, just a nerd)

Let's cover some basics first: 
Gluten Intolerance/Sensitivity: inflammatory reaction
Celiac Disease:  auto-immune reaction
Wheat Allergy:  not the same as Celiac Disease, and can sometimes present as an anaphylactic reaction.
Gluten Free Diet:  dietary choice OR dietary necessity
Gluten Free Item:  reliance on manufacturer labeling and testing; no international standard (but many place it at under 20 parts per million)
Celiac Safe Item:  ideally 0 parts per million (and for many this means cross-contamination is still an issue)

There are two types of people with Celiac Disease:  people that have had the disease since birth (and presented as "failure to thrive" -- abdominal distention, bloating, not growing or gaining weight) and people who have been diagnosed later in life (on average it takes 6-10 years to get a diagnosis, but I hope with awareness that it's getting better -- diarrhea, abdominal pain, vitamin malabsorption, skin issues, etc.). 

When you are diagnosed with Celiac Disease, you CANNOT eat any glutenin or gliadin.  No amount of wheat/barley/rye is safe.  And for some people who are cross-reactive, no dairy or oats either (the proteins are similar, body makes an identification error and floods body with antibodies). There are no "cheat meals," for someone that has Celiac Disease

Once upon a time, there were no gluten free or Celiac safe analogs for things like bread, pasta, cookies, pizza dough, etc.  So you just had to avoid eating those things.  By nature of excluding whole food groups, people would lose weight.  And it wasn't always cause they wanted to -- remember, they've been sick for a long time and just want to eat and not feel gross.  And believe me, you cannot easily eat that many fruit and vegetables to replace the calories delicious fluffy croissants could give you.

But now.... there are analogs.  And quite often they are not nearly as delicious as what they're trying to mimic. Quite often, the solution is to add fat and sugar to gluten free items to make them taste better. Instead of wheat pasta, you're now eating corn/rice pasta.  You're not bypassing all of those calories in your diet. 

And because you're not sick (though it can take a long time for some people to get past the symptoms, and years for your body to repair the physical damage), newly diagnosed people with Celiac Disease are often really excited (but cautious) to eat, now that they know not everything will end up with them white-knuckling their knees while they use the loo.

So that's why people with Celiac Disease do not automatically lose weight after their diagnosis.  Because they know what they can eat without getting sick AND there are options!  At some point the euphoria wears off, and you stop wanting to try all the new analogs, and your weight may or may not be an issue.

As promised in my last blog entry -- a few lists in relation to my experience between 2009 and 2010 ("the first time around" "the second time around") (and I am sure that I'll be adding to these lists the more I think about it):

Hi.

My name is Robby.  I'm 37.  I've been overweight since I was 8 years old (first trauma: witnessing my Nana die at 8; second trauma: losing my Mom at 13 -- the story is here).

My highest adult weight was 240(ish) pounds (109kg) from the age of 16 until 21 or 22.  My lowest adult weight was 188 (November 2010 -- to fit in a bridesmaids dress) (photos here)

In the 8+ years since then, I've had 5 ortho surgeries (neck artificial disc in 2012, lower spine fusion in 2016, plantar fasciotomies and heel spur removals in 2017 and 2018, and ankle stabilization/modified Brostrom procedure in 2018).  I was also diagnosed with Celiac Disease in April/May of 2016.

For those who have been with me a long time, you already know all/many of these details.  Sometimes it's really hard to package up my life time in a quick blurb of "how did I arrive at this moment" to people that need to understand all/a little of that to understand who I am, how I am, and why I am certain ways. I know I'm not unique in this. We are all the sum of our stories -- the current and past drafts -- as well as what is still to be written.

And yet, standing in front of him with a paper gown on, I felt like I needed him to understand something:  I wasn't looking to take the easy way out.  I felt even terrible for thinking it.  This isn't easy for anyone. I needed him to see past the fat suit and to see me.  I needed him to see the fighter underneath it all, not a person conceding defeat of any sort.


This Friday, I had an appointment with a plastic surgeon to discuss my body -- the things I want to address surgically and what I need to do to be a good candidate for surgery (mainly abdominoplasty with a little liposuction contouring).

I've been wrestling with myself about whether I wanted to talk about this or not, or if I was somehow betraying my core philosophies on some level.  It's really hard to  kinda be known for (here, here) as someone who is unabashedly (and sometimes delusionally) going to love herself and defend herself/her body against all attacks from the outside world to then walk into a plastic surgery center.

In the end I realized a few things:  (1) I'm human and am allowed to be curious; (2) body positivity and plastic surgery need not be polar opposites, but I need to know my motivation; and (3) I've always tried to be honest here.

(1) I wanted to know a few things:  When I got down to 188, my lower abdomen didn't change that much and was that just resistant/skin/a lost cause?  Could we address the L5-S1 scar on my lower abdomen that's very visible? Could they help give me stronger abs (correcting diastasis from obesity and surgery), which in turn will help me get more stable years out of my back?  Is the fatty deposit between my boobs a morphological issue or just a weird place to store some bodyfat?

(2) Motivation:  Now that I've been cleared by my physical therapist to work out more on my foot, I needed some concrete goal (like needing to fit into a bridesmaid dress) that made me want to invest in myself.  I might get to the end of my "homework" process and realize I don't need/want surgery.  But ultimately, I see my lower abdomen as a "scar" from the trauma of losing Nana/Mom. And I hate the idea of living a life always carrying that scar/trauma -- that I can do the hard emotional work, but still not lose the physical reminder.

(3) Honesty:  I might not talk about everything right as it's happening, but I know how important it is to normalize the thoughts and feelings of what it's like to be an obese person in this body, in this world.

I have my work cut out for me (there's some other stuff that he said that I will address in another entry):

— He wants me to go balls-to-the-wall and try
to get down to that 188 again... and then try for another 5lbs (he did comment that it's going to be much harder to do this the second time around, almost as if doubting my commitment -- pfffffft!).
—He says my skin makes me a good candidate and that he's encouraged by the way my skin has healed after other surgeries (Lord Squigglesworth is a shadow of his former self).
—He was also kinda surprised at how awesome my legs/butt are (see? proof that I'm an athlete!)





My intention for my next blog post is to write a few lists in relation to my experience between 2009 and 2010 ("the first time around"):

• What I was good at
• What I was bad at
• What worked 
• What didn't work
• What resources I had and used
• What resources I had but didn't use
• What resources I need this time around