FatGirl vs World

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

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

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

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

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

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

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

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

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

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

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

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

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


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


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

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

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

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

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

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:

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.

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 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.

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.