FatGirl vs World

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.

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).

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...

Stephen King wrote in his book "On Writing: A Memoir of the Craft,"  "You can, you should, and if you're brave enough to start, you will." (emphasis added)  He called this a "permission slip." Couple this with Ranier Maria Rilke's "Letters to a Young Poet" (which I talk about here) and the whole picture emerges:  when faced with the questions of who we are and what we want to be, we need to harness our passion (Rilke's "I must"), couple it with the strength of our heart (courage), and not get in the way of our own potential.

took a nap under a Geiger counter.

So two things led up to this post -- a post that will mix metaphors and have your heads spinning:

1.  I saw #RunChat a week or so ago and popped my head in.  I love how supportive David (@RunningBecause) is, but the fact is that I'm already motivated -- that has rarely waned (except when it comes to diet because pizza is delicious).  I've been champing at the bit. Perhaps my running life movie (see below) shouldn't be titled "Out of Gas" but rather "Broken Down Jalopy."


I was okay when it was just my back.  But now it's gallbladder(?) + back.  I feel very overwhelmed by this.  I just want (1) a healthy day (without feeling like I need to vomit all the time) and (2) a day without pain (either my gallbladder or my back--which is feeling the effects of the dehydration) (and (3) a day without my ear ringing... but that's not wearing me down so long as I have a kitteh bent on purring in my ear at night).

2.  I've been reading Martinus' blog (@300lbsandrunnin) lately and really identifying with what he's been going through. Life is hard sometimes. It's messy. It's ugly. And always having to start over is excruciating because it's not like starting with a clean slate at the start line, or as  I said to Martinus, "I see it like wanting to climb a mountain but first having to dig your way out of a cavern with your bare hands." You exhaust yourself even before even getting to the point where you feel like you can once again take up fight.
I feel like I'm underwater and unable to get my head above the surface. Is it depression? Maybe? I guess? I feel very much like I'm never going to get to a place where my body and mind are in the same place. It's frustrating. I'm angry. I'm in mourning. And I'm also terrified. I don't know the way forward.  

I was thinking about the tweets above when I remembered my swim lessons as a kid. They taught me the survival float -- face down floating for when you're in open/rough water (floating on your back only works in calm water). This strategy conserves energy for when you need to use it.

Perhaps I need to remember that I'm using my energy to handle the waves and that pretty soon I'll be in calmer water.