FatGirl vs World

7th grade? Wearing my dad's polo and a sad bra.

Every woman's best friend and style guru, Tim Gunn, wrote a scathing article of the fashion industry's size-ism and my inner fat girl (from age 8 onward) is cheering loudly.  Mr. Gunn says:

Have you shopped retail for size 14-plus clothing? Based on my experience shopping with plus-size women, it’s a horribly insulting and demoralizing experience. Half the items make the body look larger, with features like ruching, box pleats and shoulder pads. Pastels and large-scale prints and crazy pattern-mixing abound, all guaranteed to make you look infantile or like a float in a parade. Adding to this travesty is a major department-store chain that makes you walk under a marquee that reads “WOMAN.” What does that even imply? That a “woman” is anyone larger than a 12, and everyone else is a girl? It’s mind-boggling.

It was mortifying when I was a pre-teen to have to exit the Juniors's section and venture into the Woman's section to find clothing that would fit me (anywhere from a 14-18, and a solid 36C), but would be unable to find anything because it was too mature for me.  Same thing went with shoes.  I was a size 9.5/10 in the 4th grade.  I would quite often end shopping trips with more tears than clothing and a frustrated mother.

8th grade, Goth Janet Reno

The summer before 8th grade, my mother took me a plus-sized store at the local mall.  There we bought leggings and tunics in every size and color (mustard and burgandy were big that year).  Though they made me look like a 60-year-old lady, they at least fit and covered my body.  Eighth grade hadn't even started before my mom got sick and within a month she had died.  Then came the task of finding a dress to wear to her funeral.  My father might have been more stressed out by shopping than he was at planning the funeral.  We finally found a black jumper-like size 20 dress at some store in the next town over with this green shirt to wear under it.

Coupled with the deranged haircut that I got (nb: never get a drastic hair cut while you are in mourning --Aunt Christina should have stopped me from doing that), I think anyone looking at me would assume that I hated my body, didn't want to be fashionable, and didn't care about the clothing I threw on my body.  On the contrary, I was desperate to fit in and have clothing that fit.

 I didn't shop much after my mom died.  I think partly it was just awkward to ask dad to go shopping with me (he always suggested the prep school look of plaid skirts and oxfords). I also wasn't the kind of kid to just ask for money and to be dropped off so I could do it myself. Nor was I the kind of kid to ask the women in my family for help (it comes loaded with their opinions as well). I do remember going shopping one time for my brother and asking to purchase a pair of boy's skater jeans -- you know the kind where you could fit a village in the legs.  I wore them all through 10th grade. But outside of that I just wore my mom's old clothing (her rainbow collection of turtlenecks) and hand-me-downs from dad (his plaid shirts).

With Steve S.  Ah, what a crush I had on him.

Shopping for myself was always an ordeal.  My Sweet 16 dress was a disaster of epic proportions -- a long white dress (it was only one that fit my body that was in my price range) with a crush velvet top and a chiffon bottom, at an event where we were serving Italian food buffet style. It just begged to get sauce on it.  I had tried desperately to find an age-appropriate knee-length party dress.  But when you're a 16/18 in 1997, that's a tall order. Also note the terrible hairdo (Thanks, Aunt Kathie, for taking me to your hairdresser who ignored my "don't give me bangs" mandate).

I had to have my Sweet 16 early (the problem of having an August birthday is that no one is around to come), and without any semblance of a tan, I look like a bloated ghost looking to haunt all my friends and family.

My brother's friend's younger brother, Dan. Pity date? Cause no one asked me.

Shopping was no better in 1999 and in order to circumvent the heartache of having to shop for a dress, my dad offered to have one made for me.  Why I thought a 15th-century Italian Renaissance dress was my best option, I'll never know.  But I will say that no one else had the same dress. Go me?

But somewhere in my delusion about style, I did find some peace in knowing that I wouldn't have to go to the store and find some hideous mother of the bride dress that was the only thing in my size, but still cut on the bias, with too many sequins in the wrong place, and no idea of how to make the wearer feel beautiful.

I'm actually wearing this dress today, the main difference is my pink hair.

It took a long time to know how to dress my body, and in what fabrics/cuts/styles, etc.  But it took even longer to give up feeling like the fat girl in a sack.  Sometimes that's really just looking at myself long enough until the self-criticism is replaced with a bit of self-adoration, and sometimes it's a bit of brass ovaries that don't give a fuck and knowing that I look and feel good.

But I will say this to Tim Gunn -- you're 100% right.  It's not just the clothing that's the issue for plus-sized women -- it's the whole shopping experience. I can go into a store and be ignored or directly insulted, but the worst of it all is when I go into a store and I'm not even represented.  And this is what I would want to say to designers and companies -- if your excuse is that your fashion wouldn't look good on my body, that's the fault of your design, not my body.  Cause I can make a Snuggie look sexy as hell.  If you can't step up to the plate, you lose my respect, my money, and my support.

Yes, that's a Snuggie.

(Oh and Tim -- if and when I ever get married, I'm totally going to ask you to help me find a dress.)

In my last post, I talked about the less obvious parts of weight loss as they relate to foundation work -- namely, getting your head/heart in the right place as a precursor to getting your body on board.  The next steps relate to the other parts of the pie (mmmmhmm pie) -- 1/5 exercise and 3/5 diet.  And it's really up to you (you know yourself best) to determine which to tackle next.  For purposes of my blog, I'm just going to talk about exercise next.

Exercise is a deeply personal thing.  Some people need to push their bodies hard and for other people, that doesn't quite work.  Some people (like me) are coming back from injuries and need to learn to trust their bodies.  Some people are working against a lifetime of equating exercise with punishment.  And some people are thrill-seeking endorphin-philes that want to push their mind and their body to some unnamed limit.  That's okay.  You don't need to judge yourself by what everyone else is doing.  Keep reading that last sentence until you hear the truth ringing in it:

I'm quite fond of saying that weight loss/health gain has 3 main components (I used to say 4, but I now include it the other categories) that are not weighted equally:


I wanted to talk a little bit about the foundation work.  That little slice of the pie can look very different for different people.

For me, the first part of the foundation was coming to grips with why I put on the weight to begin with (suffering the loss of my nana and my mother).  I needed to understand that trauma before I could effect any meaningful change in my life.  Otherwise, I'd be doomed to repeat the coping mechanism of eating over and over again.  I spent a good year in therapy to deal with my anxiety and did more work with my dietician to help understand the relationship between food and my sadness/need for connection.

The second part of my foundation had to do with coming to grips with my health and my body metrics.  I'm still going through this; starting over as someone with Celiac Disease and what that means for my diet and how I need to compensate.  But when I was first starting out, I think I needed to exhaust myself of all the excuses that absolved me of responsibility (such as a thyroid condition).  I needed to accept that my body was the result of my choices.  I needed to know my baselines -- my body chemistry, my body measurements (weight and tape measure) and my physical ability.

The third part was about changing my environment, my patterns, and my relationships.  It's not fun to take a look at your life and realize all the places that are pitfalls.  I had to own all the places in my life where I was able to make better choices but didn't -- because it was easy, it was what I always did, or what everyone was doing.  I had to be selfish and say "If I want my life to change, I need to change these things in my life."  And there was a lot of pain here as well as catharsis.  Doing this created space in my life to add things that would not only benefit me but benefit the people I cared about.

And the fourth part (that used to be its own category) is what I like to call "recovery."  I said that I integrated it into each category -- and it looks different in each category.  Foundation recovery is giving yourself the permission to take care of yourself and to let go of the rest.  Let go of the pain that disables you, let go of the grudge that eats away at you, let go of the people that bring you more sorrow than joy.  And then let go of the guilt of letting go.  Know that you can do these things and still survive.

I've been talking to my dad about his foundation, his path.  I said this to him privately, but I'll say this to you all (and to him) right here -- "I want your heart and mind to embrace this process.  Nothing to fear or avoid."  If you lay the foundation right, everything else becomes a product of self-discovery, of joy, of pride.  And none of it is because you're punishing yourself.  And that's what makes this time different than all the other times.

I don't want to go through the whole story of my surgery except to say that I had a L5-S1 fusion on July 15, 2016.  Today is my 4 week surgiversary.  The x-rays are from my 2-week follow-up (on 7/27/16) and my doctor said everything is looking good.  Last week I was able to get back in the pool.  I am still restricted other ways (bending, lifting, twisting, etc.).


For those who have come here because they're about to have the surgery or similar and want to know what they're getting into, I offer you a few tidbits.

1. Plan & pack accordingly.  There were a few things that I purchased for my home or brought with me to the hospital that were very helpful

Hospital: 
-- my file with all of my diagnostic tests and images (I don't go to any appointment without it)
-- my own ice packs because the ones at the hospital sucked (my room had its own freezer; get two so one can be chilling while the other is in use)
-- external batteries or an extension cord (most hospitals have outlets that aren't in convenient places for people with back injuries) for phone/ipod
-- flushable/disposable wipes (I couldn't shower for 3 days and these helped to feel a little more human)
-- 3/4 length bath robe with pockets (long enough to feel covered, short enough to not trip) and some easy-to-put-on, loose-fitting clothing.
-- sleep mask (you'll want to sleep as much as you can, whenever you're not eating or walking)
-- slip-on slippers with good treads
-- if you plan on using a cane (like my folding/adjustable one), bring it so you can practice with the physical/occupational therapists.
-- a fitness/step counter (trust me on this one -- not only did it motivate me to get me out of bed, but it also helped me measure how much was too much)
-- box of chocolates for the post-anesthesia care unit nurses in case you throw up on them (I didn't ... this time)

Home: 
-- Zero Gravity Recliner (unless you already have a fancy one, this is an affordable alternative -- and it's about the only thing I can sleep in)
-- Reacher/Grabber (you will use this all the time)
-- Toilet Seat Riser (the one I linked to is easy to put on/take off -- if your toilet is in the middle of Siberia, you may want one with handles)
-- Shower Seat (showering can be exhausting and sometimes it's just nice to sit down and take a break)

2. Your posse is everything.  Recovering from surgery is a lesson in humility and I learned that the first time I had to ask a friend help me take a shower, or feeling like an asshole for asking a friend to clean my cat's litterbox. Let people help you, let people love you. Surround yourself with all the people who show interest in either helping you physically (I used a Google Spreadsheet to coordinate visitors/helpers) or mentally/emotionally (I have a Google Hangout with people who are dedicated to keeping my head in the right place). You will need their strength on the days you don't have any.

Don't go it alone -- you will need someone with you at home for a few days/nights as you're still dealing with pain and instability.  This person needs to do a few main tasks:  (i) keep you hydrated (toss a little Miralax in whatever you're drinking) (ii) keep you medicated/on schedule (if you wait until you're in pain, it's too late) (iii) keep you fed (you'll need the strength) (iv) kick you out of bed (get up and walking every few hours).

3. Spine surgery rehab is non-linear.  You'll have good moments and bad moments, good days and bad. Some of it is predictable, some of it is not.  Try to focus on your progress and make adjustments as needed.  If you focus on tiny setbacks, you will drive yourself bonkers. And if you find yourself going bonkers, lean on your posse.

4. Have a good sense of humor.  Like I said above, this can be a really hard recovery both physically and mentally/emotionally. Everything you do will be affected by the surgery (and it already has been by the injury) and it will take time to recover.  Take the smiles when they come, seek them out if there aren't enough. And with that in mind, I present to you, the many faces of Lord Squigglesworth, II:

Aggressive exercise and calorie restriction?  WHAT THE FUCK, DUDE.

I may be no doctor, but this flies in the face of current (and long-standing) Center for Disease Control studies that say for people to lose weight & keep it off long term, they're better off doing it through slow and deliberate behavioral change:





Who among you has had any long-term success with "aggressive exercise and caloric restriction"?

Who among you has found "aggressive exercise and caloric restriction" just fosters yo-yo dieting, unhealthy physical and psychological habits, and in the long-term just doesn't work?

No one makes "Bionic Woman" gear -- this will just have to suffice.


So a little under two weeks before my surgery (L5-S1 fusion on 7/15/16).  I'm not supposed to take any meds (I don't usually -- mainly cause the ones that I have don't work, and the side effects suck) and no vitamins (I do every day) because some meds interfere with the fusion process.

Physically, I'm in a lot of pain right now, and just trying to get through the day.  This usually means a lot of lying down with my kitties and ice packs. But when I can, I try to get out and walk.  Working through the pain (instead of letting it dictate my mood and my movement) will also help hasten my recovery.  #BigGirlUnderroos

Emotionally, I'm still all over the place.  I'm kinda angry that we didn't do this sooner (a chance to be able to get a disc replacement?), scared for how everything is going to turn out, hopefully for possibly getting some parts of my life back (volunteering at WARL, sports, sleeping on my stomach).  I'm excited to maybe talk about some other aspects of fitness other than spine injuries.

I'm struggling with #BodyKindness.  I know my body needs all the love and compassion that I can throw at it.  But I sometimes get lost on tangents of me being angry at my body, my injury, my prognosis.

Being lost is okay -- so long as you know how to get back to the truth of who you are.

Some people have said to me "I don't understand why you're getting surgery" or variations thereof. (which I find so odd considering how many other people wonder why I've waited so long). They see me walking around okay (I walk a little funny because my left quadriceps is in pain and my left foot is numb) and think that I'm being rash in opting for surgery.  Or they see me playing softball and think that if I gave up softball that I wouldn't need the surgery.

Okay let's break this down...

1. When you live with chronic pain/illness, your relationship with pain changes.  In the past a 4 on the 1-10 pain scale might land you in bed.  Now, a 4 might be a good day.  Expectations shift.  You choose where to expend your energy and pain tolerance.  So while I may not look like I am in pain, chances are I'm in pain.  I am just better at dealing with it some days than others.  Most spine ortho docs use the Oswestry Disability Index as a measurement of how back pain affects a patient's life -- and you'll see it doesn't take into account many aspects of life.  I don't like being disabled by my pain and even if I'm walking, I'm still disabled.  (I'm still in the "severe disability" category.)  I will never have an ODI of a normal person (5-15), but an improvement of 10+ points is a good surgical result.  And you bet your butt that I will do everything possible to make that happen.  (See this study abstract that while the physical pain didn't reach the levels of the general population, the mental aspects returned to normal.)
2. I'm the only one that lives in my body and I don't need to defend my decisions to anyone (some people are well-intentioned, some are not, either way I'm really over it).  But I've been living with this issue for 20 years. I've seen the injury and my ability to work around it change over the years.  And right now, I'm just physically and emotionally exhausted.
    
3. My doctor and I agree that this is the right time to have the surgery.  We've been waiting for the intersection of technology and my physical health/readiness. We were hopeful that new technologies would come out in the past 10 years and get FDA approval.  Sadly they haven't.  In the meantime, the degeneration and deterioration of my back continues.  I don't want to wait too long and have irreversible nerve damage.
4. I've told people about my surgery because in some way it affects his or her life -- either a coworker who may have to fill in, or a friend that I may need to lean on.  I'm really not asking for opinions on my life choices.  I've really come to appreciate the people in my life who may not understand but still show up.
5. There are things I can do to minimize my pain (ice!) and things I can do to minimize damage (like not running), but there is nothing that I can do to reverse the damage.  We knew the trajectory of this injury -- the only question was when would I need surgery, not if.  My doctors emphasized early on to listen to my body and manage my own risk.  I gave up many things in order to do others.  Those moments when I get to use my body versus just lying in bed every day have helped keep me afloat.
6. I remember what it was like for my mom to be living in constant pain. She didn't have the benefit of early intervention. I asked my dad to write down his recollections of my mom's injury and he said that by the time she had MRIs (in 1989 -- she would have been 39), she had 3 herniated discs in her neck and 3 herniated discs in her lower back.
   
   What I remember was a little different.  I remember mom waking up in pain and instead of wanting coffee, wanted an inch of rum in a mug, a teaspoon of sugar, 4 oz of water tossed in the microwave for a minute.  I remember all the ways she leaned on me to do the things she couldn't do.  I also saw how my mom would focus on the things that made her happy (photography) and let some of the things that didn't make her happy (cleaning) go.
   
   I also remember thinking after my mom died that at least she didn't have to endure the back pain anymore. 

She is a bitch.

Rather...I am a bitch.

Chronic pain robs me of any grace that I may have left in my body or in my personality.

I have lost all patience for the game of "Have you tried...?"

Tylenol.
Ibuprofen.
Stretching.
Yoga.
Massage.
Inversion.
A brace.
A new chair.
A new desk.
Ice.
Heat.
Ointments and gels.
Anti-inflammatory diet.
That thing your mother once tried.
That quack doctor who aligned your whatevers.
The treatment you saw on the web.
The thing they were selling at 3am on tv.
Steroids.
Epidurals.
Physical therapy.
Rest.
More rest.
Time.
More time.

I am also tired of the platitudes and truisms and subjunctive tense. I know people are well-intentioned (especially friends/family). But I have grown increasingly defensive. Yes I have had some help and some witnesses, but for all intents and purposes, I have been alone with my spine injuries for the past 20 years. Most every doctor's appointment, every terrifying moment when I am falling, every moment curled up around a pillow crying because if I screamed from the pain surely the cops would be called. Every time a needle has been shoved into my spine it is my body alone that endures the pain and my heart/mind that endures the terror of "what if this doesn't work."

So hearing even a well-intentioned "things will get better" sends me into a rage. My version of better is making it to the bathroom in time so i don't pee on myself, or being able to walk the three blocks to work without having to use my cane.

Jack and Ginger just sit on me until i am done crying (Jack is on my shoulder now). They don't tell me that it is okay to have a bad day and that it is okay if i want to curl up in bed and fade away. They know i do not need their permission or blessing. All the same they seem happy for my company.

Friends say they will help. That all i need to do is ask. But having someone pick up cat food or help me dust knickknacks feels so trivial when i am lying alone at night shouldering 100% of this -- all of the fear and hopes that maybe surgery is the right thing to do at the right moment in time.

The cats have no answer for this. But Jack purrs in my ear and Ginny bites my toe. Tomorrow is another day.

Last Monday (June 6) it happened again.

As I bent over (part squat, part bend), I felt and heard the familiar pop, had the familiar panic of "Oh Shit, I'm About To Fall."  And my legs gave out from under me.  I didn't slip.  I didn't trip.  I lost feeling in my legs and gravity got me.

I've said time and time again that in regards to back pain "Until you know, you don't know." I can't even begin to describe the panic I felt as I crawled from my kitchen to my bed (where my cell phone was charging), picked up the phone to call my spine surgeon, Dr. Joseph O'Brien to get in and see him.  The GW MFA Spine Clinic informed me that he had left the practice.  I hung up the phone and spent the next 45 minutes crying.  I emailed my boss, texted my dad, and as a last-ditch hope, I started Googling frantically to try and find Dr. O'Brien.  And thankfully, I did find him, but he couldn't see me for a week.

In the meantime, I called back the GW MFA Spine Clinic to see if Dr. O'Brien's colleague, Dr. Warren Yu (who treated me back in 2007 for my back issues) was available.  Sadly he was in surgery all day.  So they offered their new chairman of orthopedics, Dr. Rao in the hopes we could get some images done and the ball rolling.  To quote the email I sent the GW Patient Experience team:

I found him to rather dismissive of my back pain.  He said to me "Don't worry. I've had back pain before and it gets better."  I asked him how long it lasted and he said "A year."  I've been dealing with my back issues for nearly 20 years.  Not once, not twice, but three times he asked me if i wanted more narcotic pain meds.  Each time I told him that I don't like pain meds (they don't actually help, and I'm still recovering from gastrointestinal issues/recent Celiac diagnosis). He didn't suggest any alternatives to the narcotics. 

After he performed a cursory examination and looked at prior MRIs/X-Rays/CT scans, I explained to Dr. Rao my back history and that Dr. O'Brien and I had a plan for my lower back (which was supported by the file that I keep with all of my medical records).  Dr. Rao was once again dismissive and said "I have to be convinced." I feel that he could have honored the plan at the same time as forming his own opinion.  For that he wanted a more current MRI.  

My insurance required pre-approval.  Once i received it days later, I went to the imaging center at 2121K Street.  The 1.5T machine was old, got very warm, and vibrated more than any other machine I had previously been in (including a 3T machine).  The MRI tech was quite lovely, though. I left with a copy of my MRI.  

A day later, Dr. Rao's nurse manager, Jami, called to say that Dr. Rao compared the 6/9/206 MRI with my 2014 MRI (ignoring the scans that I had in 2015 after a discogram), and said that he saw no changes warranting action and would I like to have a follow-up appointment with him to discuss? 

Over the many years that Dr. O'Brien had been treating me, he knew that I was not a fan of pain medication and that i often declined any offer of narcotics.  He also knew that I prefer to be proactive rather than reactive with my care.  Efforts to stabilize my spine over the years have helped, but the general trend has been towards more pain, less stability.  This was my fourth fall because nerve signals to my legs had been disrupted.  The second fall was in a shower and I knocked myself unconscious.  

I'm not expecting Dr. Rao to be Dr. O'Brien, but I do expect him to have respect for my already-established relationship with Dr. O'Brien.  I do not appreciate the fact that Dr. Rao's office staff was not forthcoming with information that Dr. O'Brien was still practicing in the DMV Metro area (only yesterday did I receive a letter announcing Dr. O'Brien's departure, but it didn't contain any information about how to find him/his new office).  I do not appreciate that Dr. Rao himself was not interested in hearing the surgical plan that Dr. O'Brien and I had (an ALIF at L5-S1)).  And I do not appreciate that Dr. Rao himself filtered my pain and my experience through his own experience of back pain; it wasn't empathy, it was dismissal.

In other words, there was no way I'd ever go back to Dr. Rao again.

Armed with a new MRI and my Metro card, I went to see Dr. O'Brien in his new office.  I can't even begin to describe how thankful I was to see my friend, my champion.  We caught up as to what's been happening.  We looked at my new MRI together and talked about the symptoms I've been feeling (namely, the ever present tingling/numbness on the top/sole of my left foot and down my left quadricep and to a lesser degree the tingling in my right foot).  He said it's classic presentation of nerve root compression at L5-S1.

At Dr. O's office after getting xrays.

We're back at surgery (I was scheduled to have an anterior lumbar interbody fusion (ALIF) on May 5, 2015.  As I approached that date, I was feeling pretty good, so I called to postpone and he was in accordance with that.  I love that Dr. O'Brien is supportive of my instincts).  Dr. O'Brien mentioned that I could possibly do a disc replacement at L5-S1, but when he investigated the facet surfaces of the L5 and S1 vertebrae, there was just too much arthritis/erosion.

Fusion is my only option.  Either we wait and my body will eventually do a natural fusion, or we're proactive and do the fusion, clean up the bulging/herniated disc, and make sure everything is in alignment (the L5 vertebrae shifted when I fell in 2014). The way I look at it is that I already wrapped my head around having the fusion last year.  I got an extra year out of my spine.  But I'm also really tired of being afraid that I'm going to fall, the numbness down my leg, and I'm tired of being sidelined by the injury.  I'm ready to address it head on.

The good thing is that it's not emergent.  I don't need to have the surgery today or tomorrow.  But Dr. O'Brien would like me to think about when in the next 3 months I want to have the surgery.