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...

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.

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.

Testing My Limits

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.

The 5/11/2014 MRI radiology report read, in pertinent part:
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.  
 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.