Tuesday, April 14, 2015

I get knocked down, but I get up again


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

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

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

WRONG

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

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

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

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


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

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

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

Monday, March 30, 2015

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. 

Wednesday, March 18, 2015

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.

Monday, March 9, 2015

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. 

Saturday, February 28, 2015

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.