Monday, June 27, 2016

Not for you to understand...

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.

Trust me -- I'm in pain

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. 
I realized while writing this that part of it wasn't about people saying "why are you having surgery" -- it was an exercise in reminding myself about all the reasons why I'm taking a leap of faith

Sunday, June 19, 2016

If she walks like a bitch, and barks like a bitch....

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.

Friday, June 17, 2016

Cha-cha-cha-changes

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.

Thursday, May 12, 2016

Muere lentamente

I know that I've mentioned in passing that my major in college was English with a creative writing minor.  But my love of language started much earlier.  While I love Shakespeare and the archaic stuff that requires a dictionary and footnotes, I love even more poetry that speaks directly to me.

Anyways. This spoke to me especially today -- now that I'm starting to get my health back on track, now that I am able and have the energy to get my life back on track.   (Ignore any reference to Pablo Neruda for this poem (though he's awesome as well); it was written by a Brazilian writer, Martha Medeiros).

He who becomes the slave of habit,
who follows the same routines every day,
who never changes brand,
who does not risk and change the color of his clothes,
who does not talk to people he doesn’t know
dies slowly.

He who makes television his guru
dies slowly.

He or she who shuns passion,
who prefers black on white,
and the dots on the "i" to a whirlpool of emotions,
precisely those that recover the gleam of the eyes,
smiles from the yawns,
hearts from the stumbling and feelings
dies slowly.

He or she who does not turn things topsy-turvy,
who is unhappy at work,
who does not risk certainty for uncertainty,
to thus follow a dream,
those who do not forego sound advice at least once in their lives,
die slowly.

He who does not travel,
who does not read,
who can not hear music,
who does not find grace in himself,
dies slowly.

He who slowly destroys his self love,
who does not allow himself to be helped,
who spends days on end complaining about his own bad luck,
about the rain that never stops,
dies slowly.

He or she who abandon a project before starting it,
who fail to ask questions on subjects he doesn't know,
he or she who don't reply when they are asked something they do know,
die slowly.

Let's avoid death in small doses,
reminding oneself that being alive requires an effort far greater than the simple fact of breathing.

Only a burning patience will lead
to the attainment of a splendid happiness.

Monday, May 2, 2016

The Verdict Is In

If you've been following me on Twitter or Facebook,or even here, you know that I've been off  the past few months.  Not just off but uncharacteristically quiet.  This is what happens when I'm sick, I turn inward and just try to get through what I'm going through. 

The tl:dr (that's "too long; didn't read") of my situation is that I've been sick for 8 months. It started suddenly on September 1, 2015 and it wasn't until May 1, 2016 that we zeroed in on what's wrong.  It's been 8 months of feeling like a zombie -- low energy, terrible reflux, pain in my side (among other symptoms).  

We (hospital, Gastro 1, Gastro 2) ran every diagnostic/test we could think of to figure out what was happening in my gastrointestinal tract that was making me so sick (HIDA, ultrasound, CT, EGD endoscopy, gastric emptying test (yay! nuclear scrambled eggs!), endoscopic ultrasound, and was scheduled for a 24-hr esophageal pH test). 

But I finally caved in to my friend J's offer of help.  His girlfriend (S) is a doctor and wanted to help. I didn't want to feel like a burden or that I was being "that person" who talks only medicine with a person who just happens to be a doctor.  But man, I wish I hadn't waited. 

She zeroed in on something on my EGD results:  
The biopsies show a non-specific response that may be the presenting manifestation of celiac sprue in some patients. If celiac sprue is suspected, suggest correlation with celiac studies to help in the evaluation of the disease process. Other etiologic considerations include toxic reaction to gluten, NSAID use, and infection (including Helicobacter infections in the stomach, bacterial overgrowth, viral gastroenteritis), non-celiac or tropical sprue, autoimmune enteropathy, medication effect (including NSAID's and possibly olmesartan), amongst others.
I had listened to Gastro 1 when he said I didn't have the Big Cs -- Cancer, Crohn's, or Celiac.  But now I felt kinda dumb for not following up on this note.  Thanks to S, we started to look at the pain in my side not as a cause, but as a symptom.  I went to my PCP and brought her in the loop and she said it was worth a shot. 

So we did 2 blood draws (one for my normal blood tests, one for the celiac tests): 





Yesterday evening, I was cuddled up with Jack when I got the message from my primary care doctor: 
The celiac tests are abnormal. The TTG is weakly abnormal but the gliadin test are both abnormal. The reticular antigen is normal. All together I think this is consistent with Celiac...
I welled up with emotion and cried for the next hour or so.  About 95% of the crying was relief in knowing  that I would get better.  Okay, maybe 90%.  10% sad that I wouldn't be able to eat, without modifications, NYC pizza or my dad's apple pie.  (And no I can't cheat: if I have an auto-immune reaction to eating these things, just having it for special occasions can still make me sick.)

I've spent the past week trying to educate myself (I've been listening to Dr. Tom O'Bryan a lot) about Celiac and gluten sensitivity.  First of all: it's real.  For so long I rolled my eyes at people going gluten free as a fad diet, but studies are starting to show that many people have non-Celiac gluten sensitivity (that is, they show an inflammatory response, but no damage to the lining of their gut (the defining characteristic of Celiac)). It's just that some people's bodies can tolerate the inflammatory response better than others.  So while some people may be doing it as a fad, they may actually be doing good for their body, but only if they're eating a healthy GF diet, not a crap GF diet (not just ice cream, diet coke and tequila).  (Tangent: interesting study comparing response to modern vs "ancient" wheat varieties.)  

Apparently, Celiac Disease is just one of over 200 ways that gluten sensitivity can manifest in our bodies (the gluten sensitive end game):  GERD and gallbladder inflammation, for instance.  It perhaps can also explain why my iron, vitamin D, and vitamin Bs are all low (celiac-related malnutrition).  It could also explain why I have bad menstrual cramps, could also have an impact on my spine health, etc.  I'm hoping to see improvements in those areas as well. 

So yeah, the verdict is in:  

FatGirlvsWorld is Gluten Sensitive, possibly has Celiac Disease

The sentence: 

FatGirlvsWorld is now Gluten Free