#GoTheDist 2016


Stephen King wrote in his book "On Writing: A Memoir of the Craft,"  "You can, you should, and if you're brave enough to start, you will." (emphasis added)  He called this a "permission slip." Couple this with Ranier Maria Rilke's "Letters to a Young Poet" (which I talk about here) and the whole picture emerges:  when faced with the questions of who we are and what we want to be, we need to harness our passion (Rilke's "I must"), couple it with the strength of our heart (courage), and not get in the way of our own potential.

Excuses become victories to overcome.
Obstacles become challenges to meet head-on.
Failures aren't disasters, but stepping stones.

That last one is important.  I know so many people who are afraid to evolve, to try new things, to go new places, to meet new people because they fear the failures that may await outside of their comfort zone.  That's an oppressive way to live -- and it's self-inflicted!  There's such great freedom in detaching yourself from expectations (of failure or even success).  It a beautiful blank canvas where anything can happen (Bob Ross: "We don't make mistakes: we have happy accidents"). 

#GoTheDist 2016's theme hopes to inspire and encourage the greatness that is within all of us.


Are you ready?




How to Join #GoTheDist 2016

Exhausted

A few months ago, I wrote about my fun trip to the hospital because of abdominal pain that I was feeling.
Timeline
9/1 & 9/2 - Hospital
Bloodwork, Ultrasound, CT, HIDA (nuclear test of gallbladder function). Left hospital with anti-nausea meds (Bentyl and Zofran). They recommended a follow-up with a gastroenterologist. 

9/11 - went to Dr. C.; didn't have best impression of him (he didnt even touch me/investigate during first exam). Gave me trials of Dexilant (GERD meds) but no prescription. Recommended that I take Prilosec (over the counter anti reflux meds). Scheduled me for endoscopy.

10/9 - Upper GI Endoscopy (EGD) (camera down my throat to view esophagus, stomach, and duodenum).  Revealed irritation (erythema) consistent with gastritis/reflux. Biopsies taken during EGD came back negative for ulcers, cancer (Barrett's Syndrome), Crohn's, celiac, and Heliobacter pylori.

I pretty much was throwing up every day or every other day in September and October. I am on a low acid/low-to-no fat diet (with a few other nos: caffeine, alcohol, gum, onions).

took a nap under a Geiger counter. 
11/5 - went to new doc (Dr. Z). He prescribes a stronger anti-reflux meds and a gastric emptying test. Stronger anti-reflux meds help for the most part. I only throw up about once a week now and it is largely based on me and my diet. Drinking too many liquids is usual the culprit.

11/18 - Gastric Emptying Study (see photos) (eat some radioactive eggs and see how long it takes to move through upper GI). Just got the results and they are normal. This rules out gastroparesis (slow motility of stomach)

12/14 - follow up with Dr. Z.  [Edit:  we talked about life since on omeprazole -- which has been better, but not perfect.  I'm still waking up with acid in my esophagus.  He's prescribing something for overnight.  We talked about my diet. He said that I should be able to eat some of the restricted food groups in small portions, but I told him that I've not had any luck with that.  I still have the pain on my right side.  He said at this point it might be musculoskeletal (i'm dubious about this...).  But that there are more tests we can do that could help figure out what's going on (and could also help determine if it's musculoskeletal) -- an endoscopic ultrasound and an MRI.  If those prove to be inconclusive, it may be the time to talk to a surgeon.]

Complications
During all of this, I had a ton of stuff going on at work as well as an office move.
Thanksgiving made me terribly sad cause it is my favorite holiday and I couldn't eat my favorite foods so I didn't go. Glad I didn't go. Spent most of the day in bed crying between trips to throw up.

Thoughts
I have been really frustrated because it is 3.5 months later and we are no closer to a diagnosis. Chronic pain (back) + chronic illness (gut) has been a really tough one-two combination. Feeling beat up is an understatement.

As drinking liquids tends to trigger my nausea (no matter how slowly I drink), I have been operating pretty dehydrated and this hasn't been good for my back. I tried holiday shopping yesterday and after 30 minutes and one bus ride I was already limping (and was without my cane).

I spend a lot of time in bed because I have no energy or desire to engage in life any more than I have to. At least Jack is a cuddle monster.

I had myself a good cathartic cry yesterday. I know many people in the world have a harder life than I do -- no doctors, no medicine, no sick leave from work, no insurance, no cuddly cat, no warm bed, no roof.... but as people keep asking me what I want for the holidays, it is abundantly clear that I don't want or need trinkets. I just want my health.

Underwater

So two things led up to this post -- a post that will mix metaphors and have your heads spinning:

1.  I saw #RunChat a week or so ago and popped my head in.  I love how supportive David (@RunningBecause) is, but the fact is that I'm already motivated -- that has rarely waned (except when it comes to diet because pizza is delicious).  I've been champing at the bit. Perhaps my running life movie (see below) shouldn't be titled "Out of Gas" but rather "Broken Down Jalopy."


I was okay when it was just my back.  But now it's gallbladder(?) + back.  I feel very overwhelmed by this.  I just want (1) a healthy day (without feeling like I need to vomit all the time) and (2) a day without pain (either my gallbladder or my back--which is feeling the effects of the dehydration) (and (3) a day without my ear ringing... but that's not wearing me down so long as I have a kitteh bent on purring in my ear at night).

2.  I've been reading Martinus' blog (@300lbsandrunnin) lately and really identifying with what he's been going through. Life is hard sometimes. It's messy. It's ugly. And always having to start over is excruciating because it's not like starting with a clean slate at the start line, or as  I said to Martinus, "I see it like wanting to climb a mountain but first having to dig your way out of a cavern with your bare hands." You exhaust yourself even before even getting to the point where you feel like you can once again take up fight.
I feel like I'm underwater and unable to get my head above the surface. Is it depression? Maybe? I guess? I feel very much like I'm never going to get to a place where my body and mind are in the same place. It's frustrating. I'm angry. I'm in mourning. And I'm also terrified. I don't know the way forward.  

I was thinking about the tweets above when I remembered my swim lessons as a kid. They taught me the survival float -- face down floating for when you're in open/rough water (floating on your back only works in calm water). This strategy conserves energy for when you need to use it.

Perhaps I need to remember that I'm using my energy to handle the waves and that pretty soon I'll be in calmer water.
 

Fat Slob

The tweet linked to this ESPN article

Let's break this tweet down a little:  a former NFL Tight end (Giants, Patriots, Cardinals) that retired after 3 seasons due to injury (i.e., a GROWN ASS MAN) is calling a HIGH SCHOOL TEENAGER (17) (John Krahn -- who is fairly new to football and knows he could compete better at a lighter weight and is addressing that already) a FAT SLOB.

Of course I took Jake Ballard to task over this. I mean that other chick at least recognized how her video wasn't intended for minors and how her words could be detrimental to vulnerable kids.  Here's a selection of the interactions with JB (versus his followers who don't realize how fat shaming doesn't actually work): 


Funny thing is that the whole time this was happening, I was sitting in a bar next to two NY Giants fans:  an elementary school gym teacher (from NY) and a 6th grade teacher (from MD).  They told me about this thing that is all the rage with school teachers apparently -- PBIS (Positive Behavioral Interventions & Supports) -- that helps change the environment that kids are in by giving them the tools and encouragement to respect themselves and others while applying themselves to their responsibilities and goals.  You know -- the antithesis of bullying. 
We KNOW (i.e., more than just theories and opinions) that fat shaming kids doesn't work.  We KNOW that celebrities/athletes (even former ones) (1) have large audiences (2) have a lot of influence (that is to say, they can use their words and actions to actually affect positive change).  And we KNOW that an adult fat shaming a minor isn't some act of benevolence -- it's ignorant and harmful. 

It really bothered me when he used the hashtag "#everyoneisavictim" -- dude did not back down at all from his stance that calling a teenager a "fat slob" is okay to do.  It showed (1) no compassion and (2) arrogance that his unsolicited evaluation of a teenager was somehow not hurtful to the kid or even other people reading his tweets. Kids who are bullied are victims.

BUT in the end, I actually did try to follow his suggestion.  I think I found John on Twitter and said "hi :) I would love to chat with you some time about health, fitness, and being a positive role model." (He followed my account shortly thereafter.)

So this post is a 2-part call to action: 
1.  Tell Jake Ballard how fat shaming doesn't work (tell him your story, send him studies, send him links of football players actually helping kids be fit (NFL Play60), etc.)

2.  Do what you can to help end fat shaming in your communities and/or help share what you've learned about nutrition/exercise with someone receptive to making a positive change in their life.

Baseline

On September 27, 1994, my mother passed away from a cerebral aneurysm that put pressure on her brain, hemorrhaged, and put her in a coma from which she never recovered.

Some doctors and scientists think that there might be a genetic/hereditary component to aneurysms. As such, my primary care doctor has wanted me to get an MRA for quite a while. The test is like the reverse of an MRI.  An MRI's image filters out the moving parts of your body to create a picture of what is not moving.  An MRA filters out the still parts to create a picture of what is moving (i.e., my blood).

The result is this:
looking straight at my face
 I think my brain is rather photogenic.

Looking at the right side of my face
I am expecting an unremarkable radiology report to come back from this.  But I thought the stills were too cool not to share.

Not Dead Yet

So...  I've not been writing that much on my blog mainly because I feel like I'm repeating myself regarding the back stuff and then I worry about my blog turning into one big buzzkill.  Well I'm going to try and rectify that for everyone that hasn't seen on social media.

On September 1st, I called Teladoc because I had some pain in my upper right abdominal area and wasn't sure whether that was a "Go to your PCP" type of issue or "Go to ER, you're about to explode" issue.  Teladoc went with the former so I called my PCP and asked if I could come in sometime that week.  I get a call back to come in immediately.

She poked around a bit.  She knows that I live on the higher end of the pain scale, so for me to say that something is painful means that it's (1) new pain and (2) above my regular threshold.  She wants me to get tests, but says that I can get them faster if I go to the hospital.  So that's what I did.

I got in a cab and took myself to the hospital where I had blood drawn by a really hot nurse (and almost threw up on him/fainted).  In addition to the blood tests, they sent me for an ultrasound, and a CT scan.  Everything came back pretty unremarkable except for a few elevated blood levels that could be explained by having thrown up the night before.  So they decided to admit me to run a test the next morning.

The most frustrating part of being in the hospital was the lack of communication between the ER doctors, the surgeon, the nurses.  They would ask me what the other ones said.  Um. Don't you have my chart?  

Second most frustrating part was the speculation.  They were throwing out possibilities of pancreatitis and pancreatic cancer.  For a good 20 minutes I was having a serious talk with myself about my own mortality and what I had yet to do in my life.

At that point, I called my brother and asked him to bring me a change of clothes and my glasses (so I could take my contacts out), my external phone battery, and of course my otter. He sat with me in the ER for a bit and we had a really good talk about life and stuff.

The test the next morning was pretty effing cool.  It's called a HIDA.  They inject me with a radioactive isotope (technetium 99) while lying underneath a Geiger counter.  They record how well my liver passes the 99Tc to my gallbladder. So yeah... for 6 hours I was radioactive. Sadly, no spidey powers. (notice the metal syringe in the photo below -- that's so the technician limits his exposure)


Fortunately/unfortunately, my liver and gallbladder did their job.  We were no closer to an answer. Odd thing was that I was in quite a bit of pain before the scan (they couldn't give me anything stronger than Tylenol the night before the test and I hadn't eaten in 24 hours at that point) and after the test I was in less pain.  They offered to keep me at the hospital and give me more fluids, but at that point, we still didn't have a diagnosis. I was discharged with instructions to follow up with a gastroenterologist.

I went to the gastroenterologist on 9/11 and he reviewed my blood work and test results. He wants to do an endoscopy (on October 9th) of my upper GI tract to get a better idea of why I'm still in pain (and can't really handle meat, fats, alcohol, carbonation). He thinks I may have some biliary sludge that just didn't show up on the tests.

My gut instinct (see what I did there?) is that my gallbladder will be removed.
I just want to get this over and done with because I'm just tired, irritable, and hungry.

But not dead yet.

Dogfight: Isn't it funny?

Two Fridays ago, my neighbor called and said he had spare tickets to the Keegan Theatre's performance of Dogfight -- the musical version of the movie by the same name.  The basic plot is that on their last night in the U.S. (San Francisco) before going to Vietnam, 4 Marines decide to have a dogfight:  the guys all put money in a pot to have a party and the guy who brings the ugliest date (unbeknownst to the girl) wins the pot.  


8th Grade
6th Grade
I was never a thin girl with cool clothing or a perky personality that put me in the middle of every clique.  I was trying to rock that whole fat and awkward look as best as I could.  Back then, I was also quite gullible/naive, wanting to always see the goodness in people. 

So when I was in 6th grade at my first dance, and an 8th grader asked me to dance, it never dawned on me that I was a walking punchline.  I had kind of known him from my brother's baseball team, and I guess I must have thought that he recognized me too and wanted to be nice to me.  He pulled me in the middle of the dance floor and as I started dancing, I could see from the corner of my eye his friends huddled together, laughing. 

I spent most of the first act with tears in my eyes -- especially the song where Rose (the female lead) reacts to what happened at the party:  "Isn't it funny? Isn't it funny? Isn't it funny you believed that it was real? Pretty funny.  All disasters have an upside. You can find one if you tried. You went dancing, you were dancing, you were dancing with a guy."



Dogfight kinda brought up all these feelings -- of inadequacy, of being an outsider, and learning to be distrustful of men and their intentions.  After my mom died (8th grade), many of the "popular" boys started being nicer to me (I'm not sure why but I think one of the boys' moms had something to do with it).  I was thankful, but still not trusting.  I was shocked, but not trusting, when in 9th grade gym, one of the most popular kids in the whole school (the older brother on the boy I had a crush on for most of my life) wanted to be my gym mixed-doubles tennis partner.  I was shocked, but thankful, when my crush came to my Sweet 16.  

Time for juxtaposition! 

So I realized that this whole jaded, distrusting thing that started in middle school lingers still.  
For example -- 

I posted this (and many other online dating first message disasters — #wtfokcupid) to my personal FB and a dear friend said "At least he finds you attractive. That's a type of compliment." And not only did I disagree, but I felt my stomach tangle into a knot.  In my world wanting to fuck me doesn't qualify as a compliment. 

I'm sure that many of my female overweight friends know what it's like to have a guy just come out and say that they're "throwing [you] a bone" or that it's only pity sex, (i.e., they think fat girls are easy targets that will take whatever they can get).  The sad thing is that some girl will say yes to this guy, or guys like him, not because she's interested in casual sex (no slut shaming here!), but because she thinks that it's a compliment and/or that it's all she deserves. 

I may still be a fat, awkward girl but through all of the taunting and teasing, the jabs and arrows, I have still managed to learn to believe that I deserve to dance (because the world is full of music) and that I deserve to be loved (because I am worthy and lovable for more than just a night).  But despite that I'm still wary of guys and their intentions.

One of the few guys in HS that I actually came to trust and adore said that one day I'd make everyone wish they were nicer to me.  I always thought it was because I would change.  I think I'm realizing now that he didn't mean that I would change -- it's that all the mean people would realize that underneath the fat, I was an actual person.

[ugh.... this was a hard one to write... took 2 weeks to really wrap my head around it.]

[Edit -- a friend from HS helped me to remember that not all guys in HS were assholes -- so shout out to ND who saw me walking home from school one day in the middle of winter and offered me a ride home.  Thanks to JH for picking up the phone the day I needed him.  And thanks for JE/PE for making the first xmas without my mom that much more bearable.]

The Problem(s) with "Dear Fat People"

**POSSIBLE TRIGGERS:  Please proceed with caution!!**

So... the whole Nicole Arbour "Dear Fat People" video thing... 


**deep breath**


1.  Obese people are fat, not blind.  We know we're fat.  We don't need some chick with a big mouth and a rabid following not talking to us but rather yelling at us as if we're complete idiots.  It's not like we need some Youtube channel to provide the same epiphany our very own eyes can provide.  


1a.  She makes a joke about fat people not being able to chase her down... LOL.  She doesn't know about us athletic fat people -- you know, the ones that finish marathons, IronMans, Tough Mudders, etc.  And she also doesn't know about sneaky, light-on-our-feet fat people that don't need to be fast because we're so nimbly bimbly after all those Zumba, yoga, and barre classes. She forgets about the strong ones who could dead lift her heartless, humorless body. 


1b.  There are many of us who aren't strong enough to weather the gale-force bullshit spewing from her mouth ("You have to be really f*cking slow to be offended by satire," she says in the [follow-up] video. "If you can't handle the truth it means you're a psychopath.").  And for as much as she thinks her "truth bombs" can help people, there's collateral damage for which she doesn't seem willing to take responsibility.  She offered some lame ass apology, "I never intended for kids to be watching it and I'm sorry if any kids who didn't understand that I'm a comedian were shocked or upset."  As if kids are the only ones who can be hurt by her words.


2. Yay! Another skinny person telling us how our fatness offends them using the transparent guise of "helping us."  **eyeroll**  If you want to help people, you ASK what they need.  And not all fat people are created alike, and not all fat people need the same help.  Some people need easy things like motivation, accountability, recipes.  Some people need experts (see below).


2b.  No where in her video or links does she offer actual help.  No online resources or support groups.  No recommendations to go see your doctor and get a physical, work with a dietitian, work with a NASM-certified trainer.  Nothing.  


3.  Her OPINION (i.e., not really a "truth bomb") really misses the mark.  In my opinion (based on talking to a lot of people, reading a lot of books, studies, and other materials) excessive body fat is a symptom more than it is a disease. I have said time and time again that I think that obesity is more often than not the byproduct of trauma (physical, mental, psychological, sexual).  And the more I started thinking about it, the more I came to believe that most food/exercise/body disorders (as they're interrelated and on a spectrum) are as well. (And if it's not trauma, there's still other outside forces that can influence a person's size, shape, and health -- but I'll leave it to other people to argue socioeconomic and other points.) 


3a.  Making fun of the survivors of trauma makes her an asshole, not a comedian.  


3b. Making fun of the survivors of trauma for not being able to wrap their heads/bodies around the trauma in their lives doesn't help people to address the trauma.  It re-traumatizes them.   For example, look at how many people gain or lose weight as a barrier between them and the people who sexually abused them.  You wouldn't yell at a bulimic to eat a cheeseburger when the real issue was someone violating their body.  Equally, you shouldn't tell a fat person to put down the cheeseburger when the real issue was someone violating their body. 


3c.  People who have endured trauma should probably start with professional help. 

(a) Cause you never know what trauma is lurking underneath all the layers of fat, and sometimes what's lurking needs a safe place to make its debut.
(b) It's really easy to transfer one harmful behavior to another.  For instance -- people who go from being food addicts to exercise addicts is not a myth.  It's an actual thing.
(c) People have been known to do some pretty harmful things in order to chase down their unrealistic goals. 

I'm sure there's more... but I'm kinda annoyed with myself for even giving it this much time/thought when really I should have just said "Bitch please."

Old photo is a perfect salute to Nicole.

here are some other responses: 

SEO Click Bait

For all the people who find my blog because they have Googled "fat girl bikini" (and its various permutations) here you are.  I even put a filter and a frame on it for you. Artistic, right?


Rocking It.
(Buy the bikini here)

Update -- 
And yes ladies, he's single. 

Sympathy Pain

Sometimes I say things flippantly and it takes a moment for it to set in and I realize how profound I can be when I'm not trying.  I just tweeted about how I'm in pain right now:


I realized two things in this moment.  

First, though I know my body is physically connected to each other as a dynamic machine, but I never paused to consider that my body parts may be emotionally connected to each other.  That some deep part of my reptilian brain (the one that says stop, relax, heal) is trying to override my hominid brain (keep moving and rehabbing).  

Second, I quite often say "Until you understand, you don't understand back pain. And I wouldn't want you to understand."  Part of me realizes how shitty this is -- that I'm limiting other peoples' ability to relate to me and to my injury.  The other part feels that it's completely legit.  Spine pain is kinda unlike any other physical injury--it doesn't localize itself.  

When my neck was really bad, my left arm got the worst of it.  I'm still dealing with the continual tinnitus.  I was constantly dropping things (I sometimes still do on days when I'm tired and not paying attention to my posture). With my lower back, I can feel the heat of inflammation over L3-4, L4-L5, L5-S1.  But I also feel it in my hip.  I feel it down my legs.  I'm quite often unsteady in certain positions (like when in the shower washing anything below my hips, or flipping my hair over so I can put it in a towel), sitting becomes painful at work (it's impossible to make my desk a standing desk without losing all my working space b/c it's a circular cockpit). when at the kitchen sink washing dishes, etc. 

I realized that I identify more with people who have full body injuries, diseases, and chronic pain, than people who, for example, just sprained an ankle or dislocated a shoulder. When I talk to people with chronic pain, chronic diseases and injuries, there's this pause of recognition where we just understand there's the pain of the injury/disease and the pain the injury/disease causes. 

In the discussion that Janet and I led at Fitbloggin (Living with Pain:  A Survival Guide), we had two posters:  one of a really badly drawn (mea culpa) body for corporeal/visible pain and the other one a list of "invisible pain" (I would share photos, but we had people put their names on them--so it's not for me to share really).   When we were talking about visible and invisible injuries, there was almost this collective sigh of relief when we could say to each other that we were depressed, anxious, scared, embarrassed, disappointed, and just plain exhausted.  

What a beautiful release to not have to be strong and perfect. 
What a beautiful expression of grace to be able to hold each other in our hearts for just an hour. 

(now that I'm in full on tangent mode....) I think that's what sympathy pain is really about -- the ability to allow someone to be in pain and be in their presence and not try to fix them, to cultivate empathy in your body and your mind and be able to shoulder their pain for a short time. 

Maybe my body is trying to spread my pain in a thin layer, rather than a big glob of pain right over my back. Maybe my legs are saying "we're strong enough to take some of this."  Or maybe it's my back saying "I can't handle all of this." 

LOPMIAAMO -- the new FOMO

Screw FOMO (fear of missing out); I have LOPMIAAMO (lack of planning means I am already missing out).

In the first few Fitbloggins, I think we were all still getting to know each other and we really saw the hotel as our space to connect. In more recent times, I feel like the hotel is the cruise ship and everyone is going on shore excursions (tea, Rockies baseball game, Red Rocks, etc.).

My LOPMIAAMO usually stems from the pre-Fitbloggin dread of not feeling like I have done enough to earn my spot here cause I haven't exercised enough or lost enough weight.  Or hell, I haven't even blogged a lot/at all lately.  I know it still shocks you all to find out that I am an introvert. (No lies, I really am.)

Then there is the always-present nagging voice in the back of my head that no one wants to play with me.  Last-picked for kickball kind of stuff.  When that LOPMIAAMO sets in, I usually just wander off by myself. I have done a lot of walking in Denver cause of that.


This year my LOPMIAAMO is a bit of the above with also having had a busy month leading up to Fitbloggin15. I just didnt read any of the "ZOMG LET'S DO THIS!" posts.  I signed up for Fitbloggin and the hotel months ago and then tucked that away in my brain only to unwrap it to book my flight and get packed.

Last year the LOPMIAAMO really got me down. And this year, I didnt plan any better.  LOPMIAAMO is worse than FOMO because it means i could have done something about it and just didn't for whatever reason.

The solution is finding a way to reengage. I will get there.

[Edit:  I realize now that had I planned better, I would have taken a day trip to the Anschutz Wellness Center....]

The Pre-Fitbloggin Post


So... I don't want to surprise/shock any of you all if you see me using this at Fitbloggin.

I don't always need it, but certain things like traveling and sitting down for long periods of time exacerbate my lower back pain.  Lately, I have either had this or my big umbrella with me when travelling just in case.

I freaked out a little while ago about how people would handle seeing FGvW with a cane.  Kelly/@CurvyFitGirl reminded me that I can't control how people react.  But please don't be too worried if you see me using this prop.  I assure you that I am fighting every day to get through this.


Who knows... I may use it to up my Zumba game.
My other yearly pre-Fitbloggin post and disclaimers:

(1) my brain is a sieve when it comes to names. Please forgive me when i forget your name the first, second, and twelfth time.

(2) I am actually an introvert.  Sometimes I need some quiet or a good cry. Fitbloggin is an emotional place. But when I am out an about I am good for hugs.

(3) I back dat ass up. Beware. (Ask @DubyaWife.


Okay, almost go time. See you in Denver.

When it rains...

I was really shocked to find out that the idiom "When it rains, it pours.®" was coined by ad execs to sell Morton's Salt.

You know how salt is hard to pour if it has absorbed any humidity? Morton's solution was to add magnesium carbonate to their salt.  It absorbed the humidity before the sodium chloride. This meant, even when it rained, the salt would still be free flowing.

This is totally different than the connotation now attributed to the phrase regarding luck -- that when either something good or bad happens it tends to trigger a deluge of the same luck.

Anyways...

Y'all know I've had some pretty spectacular misses when it comes to dating.  You all know that an boy damn near made me a quadriplegic.

Well... it's pouring.

Not in the whole magnesium carbonate way (well I guess in an additive sense...), but in the whole deluge of luck way.
I don't want to count my chickens before they hatch, but just know that I'm really happy right now. Content, cared for, adored.  I'm excited for all the possibilities.

It's raining and I'm out there dancing.



Not whether you win or lose; it's how you play the game.

I've mentioned in the past that I play this nerdy game called Ingress (join the Resistance, we have cookies!).  It's an always-in-flux worldwide game of capture the flag using your phone and GPS location. There are flags (portals) everywhere around you and you use your phone to claim (deploy) or capture (use xmps) them, get resources from them (hack), or connect them to other locations (link & field). 

It came into my life when I wasn't feeling so great about my work effort in the gym (back in December 2013).  I couldn't run as much and there were days when I could barely walk.  Ingress gave me the motivation to get out of the house and at least try to walk around the block at the very least.  Some days I was able to move more, some days less.  

You can play the game as a solo player, but the game's strength is when you start playing with other players (agents).  My teammates have been a great support at times (and sometimes a pain in my ass).  One of my favorite friends from the game even came to the hospital to visit me when my back went haywire a year ago (wow, it's been a year since being in the hospital). 

We also have these large-scale events called anomalies where hundreds of agents converge on a single location to play the game for a 4-hour block of time (with meetups before and parties afterward).  This past weekend, I had hundreds of teammates (and opponents) converging on Washington, DC for an anomaly.

I was very busy preparing for this event last week -- so much so that I walked 72 km (44 miles) from Sunday 5/24 to Saturday 5/30 while playing the game (almost 2000 km since 12/18/13).  Crazy, right?  Sadly, the Resistance lost the DC Anomaly - but I had a lot of fun playing on the NYC team (**waves to Team Cherry Bombs/Terribly Delicious Decisions**).


Now that the anomaly (and the swag orders) are over, I can start to focus on my next big event: Fitbloggin 2015.  

Much like DubyaWife, I always spend the few weeks before Fitbloggin with a certain amount of dread and self-critique:  "You don't belong here..."  And my friends spend the few weeks before Fitbloggin reminding me that if you feel like you don't belong at Fitbloggin, that's when you need to be there the most.

This year I'll be leading a discussion with Janet Oberholtzer on a topic that is near and dear to my heart:  Living With Pain:  A Survival Guide.  Both Janet and I have had some pretty fun injuries.  I think there's a big difference between suffering an injury and learning to live with one.  Living with an injury isn't about accepting limitations or accepting defeat -- it's about moving into a new phase of your life with a bit of grace, humor, forgiveness, and a plan of attack.

I can't wait to see you all there.

Well Hello There!

My friend recommed that I try one of those "we will send you everything you need for you to make a meal" services -- Hello Fresh. I have wanted to for a while and she made picking (which among many services) easy.

I have a free box this week to try the service. I have 3 meals (Argentine Spiced Steak, Pan Seared Chicken with tomato-barley hash and charred broccoli, and  Creamy Pear and Asparagus risotto with goat cheese, walnuts, and mint), but I got to choose from five. And yes, they have a vegetarian meal plan option.

I really liked how they showed calorie counts and ingredients before you ordered.


Got my first box today and couldn't wait to dig in. Not too complicated--it comes with photo recipe cards that lay out each step very well along with the timing. The portion sizes (I opted for 2 servings-- dinner and lunch the next day) are great and it gives you the breakdown of each pre-portioned ingredient (in case you want to omit it) (I love fresh asparagus; it does not love me).

I think this is great for people who are intimidated by cookbooks, grocery stores, and/or their kitchen (ahem...Dad), but want to learn how spices and flavors play with each other in a controlled environment.


I am on my balcony now, enjoying the evening breeze with my meal of Argentine Spiced Steak and couscous with a chimmichurri sauce and a glass of wine. All-in-all a pleasant and delicious experience!

If only Hello Fresh came with someone to wash the dishes.

PS: This was not a sponsored post. If you want to try your hand at some home-cooked meals with @HelloFresh, you can save $40 on your first order with my code FNJNPK at www.hellofresh.com

[[EDIT:  So... I made the 2nd meal, a chicken dish and promptly suffered a week's worth of food poisoning.  Hello Fresh (1) refunded my money and (2) changed their mailing practices.  I'm a little gunshy about giving up control of picking out my own food now.]]

Come & Gone

I don't really believe in luck or fate.
But it doesn't mean I won't tip my hat to it in times where, if it existed, it wouldn't hurt to have it on my side.

I had my neck surgery on 12/12/12 at 12pm.
I scheduled my back surgery for May 4th (As in "May the Fourth be with you").

About three weeks ago I made the call to cancel it.  I left a voicemail.
The next day the surgeon's scheduler called to ask me if I could re-schedule it because the doctor had a conflict.

Basically, the fates didn't want me to have the surgery.

Today is May 5th and is a good day.
I'll take it.


I get knocked down, but I get up again


All morning Saturday and part of the afternoon, I had been running around to prepare for that night's Ingress party to celebrate an awesome in-game operation that required world-wide cooperation.  I kinda went a little overboard on cupcakes (2 kinds -- Funfetti with blue icing and pineapple upside-down cupcakes -- around 70 cupcakes total). As I was baking, I simultaneously did 4 loads of laundry.

By the time I got to the bar, I was thirsty for a beer and a chair.  I drank my first beer while flitting around the room and introducing myself to the people who had come in from out of town to hang out and celebrate (DelaWHAT? Delaw[h]ere? Okay, I guess you had to be there.)  I had just purchased my second beer and saw a free seat at a table. Ah, sweet feet relief.

With my right hand on the table, and my left hand holding the beer, I approached the bar stool and shifted my weight over my left leg so I could get my right butt cheek on the chair and slide on in.

WRONG

My left leg went numb and weak.  It gave out under me.
In my milliseconds of panic, I realized that I was still holding my beer and that if I didn't do something, it would get everywhere and on everyone.  I tilted it toward myself and made the sound of  what can only be called a dying egret. I landed on my ass with a thud and beer soaking my shirt and jeans.

My back injury always catches me at the most in opportune times (ahem, in the shower).  But this was the first time that I actually lost feeling in my leg and fell in around friends.  (Once in college the same happened, but it was during taekwondo while throwing a roundhouse kick)

I'm so very lucky that my friend E was nearby.  He and I have discussed my injury (and his injuries) quite a great deal. He knew to wave people off from trying to lift me up immediately (until I knew that everything was working and until I caught my breath).  He stood guard as I gathered myself and took stock of what happened, and when I finally got myself vertical.

The next day, E posted this on his G+ page:


It was a good reminder to me that although I may have had people in that room happy/amused to see me fall, that I always get up.  I've been dealing with this injury for 17 years (at varying degrees) and never once have I just laid on the ground and pitied myself.  I've never asked for special considerations (other than just patience) and I've never asked for people to do for me what I could do for myself (though, I'm always grateful for assistance when I can't do for myself).  

It reminded me of New Rule #8:  Even on your worst day, you can be someone's hero. 

And maybe there needs to be a corollary to New Rule #8:  Even on your worst day, a heroic friend will be there to either help you up or be there when you get yourself standing under your own power. 

A mile in her shoes, part 2

One of my most-read entries is "A Mile in Her Shoes" -- a post describing what it's like to have degenerative disc disease, bulging discs, herniated discs, etc.  It was my answer to Spoon Theory -- a story about what it's like having Lupus, and has been applied to other "invisible" diseases.

I thought I'd update that with the story of a mile that I recently walked.

On Friday night, I was playing Ingress (Go Resistance!) with friends (doing something pretty epic in terms of game play), when some people wanted to take a break and get something to eat/drink. There's very little to eat drink around the National Mall at night, so we decided to walk to a place with a few options.


On the walk, I lagged towards the end of the group, chatting up a teammate that was also moving a bit slowly. We compared injuries (military; had been shot in the leg).  I offered him my cane, he refused, saying I had it worse.  Halfway through the walk the compression started to get to me. I'm glad he didn't take it.  

We get to the bar and it's my idea of hell: crowded, loud, full of 20-year olds and a few out-of-place old people, and multi-level.  I took the elevator to get downstairs where my friends set up shop.  When I finally got a beer and was able to sit down, some guy behind me kept bumping into the back of my chair.  I was relieved when it was time to head back.  My friends took pity on me and we took a cab back to the Monument (where my other friend had parked).  

It took two days to recover from that one mile walk.  Saturday was spent in bed reading.  Every time I tried to move or get out of bed my eyes would well up with tears.  Sunday was a little better.  I was able to do a little cleaning.  My friend Tim was awesome and met me at the grocery store and carried my groceries home.  We then went out for burgers and drinks.  As I knew I'd be ending the night with pain meds, I stuck with the shot of amaretto and untold amounts of seltzer.

But that's what that 1 mile has been like for me for the past year or so.  
A far cry from the person that ran nearly 1000 miles in 2013. 

Mixed Decision; Mixed Feelings

The other day I received a lengthy letter in the mail from my insurance provider with the ID "Mixed Decision."  It began:
We have determined the following is medically necessary and eligible for benefits:
22558 -- Arthodesis, anterior interbody technique, including minimal discectomy to prepare interspace (other than for decompression); lumbar
22585 -- Athrodesis,  anterior interbody technique, including minimal discectomy to prepare interspace (other than for decompression); each additional interspace 
22851 -- Application of intervertebral biomechanical device(s) (e.g., synthetic cage(s), methylmethacrylate) to vertebral defect or interspace. 
But then, in the middle of the page was this:
Services NOT Eligible for Benefits 
20931 -- Allograft, structural, for spine surgery only
The clinical reason for our determination is:  Your doctor has asked to do surgery on the spine in your lower back.  You have had back and leg pain.  We asked your doctor for information about your back problem and the surgery.  We have reviewed that information.  We have also reviewed your health plans medical policy for spine surgery.  That policy says the material your doctor has asked to use to help the bones heal together is not proven to be equal to or better than other products available for your condition.  Therefore, the use of this material is not covered.  The rest of your lower back surgery is covered.  
Translation:  The ALIF fusion was approved, BUT they probably want me to use an autograph (i.e., a piece of my hip bone) as the spacer for my L5-S1 fusion versus using lab-created or cadaver bone.

If you read my blog entry, "Refuge but no relief," you know that this isn't an easy decision.  The minute they slice me open, my back will never be as strong as it once was.  Our bodies are amazing machines and science has yet to replicate the intricate beauty and strength of that machine.

There's also a chance of failed back surgery (i.e., the surgery isn't successful in relieving pain/other symptoms) OR that the fusion at L5-S1 creates problems for other discs (especially L3-L4, L4-L5 that are already bulging), as is common with fusions.

My gut says "wait as long as you can and try to get the hybrid surgery."

Why is this?  The L5-S1 fusion is going to happen no matter what; it's just a question of when.

The fusion will most likely put added pressure on the L3-L4 and L4-L5 discs, accelerating their degeneration/bulging/herniation.  If the Globus Triumph (the technology my doctor wants to use) isn't FDA approved by the time that happens, I'll most likely be looking at more fusions (decrease in range of motion/mobility).  Even if the Globus Triumph is FDA approved by then, (1) I may not be a good candidate (because of the progression of the degeneration) and could be disqualified immediately; (2) my insurance may not approve the use of the device because it is too new to them, thus disqualifying me financially (this isn't something I can pay for out-of-pocket).

Like I said, it's a matter of when.  The pain is restricting my life in new, fun, and unimaginable ways. My ODI Score has increased (from a 46 to a 52) mainly because I am unable to sit for periods longer than 20-30 minutes without pain (when sitting or when trying to stand up), I have trouble walking (and am ordering a cane for myself), transit is unbearable (car/taxi, bus, subway) for many reasons, and I'm having trouble cleaning my apartment (need to hire a maid).  Again, ODI doesn't account for many parts of my life where I'm restricted.

Basically, I prioritize my errands/chores for good days, but on all other days you can find me in bed. I'm in too much pain and too exhausted to do much else, and even if I do other things, I end up paying for it.

In all ways, this is not the life that I want to be living.  I want better for myself and right now I'm not sure what that is.

Good Day, Bad Day, Calculated Risk Day


For the past month or two, my back has not been cooperating.  Because of this, I pretty much have stuck to home/work and errands with the occasional drink at a non-crowded bar with very protective friends

But yesterday was a GORGEOUS day after all this snow and I was feeling the cabin fever.  I texted a friend for brunch and after we took an Ingress constitutional,winding up at the Washington Monument. All told, more walking than I've done in a while. 

I took a bunch of pictures and posted them on Facebook.  Someone replied the the photos and said "I hope this means you were out and about in today's nice weather and feeling better!" 

Yes. The weather was PHENOMENAL.  As for feeling better.... I don't really know how to address that.  People often see me have a good day and think that I'm magically cured. Or worse, they see me on a good day and think I'm exaggerating the bad days, or that a bad day isn't lurking in the shadows.

Ask anyone with a chronic disease, injury, or pain, that there are good days (where you have the energy to do things and a body that's on board), bad days (where you have no energy and/or a body that is not with the program), and days that are in-between.  

There are days and events where one must make a calculated risk:  we may not have the energy, we may not be feeling well, or we'll know we'll pay for it after, but there's something that's worth the expenditure or after-effects. For example, I'm going to a 2Cellos show in April.  I know that sitting for that long will not be fun, but I'm real excited for the show. 

Lean on me when you're not strong

I am a proud person and don't like people seeing me weak or vulnerable. Sometimes I have no choice.

Last night the plan was to get dinner with my friends Neighbor John (so as not to confuse him and my brother John) and Amanda (who I have known since college and who has been so sweet and supportive with the whole back thing) at a local grocery store that also has a little dining area. After, I wanted to stop by the bar where my friend Kevin was DJing cause it has been a long minute since I have seen him.

Midway through my grilled cheese I knew I was in trouble. I had shifted in my chair and felt that familiar, searing pain. I whispered to Amanda that something was wrong. Eventually, it got to the point that anytime I moved you could see it on my face.  I try to keep the panic and pain hidden.

The employees of the store called last call and I knew I was in trouble but had a few minutes before they were gonna kick us out. I asked Neighbor John if he could walk me home.

We waited until most of the other patrons to leave before I tried standing up. Immediately my legs started shaking as red hot pain moved through my back. My friend (inculding one of Neighbor John's friends) huddled around me wanting to help. They offered to get me a cab but I knew the motion of the cab would be too painful. They asked if I needed to go to the hospital, but the ER would have just given me pain meds and sent me on my way, as they tried to do last time.

Tears began to roll down my face; part pain, part embarrassment. Neighbor John said that he didn't realize that my back pain was this bad. Another patron (who I think was a doctor) asked if i needed help.  Amanda asked the staff if they had an ice pack.  Bless her she remembered.

With the ice pack I was able to take a little edge off the pain, enough to get to my feet. Amanda, John's friend, and John all helped me shuffle out of there. What would have normally been about a 10-minute walk to get home took much longer. But thanks to my friends I got home.

I am still in excruciating pain (fuck you Percocet... you have one job...) and unable to move well. I can't sit, i can shuffle a few steps before I need something to support me. I am even wearing my corset to help limit movement and provide a little support. Also, corsets are great for securing ice packs.

Today is my brother's 35th birthday. Instead of being able to celebrate with him, instead of being able to enjoy the sunlight, I am in bed trying not to move. But that gives me time to be thankful for everyone in my life who sees my pain and knows that I am fighting to stay afloat.

Attitude of Gratitude

I've recently become fascinated with the UK television show Embarrassing Bodies.  I've been following Dr. Christian Jessen) on Twitter for some time (he's adorable, candid, and always has good info).  I don't plug my TV in/don't have cable, but I don't think anything like this exists in the United States.  People in the UK talk about their medical problems on national TV.  Not only do they talk about them, but they quite often get naked and have exams.
following one of the show's doctors (

But I like their take -- that despite the show's title, our bodies are nothing to be embarrassed about, that we owe it to ourselves to get to know our bodies, and to have honest and frank conversations with our medical providers.

Anyways, I was watching an episode last night and they had a feature on a woman who has had arthritis since she was a child.  She's had both hips replaced and both knees replaced.  She uses a wheelchair to get around most of the time, but she's not confined to it. She said something that stuck out to me -- "Arthritis has added something to my life."

For so many people with chronic illnesses,injuries or pain, the illness/injury/pain is about what it has subtracted from his or her life.  We think about the things we can't do or have missed out on, we think about how we feel like our bodies have betrayed us and sold us short.

But man... what a novel concept that chronic illnesses/injuries/pain can actually add to our lives.  I know that my spine injuries have helped me cultivate more compassion for others as well as for myself, and more gratitude for my good days (and even a few of my bad). It has also helped me chill out a bit.

Her statement also reminded me to stop being so adversarial with my back injury. My refuge and relief will come from honoring the gift my injury has given me -- the ability to listen to my body, honor my pain, and returning to trusting my body.

Refuge, but no Relief

If you've read my "About Me" section, you know that I have a degree in English with a minor in creative writing.  When I was younger, my emotions (ahem...anger, sadness, disappointment, rage) made it impossible to communicate sometimes.  Writing was my refuge, the place where I could put pen to paper (in written journals or letters) or fingers to keyboard (on my personal blog that I started in 1998), and create some objective distance from the surface emotions and really figure out what was going on.

There are still times where I turn to writing as my refuge.  The only difference now is that I'm doing it very publicly. I think that's one reason why people connect with my story, my message, and myself:  I've spent years honing my ability to sound unfiltered, raw, and self-aware.  But I do this for myself as much as I do it for any person that reads my blog.  Sometimes life can be so overwhelming that the only way I know how keep my head above water is to write. And so...

Recap:
From late-2007 to the end of 2013, my lower back behaved pretty well.  Between 2011-2012 I was more focused on fixing my neck.  As of February 2013, my lower back hasn't been faring as well.  Not only have I lost feeling in my leg twice while I was in the shower, but also my rebound time after exercising is much slower than it used to be, and I'm having more bad days than I used to (i.e., times when I can't exercise, times when I'm in pain and it's hard to do just about anything, depression because I'm in such pain).

So at the end of January, I made an appointment with my spine surgeon (who I adore, who is a smartypants).  He was hopeful that he could intervene and alleviate some pain.  He assigned some home work -- a few diagnostic tests (MRI, discogram) -- before he could make any decisions about what he could do exactly or whether he could do nothing at all.

Update:
I had spent most of the long weekend in bed -- partly because it was very cold outside (my back does not like cold), partly because I was still exhausted from the discogram, and partly because I was so on edge about my follow-up.  Oh, and probably a bit of depression too.
I tried my best to take a "come what may" attitude, but that didn't work. What I really wanted was for my doctor to walk in and say "WE CAN REBUILD YOU! I have seen all of the tests, I know your history, I have a plan that will leave you pain free and doing cartwheels down the corridors of the hospital."  (NB:  I don't know how to do cartwheels as is...)  I feared that he would say "We missed our window of opportunity.  You're too damaged."

My follow-up appointment with Dr. O'Brien was at 10:15.  The nurse let me know that I was the first of his patients to brave the elements and make the appointment. At 10:45, I started to wonder why I hadn't seen my doctor yet.  I wondered if he was filling in for the other spinal doctor there.  Maybe he had gone for a long coffee break.  Maybe he was standing in front of a mirror rehearsing what he was going to say to me.

At 10:51 he walked in and, after friendly greetings, said "Well, I've been looking through your test results and scans and I have bad news. Your discogram results indicate that you're not a good surgical candidate as there was high levels of pain at multiple levels. Any surgery could leave you worse off than you are now."

My heart sank with an audible "thud" when it hit the floor.

Just by looking at my face, eyes welling up with tears, he knew just how much I wanted him to have the same definitive and clear plan that he had for my neck. For all the joy that I had when he said I was a good surgical candidate for my neck, he knew there was an equal and opposite reaction for bad news.

Dr. O'Brien handed me the box of tissues as I squeaked out, "Did we miss our opportunity? Did we wait too long?"

He explained why I wasn't a good surgical candidate based on the discogram, and how insurance most likely wouldn't cover the surgery based on those results.

He and I had discussed the discogram results and how I felt that they didn't give accurate results. My understanding was that the test was trying to recreate the pain that I normally feel. My discogram didn't recreate the pain I feel on a normal basis:  the pain that I felt during the discogram was frighteningly new -- the lightning that I felt go down my right leg and the whole-back spasm were both new.

I was relieved when Dr. O'Brien said that it could be considered a "failed discogram" (i.e., not yielding useful information) and not so relieved when he offered to have another doctor redo the discogram (um, I'm sure the other doctor is nice, but hell no). I was also amused when he said that he used to call them "scream-o-grams" but then a bit perturbed as to why he didn't warn me. I felt like I was the odd woman out for screaming my way through it, but apparently this is a normal reaction to needles being stuck in your discs.

I asked Dr. O what he would do if he set aside the discogram and I had a few million bucks, keeping in mind the long game (i.e, what would he advise for the long-term health and flexibility of my spine?).  He said that the x-rays and MRIs both point to L5-S1 being the main culprit of my pain as that was the site with both disc and vertebral degeneration.  He advised against a disc replacement in L5-S1 (they aren't as stable as cervical replacements, they are very hard to revise--the anecdotes alone were reason enough to be cautious about any back surgery) in favor of an Anterior Lumbar Interbody Fusion ("ALIF") using an artificial spacer (i.e, not my own bone [hip], not cadaver bone [eww]). In other words, the very thing I was trying to avoid (based on failure rates/cases, restricted range of motion, and the anecdotal advice of just about everyone I knew) was now my best surgical option.  He said that the U.S. is a few years away from the multi-level devices that he would want to use in my lower back at L3-4, L4-5 (the sister device to my cervical implant, and the next generation of lumbar artificial discs [there hasn't been a major breakthrough since 2004 and 2006]).  An L5-S1 fusion could buy me some time and stabilization.

Dr. O'Brien said he'd give me some time to think about it (or rather, as he knows me kinda well by now, to research the crap out of it) and that we could circle back.  I asked him "what if we petition insurance now?" And he asked me whether I wanted to go against his advice and ask for L5-S1 artificial disc, or whether I was asking for the ALIF.  That kind of threw me cause, well, I don't have a medical degree or 20 years of orthopedic experience.  I have no business making that kind of decision.  Trusting Dr. O'Brien's opinion, and my limited knowledge of L5-S1 disc replacement issues, I begrudgingly asked him to pursue the ALIF.

The thing is this:  insurance could still say "nope, too risky, can't approve it" and then we're just back at the point where we started -- that to do any surgery would cause more damage than just staying the course with conservative (ahem ineffective) treatment.  Or they can approve the ALIF and I could chicken out, preferring to wait until the day when having surgery is a better outcome than doing nothing (i.e., for when my discs completely rupture versus slowly leaking).

I don't know what to do.
I hate not knowing what to do.
I hate not having a crystal ball.
I feel a lump in my throat every time I try to talk about it.
I remember how sad and frustrated I feel on bad days.
I feel the weight of the depression bearing down on me.
I also remember how happy I was when I wasn't restricted by this pain.

Do I just go back to that life and pretend I have no restriction, knowing that further damage makes me a better surgical candidate? Or do I just miss out on the life I want, spending my days trying to avoid the inevitable?

I just don't know the right path or if there is one.
I just don't know.

tl;dr options
(1) do nothing and wait for technology to get better
(a) live life normally
(b) remain an inactive hermit
(2) do nothing, live life normally, suffer herniation, have hand forced
(3) do ill-advised artificial disc at L5-S1
(4) try for (improbable) insurance-covered ALIF
(5) Eat ice cream and hide under the covers for a month or two.