FatGirl vs World

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. 

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.

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.

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. 

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.

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.

This past Friday I had yet another MRI on my lower back.  I'm quite glad that MRI tubes don't trigger my claustrophobia (that has more to do with being restrained or in tight quarters with people). I've had enough of them (6?) to know what to expect and to just see it as noisy relaxation time.

L3-L4:  Mild diffuse disc bulge/posterior disc protrusion.  There is no significant spinal canal narrowing.  There is no significant neural foraminal narrowing.

L4-L5:  Mild posterior disc protrusion, with posterior annular tear.  There is no significant spinal canal narrowing.  There is mild bilateral facet arthropathy.  There is mild bilateral neuroforaminal narrowing.

L5-S1:  Mild L5 on S1 retrolisthesis with uncovering of the disc.  There is no significant spinal canal narrowing.  In combination with moderate facet arthropathy this contributes to moderate bilateral neuroforaminal narrowing.  

 IMPRESSION:

 1.  Mild L5 on S1 retrolisthesis with uncovering of the disc.  In combination with moderate facet arthropathy this contributes to moderate bilateral neuroforaminal narrowing.  There is no significant spinal canal narrowing. 

 2. Mild posterior disc protrusion, with posterior annular tear at L4-L5 causing no significant spinal canal narrowing.

 3. Acute on chronic endplate degeneration changes at L5-S1.  

*exhales* Okay, that was exhausting to type. I can't imagine what it's like to read if you've never read that before.  One of the places I linked to, the Virginia Spine Institute, had a really good paragraph that I thought I'd share to help you all understand why all that mumbo jumbo above equates to pain (in addition to my most-read post about my back, "A Mile In Her Shoes"):

Just like other ligaments, the discs can be injured. The annulus can tear or rupture anywhere around the disc. If it tears and no disc material is ruptured, this is called an annular tear.  The outer 1/3 of the disc’s annular ring is highly innervated with pain fibers. Thus, if a tear involves the outer 1/3 it may be extremely painful. This tear will heal with scar tissue over time but is more prone to future tears and injury. Studies also indicate that annular tears may lead to premature degeneration of the disc, endplates, and facet joints.

 In comparison, the 2015 radiology report seems pretty tame to the 2014 report:

IMPRESSION: Relatively mild degenerative disc disease at L4-5 and particularly L5-S 1. No significant encroachment on neural structures is seen, Comparison with an outside study of 5/11/2014 shows no significant change.

I dunno, part of me wants to throttle these radiologists for saying that anything about my back pain is mild... but... moving on.

This past Monday I had my discogram.  I'm going to annotate what I posted on my Facebook:

my actual discogram

I survived the discogram without fainting or cursing. Though I wanted to do both.

1. Intramuscular antibiotic in my butt hurt like a mofo.
   [It still does even 2 days later.]
2. 5 Novocaine needles on my skin
   [This is so I wouldn't feel the introduction of the needles aimed straight at my discs]
3. 4 needles introduced into my discs (L2-L3, L3-4, L4-5, L5-S1)
   [left quite nice bruises]
4. Then one by one they introduce contrast dye and pressurized the disc until they reached my absolute pain threshold.
   [I assume that they were measuring how much pressure they could put on my disc before I reached my pain threshold]
5. So I felt nerve pain radiating down my leg and then my back started spasming uncontrollably.
   [It was like 7 years of pain compressed into 30 minutes.]
6. At one point it hurt so bad that I told him I didn't want to do it anymore but that I knew I had to
   [The results would help pinpoint which discs were causing the most issues for me -- cause as is the FDA won't let me go 100% Bionic Woman.]
7. One disc hurt so bad that I cried out in pain and he asked me not to be so loud as to not disturb other patients. I said, "Respectfully, I am the only one getting a discogram. I am not concerned how they feel."
   [I'm really proud that I didn't unleash every single curse that I knew at him.  To be fair, though, I was screaming bloody murder.  He offered to give me a towel to bite down on/yell into.  Really?  Thankfully, his assistant, Tia, just kept alternating between holding my hand and stroking my arm.  She was amazing.]
8. When all was said and done I was in a ton of pain but could move around.
   [Very slowly, couldn't stand up straight, and sitting was not fun]
9. Then we got a cab to go to the CT place. My dad told the driver to get me there expediently which was the worst idea ever. Accelerating/decelerating is bad on my back normally... but this was hell.
   [Quicker isn't always better.]
10. CT was quick.
    [Props to my technician who was sweet and kind]
11. I am home now. Took drugs. Got a Jack CAT scan.
    [What a good kitteh -- he has rarely left my side these past few days]
12. Yay! I didn't faint. But that was horrible.
    [I cannot emphasize that enough -- it was HORRIBLE.]

Unfortunately, I can't read the pressure charts that the discogram produced -- except to say that it did its job to cause pain.  Though, I'm not entirely sure if I was able to separate out the pain that I felt going down my leg versus the pain of my entire back having spasms (they stopped once the needles were withdrawn).  I knew going into it that the purpose of the test was to cause pain, but I was not prepared for what happened.  I was in agony from the time he introduced the needles into my discs to the time he pulled them out.  I think I was in too much pain to have my blood pressure drop (vasovagal response).  My self-preservation instinct was to punch this guy in the taco.

I know this isn't the image that they are interested in, but it's pretty interesting

In stark contrast, the CT was quick, easy, and painless.  I loved that the technician (C/Kathy) even took the time to read how I hurt myself and asked questions about it.  Many doctors haven't cared to ask.   The same radiologist for the 2015 MRI completed the report for my CT exam:

l. Mild degeneration of the L3-4 and L4-S discs with some contrast material present in the anterior epidural spaces at both levels. 

2. Contrast material in the left neural foramen at LS-S 1. This finding should be correlated with the patient's physical examination.

So, my discs are leaking, which they shouldn't.  There was also another term that I need to ask Dr. O'Brien about -- "There appears to be some degeneration of the LS-S1 disc with a heterogeneous opacification of the disc seen particularly on the sagittal images."

My follow-up with my surgeon, Dr. O'Brien, is on Tuesday.  Wish me luck.

I haven't done a bullet-pointed/random thought post in a long time so here goes: 

• Attended my second Weight Watchers @ Work weigh in.  I'm -1.8lbs.  Why?  A few things: (1) Being sick makes my appetite wonky
  (2) I'm back to food logging and measuring all of my food. That always works for me.
  (3) No Panera/Cosi  and their sodium bomb lunches
  (4) Could just be a normal fluctuation of weight
  
  I'm glad I asked #WWChat about fruits/veggies being zero points.  I don't eat a lot of meat or processed stuff.  I would always be under my target if I didn't allocate fruits/veggies (especially the ones high on the glycemic index) some value.
  
  I'm interested in seeing what a meeting looks like outside of work. Luckily for me there's a WW center right down the street!
    
• I had a thought the other day about dating: I'm statistically pretty average (except for height, I'm in the 95th percentile at 5'9").  Am I too skinny for the guys who dig larger girls and am I too large for guys who dig skinny girls?  Point to ponder.
  
• I also had a thought that I put on my FGvW Facebook -- Are women culturally trained to be peckish/undereaters or to believe that they have to "earn" their food/nutrition? Are we culturally trained to understate any and all of our appetites, lest we appear anything but virginal, saintly, restrained, or proper? 
• Went to my discogram consultation on Monday morning.
  1.   It's not one of those things where someone shows up at your door playing the Bee Gees and dancing.
  2.   It's not a test to see how well you can do the hustle (darn! those lessons in college still go unused). 
  3.   It *is* (as I already knew) a test where they inject contrast dye into 4 of my lumbar discs to determine how degenerated they are. (Imagine a jelly doughnut. Mine is one that's been left on the counter for a week. They're trying to determine where the jelly is).
  4.   This is *not* going to be fun as I have a weeee little problem with needles and fainting (vasovagal response).
  5.   After all the discs have been injected with dye and he studies where the it seeps, I am getting a CT scan to get more detailed information that they can then turn over to my surgeon and we can make some decisions.
  6.   Papa bear is going to help me the day of my discogram (2/9/14).
  7.   The anesthesiologist/pain specialist who is going to do the discogram seemed either tired, hungover, or super mellow. I'm not sure which. But he seemed interested in re-visiting more epidural steroids (nope, I felt lousy after them and they didn't provide long-term relief). He also wondered why I wasn't taking pain meds (opiates -- hydrocodone or oxycodone) on a more regular basis.  I opt for ice because I don't like walking around in a fog, nor do I want to develop a tolerance for the drugs. After 17 years of back issues, I'm just tired of the stopgap remedies. All of these things make it a little easier to live my ordinary life when I want a spectacular one.
  8.   In related news, I'm getting a new MRI for my lower back on 2/6/14. 
• I said on Twitter today "You know what would be awesome?  If I could run the #Fitbloggin 5k with a healthy back.  That's something to look forward to."  Oh, by the way, I'm co-leading a discussion group with Janet Oberholtzer (OMG, isn't she amazing?) at FitBloggin 2015 called "Living With Pain:  A Survival Guide." 
• The Flu -- Okay, we know it's 23% effective this year and that it's widespread.  And yet, so many of my coworkers are coming in sick.  If I had to get a doctor's note to clear me to return after my shingles (that were on my hip, thus not a threat to anyone unless they decided to lick my hip), why aren't people being sent home if they have the flu or flu-like symptoms and then required to have a doctor's note?  I really hate double standards that don't use good science.
  Oh, and on that note, please wash your hands.

He was cute. He was a cyclist. His OkCupid profile stated that he was interested in mindfulness.  His emails were thoughtful and had correct punctuation. 

Within 2 emails he suggested that he'd like to meet me.  I replied that I'm not smooth and would probably giggle a lot (I do that out of nervousness on dates sometimes).  He replied "I'm actually quite funny, so it's very likely you will not be able to stop giggling until the end and good bye kiss. What is your availability?"  Okay, Mr. Flirty McFlirterson.  Game on. 

Turned out that he was going to be 2 blocks away at an event for his cycling group.  He invited me to join the group.  Okay, casual introductions.  I asked if I could meet him outside the bar -- just to have a chance to do introductions without having to scream (at night the bar is a cross between a club and karaoke).

We met a few blocks away, and already I knew that he wasn't interested.  He didn't maintain eye contact when greeting me and all the chattiness in the emails became one or two word answers.  And then he said it -- something to the effect of "this is not a date."  Um. Okay. Sure.  My second clue was when we got to the bar -- he didn't even hold the door for me (granted, it's not necessary, but if a guy is interested he usually pulls out all the stops).

Two of his friends were at the bar.  He introduces me to one, and then pulls out his chair.  If you were looking at us from the back it was (me) (him) (friend) (friend).  He sits down, puts his left elbow on the bar and turns to talk to his friends. He completely turned his back to me.  I get it, we're not on a date, but I found that to be terribly rude.

Five minutes later more of his friends show up and I just decided to turn on the charm.  I introduced myself to everyone, complimented the ladies on their outfits, their hair, their smiles.  They decided to go upstairs to the dancing/karaoke and I thought it was the perfect time to just slip away because he clearly didn't want me there.  But one of his friends stopped me as I was about to leave and started chatting with me.  He was charming, handsome, and funny.   He knew a bit of ASL.  I taught him some naughty phrases.  I told him my predicament.  He laughed and said "come upstairs anyways."

And it was okay.  His friends were much nicer to me than he was, especially after he disappeared for about an hour.  I had a few great conversations, had a dance party, and even did a karaoke duet with one of them (I killed it, of course).  At some point in the night he ended up standing next to me and I said something to him.  He leaned over to say something to me (including reiterating that it wasn't a date) and put his hand on my butt (which he claims he does to everyone) and I said "Sorry, butt is for dates only."

As the night ended, many of his friends said things to the tune of "I hope to see you out again." Well, considering I'm not an avid cyclist, I doubt that I belong in a cycling meetup group.  But it was just proof that sometimes good things come out of bad situations. I'm a firm believer that you can learn something from even bad dates, can still be gracious and kind even if there's no chemistry, and can even have some fun.

Salty Pirate Face!

I didn't let the dude off the hook.  I don't know about the rest of y'all, but it always feels good to stand up for myself when someone has treated me unkindly.

Huge pet peeve:  apologies that are NOT apologies.  I'm a firm believer that apologies need to recognize that an action caused another person's suffering (taking ownership of one's actions).  "I'm sorry that I turned my back to you and made you feel unwelcome." Don't apologize for how I feel.
And as a friend noted -- this is the guy who wrote "Over the years, I have learned to be quite outgoing and great in social settings."  Padawan, you still have much to learn.