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.