If Broken, Yet Strong

I really hate truisms like "God only gives you as much as you can handle" (I'm an atheist, but I hear it a lot) or "That which does not kill you only makes you stronger."  On the face they try to say something deep but when you dissect them, it's really just a whole lot of bullshit.  The only truism that I truly belief is "Shit happens."


In March, I had my second foot surgery:  a plantar fasciotomy with heel spur reduction.
The recovery for this foot has been much faster and straight forward than it was for my left foot. My left foot was pretty effed up from two bad sprains when I was younger.  I think this contributed to the bruising and long recovery on my left foot.  My right foot recovery was pretty fast and straight forward.


But nothing can ever be that simple, eh?
HAH!


The x-ray above doesn't actually show the injury (need an MRI) -- but I've been dealing with a peroneal subluxation.  Basically the tendons behind my ankle pop out of place and most always snap back into place shortly thereafter.  When it's not doing that, I'm usually okay, but when it dislocates, it's super painful and gross feeling.  The MRI will hopefully reveal why it's dislocating.  I brought my 2017 CT scan of my feet (from after my feet getting run over) and the ortho could already tell that I have a shallow retromalleolar groove (i.e., the place where the tendons hang out behind the ankle).  That could be one reason.  I could also be dealing with a torn tendon or a torn superior retinaculum (the tissue that holds everything in place).

One of the better descriptions was in regards (to bigoted asshole) Curt Schilling's injury during the 2004 World Series:
Schilling's ankle tendon is normally held taut against his ankle by a thin but strong sheath, similar to sausage casing. The sheath keeps the tendon snuggly in a groove along his fibula bone. This tight arrangement allows for ankle movement, balance, and muscle power. The latter is crucial to Schilling, who generates much of his pitching power from his right foot. 
This sheath somehow has torn, likely from intense stress during recent pitching outings.
"You can't generate muscle power with this injury," said Martin.  Braces, no matter how sturdy, cannot replicate the sheath, she said. "It's not something you can brace or tape well enough to tolerate playing," said Martin. "There's nothing externally that holds it as snuggly as that sheath can internally."
Fun, right?
So I might be facing yet another foot surgery.

Sorry for not blogging more, but I really do feel like a broken record.  Or a broken broken record.  I thought 3 years, 3 surgeries was a bit much and repetitive.  I can't imagine what 3 years and 4 surgeries would make me sound like.

The Agony of Defeat


Dear Universe:

It's been 11 months since my spine surgery.  The first two months after surgery were rough, but my back is feeling much better.

But can we talk about my feet?  I wasn't surprised by plantar fasciitis and heel spurs in both feet.  I went through the same thing in 2007.  And yes, I know having surgery to fix those issues was my choice.  But the rehab has not been fun.  The peroneal and Achilles tendinopathy has been excruciating.

I have been going to physical therapy and doing my home exercises dutifully in the hopes that I will be able to go ahead with the second plantar fasciotomy/heel spur removal surgery sometime soon.


But I was really not prepared for having my feet run over by a LandRover at the DC Pride Parade (by a friend, he feels terrible, so please be kind).


Universe, I feel a bit inundated.  I feel like asking for 1 pain free day isn't too much to ask.  And if you can't give me 1 pain free day, can we maybe start thinking about not adding on to what I'm already dealing with? I know there are people in the world that suffer more than I do.  I know that there's no fairness as to who is dealt what hand.  I'd just like to think that at this point the number of freak accidents that I've had, and the number of chronic issues that I've had qualify me for a bit of a reprieve.  

Universe, it's okay if you disagree. You've thrown a lot at me and I've survived.  But can we try a different tack?

Thanks for listening, Universe.
-Robby

PS:  **fingers crossed that the MMP card arrives soon** (But I don't know if you can help the USPS)

One of Two

(I keep hearing over and over that blogging is dead. That it's all about microblogging now (tumblr, instagram).  FIE!!! I say FIE ON THAT!!! I shall keep writing.)

I super jinxed myself by saying things like "after my spine surgery, I'll be able to _____________"
Body's response was "NOT SO FAST THERE, FGvW."


Okay, this wasn't totally unanticipated.  After my initial injury in 2007, once I was able to stand up a bit better, I was hit with plantar fasciitis in both feet at the same time.  So when my feet started acting up after my spine surgery (I think it's due to having my weight shifted forward, pulling the muscles in the back of my leg tight), I started doing all of my plantar fasciitis protocol:  stretching, heating my feet before bed, etc. and so on.  Also would spring for some extra calf massage whenever I'd get a pedicure. 

Imagine my surprise when after a few months of these shenanigans and that the pain didn't go away, I went to my podiatrist's office and the x-rays revealed some pretty nasty heel spurs (my doc rated them an 8 out of 10, 10 being the worst).  We tried doing a cortisone shot in my foot and some PT, but it didn't work and I was in a lot of pain.

We decided to pull the trigger on surgery (a laparoscopic plantar fasiotomy (they cut through part of the ligament to release the tension and then it scars over) and a heel spur reduction (they drill that pointy looking thing down)) when I started to notice that I was walking weird and it was affecting my back.

I had 10 days off my foot, in a splint, and unable to wash my foot, using the iWalk2.0 (using my cane for balance b/c my other foot is still messed up):


And now I'm in a walking boot (and can wash, but not soak my foot!): 


My foot looks terrible (believe me, I have photos where it looks much worse, but this is the PG version), but it's getting better (with lots of massage to break up the bruise and ice). I get my stitches out tomorrow.  In a few weeks we start talking about the same surgery on the right foot.
 

I know that I sound like a broken record -- but chronic pain, injuries, illness are a BITCH.  If you know someone that suffers from chronic pain or illness, throw a little support their way. It may make a huge difference in their recovery or their life. 

4 Weeks Post-Op of a L5-S1 Fusion

I don't want to go through the whole story of my surgery except to say that I had a L5-S1 fusion on July 15, 2016.  Today is my 4 week surgiversary.  The x-rays are from my 2-week follow-up (on 7/27/16) and my doctor said everything is looking good.  Last week I was able to get back in the pool.  I am still restricted other ways (bending, lifting, twisting, etc.).


For those who have come here because they're about to have the surgery or similar and want to know what they're getting into, I offer you a few tidbits.

1. Plan & pack accordingly.  There were a few things that I purchased for my home or brought with me to the hospital that were very helpful

Hospital
-- my file with all of my diagnostic tests and images (I don't go to any appointment without it)
-- my own ice packs because the ones at the hospital sucked (my room had its own freezer; get two so one can be chilling while the other is in use)
-- external batteries or an extension cord (most hospitals have outlets that aren't in convenient places for people with back injuries) for phone/ipod
-- flushable/disposable wipes (I couldn't shower for 3 days and these helped to feel a little more human)
-- 3/4 length bath robe with pockets (long enough to feel covered, short enough to not trip) and some easy-to-put-on, loose-fitting clothing.
-- sleep mask (you'll want to sleep as much as you can, whenever you're not eating or walking)
-- slip-on slippers with good treads
-- if you plan on using a cane (like my folding/adjustable one), bring it so you can practice with the physical/occupational therapists.
-- a fitness/step counter (trust me on this one -- not only did it motivate me to get me out of bed, but it also helped me measure how much was too much)
-- box of chocolates for the post-anesthesia care unit nurses in case you throw up on them (I didn't ... this time)

Home: 
-- Zero Gravity Recliner (unless you already have a fancy one, this is an affordable alternative -- and it's about the only thing I can sleep in)
-- Reacher/Grabber (you will use this all the time)
-- Toilet Seat Riser (the one I linked to is easy to put on/take off -- if your toilet is in the middle of Siberia, you may want one with handles)
-- Shower Seat (showering can be exhausting and sometimes it's just nice to sit down and take a break)

2. Your posse is everything.  Recovering from surgery is a lesson in humility and I learned that the first time I had to ask a friend help me take a shower, or feeling like an asshole for asking a friend to clean my cat's litterbox. Let people help you, let people love you. Surround yourself with all the people who show interest in either helping you physically (I used a Google Spreadsheet to coordinate visitors/helpers) or mentally/emotionally (I have a Google Hangout with people who are dedicated to keeping my head in the right place). You will need their strength on the days you don't have any.

Don't go it alone -- you will need someone with you at home for a few days/nights as you're still dealing with pain and instability.  This person needs to do a few main tasks:  (i) keep you hydrated (toss a little Miralax in whatever you're drinking) (ii) keep you medicated/on schedule (if you wait until you're in pain, it's too late) (iii) keep you fed (you'll need the strength) (iv) kick you out of bed (get up and walking every few hours).

3. Spine surgery rehab is non-linear.  You'll have good moments and bad moments, good days and bad. Some of it is predictable, some of it is not.  Try to focus on your progress and make adjustments as needed.  If you focus on tiny setbacks, you will drive yourself bonkers. And if you find yourself going bonkers, lean on your posse.

4. Have a good sense of humor.  Like I said above, this can be a really hard recovery both physically and mentally/emotionally. Everything you do will be affected by the surgery (and it already has been by the injury) and it will take time to recover.  Take the smiles when they come, seek them out if there aren't enough. And with that in mind, I present to you, the many faces of Lord Squigglesworth, II:





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.

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.

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

Heavy

I had an appointment with my primary care provider, Dr. F today to touch base on all of the fun medical stuff going on with me (tl;dr -- 4 months of pain underneath my right ribs, reflux, vomiting, etc.).  

She reaffirmed that I'm doing everything as I should be doing, but that I might be one of those "medical mysteries" that you read about in the Post.  In other words, multiple doctors have run all the standard diagnostics (blood, CT, ultrasound) for the most likely causes for the pain (friggin gallbladder), but they're not yet able to explain why I am in pain.  Doctors even did the next level of testing (HIDA, EGD endoscopy, gastric emptying study) and couldn't find a cause for everything going on (just confirmed some symptoms).  So we're moving into more focused tests (abdominal MRI (Jan. 13), endoscopic ultrasound (Jan. 25)).  We briefly discussed the possibility of needing surgery down the line to help with a diagnosis.

It could still be my gallbladder, could be a Sphincter of Oddi dysfunction, it could be an alien just biding his time in my gut before he breaks out in song, it could be (though unlikely) a muscle tear in my side. 

One moment that kind of took me by surprise was the concerned face she made when we talked about my losing weight.  She knows that this number represents 2 months of throwing up (September/October) and 4 months (September–present) being skittish around food and not exercising.  She knows that I haven't been taking vitamins, feel really weak/tired because I'm not eating enough calories, and that generally I feel like shit.  She'd rather me weigh more and feel better than to see the scale go down and me feel so broken.

In other fun news, based on my blood work/pap smear at my annual obgyn exam, I got to have a colposcopy on 12/23.  They took two cervical biopsies. I got the results back today and.... benign squamous epithelial cells. So we'll keep an eye on that going forward, but a little good news today.

Exhausted

A few months ago, I wrote about my fun trip to the hospital because of abdominal pain that I was feeling.
Timeline
9/1 & 9/2 - Hospital
Bloodwork, Ultrasound, CT, HIDA (nuclear test of gallbladder function). Left hospital with anti-nausea meds (Bentyl and Zofran). They recommended a follow-up with a gastroenterologist. 

9/11 - went to Dr. C.; didn't have best impression of him (he didnt even touch me/investigate during first exam). Gave me trials of Dexilant (GERD meds) but no prescription. Recommended that I take Prilosec (over the counter anti reflux meds). Scheduled me for endoscopy.

10/9 - Upper GI Endoscopy (EGD) (camera down my throat to view esophagus, stomach, and duodenum).  Revealed irritation (erythema) consistent with gastritis/reflux. Biopsies taken during EGD came back negative for ulcers, cancer (Barrett's Syndrome), Crohn's, celiac, and Heliobacter pylori.

I pretty much was throwing up every day or every other day in September and October. I am on a low acid/low-to-no fat diet (with a few other nos: caffeine, alcohol, gum, onions).

took a nap under a Geiger counter. 
11/5 - went to new doc (Dr. Z). He prescribes a stronger anti-reflux meds and a gastric emptying test. Stronger anti-reflux meds help for the most part. I only throw up about once a week now and it is largely based on me and my diet. Drinking too many liquids is usual the culprit.

11/18 - Gastric Emptying Study (see photos) (eat some radioactive eggs and see how long it takes to move through upper GI). Just got the results and they are normal. This rules out gastroparesis (slow motility of stomach)

12/14 - follow up with Dr. Z.  [Edit:  we talked about life since on omeprazole -- which has been better, but not perfect.  I'm still waking up with acid in my esophagus.  He's prescribing something for overnight.  We talked about my diet. He said that I should be able to eat some of the restricted food groups in small portions, but I told him that I've not had any luck with that.  I still have the pain on my right side.  He said at this point it might be musculoskeletal (i'm dubious about this...).  But that there are more tests we can do that could help figure out what's going on (and could also help determine if it's musculoskeletal) -- an endoscopic ultrasound and an MRI.  If those prove to be inconclusive, it may be the time to talk to a surgeon.]

Complications
During all of this, I had a ton of stuff going on at work as well as an office move.
Thanksgiving made me terribly sad cause it is my favorite holiday and I couldn't eat my favorite foods so I didn't go. Glad I didn't go. Spent most of the day in bed crying between trips to throw up.

Thoughts
I have been really frustrated because it is 3.5 months later and we are no closer to a diagnosis. Chronic pain (back) + chronic illness (gut) has been a really tough one-two combination. Feeling beat up is an understatement.

As drinking liquids tends to trigger my nausea (no matter how slowly I drink), I have been operating pretty dehydrated and this hasn't been good for my back. I tried holiday shopping yesterday and after 30 minutes and one bus ride I was already limping (and was without my cane).

I spend a lot of time in bed because I have no energy or desire to engage in life any more than I have to. At least Jack is a cuddle monster.

I had myself a good cathartic cry yesterday. I know many people in the world have a harder life than I do -- no doctors, no medicine, no sick leave from work, no insurance, no cuddly cat, no warm bed, no roof.... but as people keep asking me what I want for the holidays, it is abundantly clear that I don't want or need trinkets. I just want my health.

Baseline

On September 27, 1994, my mother passed away from a cerebral aneurysm that put pressure on her brain, hemorrhaged, and put her in a coma from which she never recovered.

Some doctors and scientists think that there might be a genetic/hereditary component to aneurysms. As such, my primary care doctor has wanted me to get an MRA for quite a while. The test is like the reverse of an MRI.  An MRI's image filters out the moving parts of your body to create a picture of what is not moving.  An MRA filters out the still parts to create a picture of what is moving (i.e., my blood).

The result is this:
looking straight at my face
 I think my brain is rather photogenic.

Looking at the right side of my face
I am expecting an unremarkable radiology report to come back from this.  But I thought the stills were too cool not to share.

Not Dead Yet

So...  I've not been writing that much on my blog mainly because I feel like I'm repeating myself regarding the back stuff and then I worry about my blog turning into one big buzzkill.  Well I'm going to try and rectify that for everyone that hasn't seen on social media.

On September 1st, I called Teladoc because I had some pain in my upper right abdominal area and wasn't sure whether that was a "Go to your PCP" type of issue or "Go to ER, you're about to explode" issue.  Teladoc went with the former so I called my PCP and asked if I could come in sometime that week.  I get a call back to come in immediately.

She poked around a bit.  She knows that I live on the higher end of the pain scale, so for me to say that something is painful means that it's (1) new pain and (2) above my regular threshold.  She wants me to get tests, but says that I can get them faster if I go to the hospital.  So that's what I did.

I got in a cab and took myself to the hospital where I had blood drawn by a really hot nurse (and almost threw up on him/fainted).  In addition to the blood tests, they sent me for an ultrasound, and a CT scan.  Everything came back pretty unremarkable except for a few elevated blood levels that could be explained by having thrown up the night before.  So they decided to admit me to run a test the next morning.

The most frustrating part of being in the hospital was the lack of communication between the ER doctors, the surgeon, the nurses.  They would ask me what the other ones said.  Um. Don't you have my chart?  

Second most frustrating part was the speculation.  They were throwing out possibilities of pancreatitis and pancreatic cancer.  For a good 20 minutes I was having a serious talk with myself about my own mortality and what I had yet to do in my life.

At that point, I called my brother and asked him to bring me a change of clothes and my glasses (so I could take my contacts out), my external phone battery, and of course my otter. He sat with me in the ER for a bit and we had a really good talk about life and stuff.

The test the next morning was pretty effing cool.  It's called a HIDA.  They inject me with a radioactive isotope (technetium 99) while lying underneath a Geiger counter.  They record how well my liver passes the 99Tc to my gallbladder. So yeah... for 6 hours I was radioactive. Sadly, no spidey powers. (notice the metal syringe in the photo below -- that's so the technician limits his exposure)


Fortunately/unfortunately, my liver and gallbladder did their job.  We were no closer to an answer. Odd thing was that I was in quite a bit of pain before the scan (they couldn't give me anything stronger than Tylenol the night before the test and I hadn't eaten in 24 hours at that point) and after the test I was in less pain.  They offered to keep me at the hospital and give me more fluids, but at that point, we still didn't have a diagnosis. I was discharged with instructions to follow up with a gastroenterologist.

I went to the gastroenterologist on 9/11 and he reviewed my blood work and test results. He wants to do an endoscopy (on October 9th) of my upper GI tract to get a better idea of why I'm still in pain (and can't really handle meat, fats, alcohol, carbonation). He thinks I may have some biliary sludge that just didn't show up on the tests.

My gut instinct (see what I did there?) is that my gallbladder will be removed.
I just want to get this over and done with because I'm just tired, irritable, and hungry.

But not dead yet.

Let's Get Physical(s). I Wanna Get Physical(s)!

In Part 2 of Down Size, Professor Ted Spiker says that we need to inspect ourselves both subjectively (perception) and objectively (data). 


I've been avoiding the objective review.  

For months, I've been carrying around the reminder card that I needed to get my annual exam at the gynecologist (it was dated early this March; my GP physical is due in December) (Also -- only 17% of women get their annual? whoa.).  It's no big deal -- except that my nurse practitioner (Flynn) was the first person in the medical field to really make a big deal of my weight loss. Like a really big deal, hugs and all.  She's an athlete, an instructor, and a really awesome and supportive person.  



I really didn't want to go into her office with a weight gain. 
That's exactly what I did yesterday.  

It felt like a mix of going to the principal's office and going to confessional.  But there was catharsis in being able to say that I knew the why and the how of the weight gain. Because I knew how I got to that place on the scale, theoretically I could retrace my steps and find my way back down.  Thankfully, I know that I have her support. It means the world to have supportive, pragmatic, and honest medical professionals on my team


I realize that isn't the case for everyone.  I think it would be understandable if I had a distrust of doctors based on my past experience with them and the failures in my mother's diagnosis and care.  But I never held my mom's death against the entire medical profession, just those few people that so supremely messed up. At the end of the day, medicine is a practice that requires both the practitioner and the patient to work together to establish and achieve goals. That may take trying out a few doctors.  (Tangent:  if you don't invest in the doctor and trust them by telling them the truth, how can you get anything worthwhile out of the process? I know far too many people that tell white lies to their doctors. In the end, they're only handicapping their doctor and reducing the level of the care they receive in return.)


Even if you don't have an issue with doctors, getting to the doctor for an annual physical may still seem like a chore versus an act of self care.  For instance, the other day my dad let me know that he was going to his annual physical (hi dad! not trying to embarrass you here).  And I said "Love you! And thank you for loving yourself." He asked me how going to get his physical was "any indication that [he] loved [himself]." I tried to re-frame the concept by pointing out that when people love their cars and want them to last long, they perform routine maintenance and tune-ups.  That's what annual physicals are.

My blood work should be back the end of the week.  I requested that they do a full panel (including hormone levels, Vitamin D, STDs, etc.).  The next appointment that I need to make is for a dermatologist.  I haven't seen one for a while.  I need to find one that understands that skin picking is an issue that I'm aware of, have tried all sorts of treatment, and that management is just as good as a cure for me. 

Primum non nocere


Growing up, I went to the doctor quite often and was prescribed medicine a great deal of time.  In my adulthood, I wanted to be more proactive with my heath, which meant having a strong relationship with a doctor that I trusted.  My no-frills-or-sugar-coating doctor (who told me many years ago (in case I didn't know already) that I was fat), Dr. Roche, decided to leave the practice, leaving me to find a new doctor. 

Dr. Fuisz
I took to my personal Facebook to get recommendations.  One name was recommended multiple times:  Dr. Alice Fuisz.  I booked my first appointment for 12/12/13 -- the one-year anniversary of my neck surgery.  In a word, Dr. Fuisz is awesome.  I especially love how organized her practice is.  They had me come in before my first appointment (my yearly physical) so that we could discuss diagnostic test results during the appointment. 

I also loved that I was fully dressed the first time meeting my new doctor.  So many times one is only wearing a flimsy cloth gown the first time they're introduced to a doctor.  She and I went over my patient intake forms, family history, and any preliminary concerns/questions that I had, as well as the results from my tests. 

We talked about the challenges of weight loss and my desire to continue to drop body fat, but also not knowing where my body is going to end up because I've been overweight since I was 8.  We talked about certain aspects of my blood tests that could be improved (such as my cholesterol). We also discussed the fatigue that I've been feeling, despite getting exercise, eating well, and having a good pre-bedtime routine (she pointed out that it's probably due to my cat getting sick in the middle of the night).

Dr. Fuisz also took copious notes for herself regarding things that she wanted to further investigate and subsequent tests that she wanted to run -- such as whether I've had an MRA scan (there are some schools of thought that believe aneurysms are genetic) as well as my ferritin and B12 levels (both were low normal and can be improved with supplements).  My Vitamin D is still  much better than it was than when I first tested for it in 2010.  I may do a sleep study to make sure that my fatigue is nothing more than being hypervigilant regarding Spike.  (Have I ever mentioned that I used to sleep walk and sleep talk?).

Then she came down hard on me -- giving me 5 reasons (with increasing guilt levels) as to why I should get the flu vaccination.  I was putting up a good fight until she mentioned that one can be a carrier/contagious without feeling sick.  I'd hate to get someone else sick (especially my niece).  She also told me that I was overdue for a tetanus booster.  She's been using a combo tetanus-pertussis booster because there are so many anti-vaccination people out there now that whooping cough is now a thing again.  I'm happy to report that I didn't faint, vomit, cry, or have a breakdown whilst getting the shots.  And I didn't do what my mom did, and treat myself to ice cream after.  Adults know that shots are just a part of life.

So, I have some homework to do and some choices to make (as to whether or not I want to do further diagnostics) and some referrals to use.  But I wanted to share all of this with you because I want YOU to get your yearly physical.  Make it a priority.  Many people who are overweight/obese avoid the doctor because they don't want to address their health and weight issues. You'll hear terms like "doctor shopping" and "weight bias" to explain why people search out certain doctors or why people avoid others. 

The bottom line is this:  neither your doctor or yourself are completely blind to what's going on with your health.  Your doctor should be the one person in your life telling you the plain and honest truth about what's going on with your body.  Glossing over the issues isn't going to help you address them.  So be proactive and ask your doctor to step up to the plate and help you make a positive change in your life.  Challenge them to rise to the occasion or to recommend another doctor that can. 

The great thing is that with a few modifications (some small, some bigger) you can see an instant improvement in your health.  How do your diagnostic tests change after adding a little more activity each day, introducing some new, healthier recipes into your diet, or going to sleep half-an-hour earlier?  Reap the dividends of a healthier lifestyle and have the lab results to prove it (no matter your weight).

Watson & Crick in my Neck

I think a question that many health gain/weight loss bloggers get is "If you could change anything about your body, what would it be?"  Some people interpret it as a "where do you want more muscles/less fat?" question, some interpret it as a plastic surgery question. But why limit yourself to aesthetics? If I could change one thing about my body it would be this little mofo:

source
Disclaimer:  I love certain aspects of my genes, and the things that make me uniquely me.  I also realize the futility of this exercise.

So why am I hating on my genes?  (1) my greatest challenge and foe is a hereditary condition (**shakes angry fist at degenerative disc disease**) (2) No matter how hard I try, there are just some things that I cannot change with good diet and exercise. (And don't worry, there are many parts of my genes that I would never want to change...)

Case-in-point:  Last Wednesday, my employer had the annual health care expo and screenings.  You can get assessed for stroke (I didn't do that one), osteoporosis (my bones are very strong! I have a T-Score of +2.5!), body fat (that one came along with a sales pitch to a gym that I didn't want to join), blood pressure (it was high before the blood draw and normal after, per my usual re needles), and a fasting or non-fasting blood test for cholesterol and blood glucose. I also shocked and awed the health screener by knowing my BMI on the dot, but then dismissing it as a poor measurement of health.

Here's where things get fun -- I had a case of the blarghs last week.  My stomach was off, I wasn't eating much, didn't really go to the gym much at all.  Total blarghs.  So I wasn't surprised when my non-fasting blood glucose was 93 (this is in the "normal" range for fasting, but way below normal for someone that just ate--I attribute that to the blarghs).  What I was surprised by were my cholesterol numbers.

Lipid PanelNormal Ranges
Cholesterol, Total100-199
Triglycerides (want lower)0-149
HDL (want higher)> 39
VLDL5-40
LDL (want lower)0-99

My total cholesterol was 163 (2012 physical was 142), my HDL (good cholesterol) was a 41 (2012 physical was 44), which puts my LDL + triglycerides (bad cholesterol) at 122 (2012 physical was 81).  So the total was within "normal" range, but the ratio of HDL to LDL was off.   Good news is that I won't die anytime soon (considering my maternal grandpa died from a heart attack this is good to know).

It gets better from there -- a very nice person from the health screening company sat me down with a concerned look on his face:  my cholesterol was distressing him.  He asked me "So, do you know what kind of foods cause high cholesterol?"  Okay, fine, we're going to play the "fat person needs to be educated because they clearly don't know how to operate their body" game **eyeroll** "foods that are high in saturated [animal] and trans [packaged foods] fat....but it is more complex than...." and then he cuts me off to say "Cheetos, Twinkies, and McDonalds."

But since this was at my place of employment, I didn't let my inner snarky person go to town and educate the educator on health care bias OR how feeling sick can skew a test.  Granted, I do like some Cheetos once in a blue moon (mmm....blue moon beer), but I never put crap like Twinkies or McDonalds in this high-performance machine.  Don't look at me, see someone who is overweight, and assume that I do, okay? Then he threw out the possibility of meat being the issue.  I'm not a vegetarian/vegan, but I don't feel the need to eat meat at every turn and in massive quantities.  [I will say though, that if you love red meat, think about trying some buffalo/bison.  It's much better for you than beef because bison are angry sons of bitches that will tell you where to put it if you take their grass from them.]  So I whipped out my phone, went to my Google Drive where I keep all of my health records and showed him the past few blood tests and shut him down.  It really was the blargh skewing my numbers.

This is why I got so mad at the "fit mom" story -- you can't rely on one photo, or one blood test to make a definitive determination as to a person's health or fitness.  Case in point--a friend of mine at work had a cholesterol reading a bit higher than mine but she's a marathoner with an amazing resting heart rate. On the other side of the spectrum are people with amazing blood test results but who aren't physically active and eat things other than rabbit food.  It's about metrics/blood tests, behaviors, and being able to outrun/outfight the zombies.

So much of how our body operates owes to how we are hard coded.  We can work within the parameters that our DNA allows, but some things just can't be overcome.  If you have a family history of something like high blood pressure, you can exercise all you want and you can decrease your blood pressure, but it will always be an issue and a consideration for you.  So, if you can, talk to your family candidly about your shared health risks.

[After the health educator, I got into it with the ergonomics people giving bad advice about how to sit in chairs.  One of the people, who was also a physical therapist, also agreed with me that passive vs. active sitting is an issue that their pamphlets don't address and that she was encouraged by my rage.]

Put a little love in your heart

This morning I checked my Twitter feed and saw this message from @MelKettle:
When my mom passed away, my family made the decision to donate her organs.  While going through that process, we learned that many of her organs were not useable (not a surprise considering she was a smoker).  What was a surprise was that the doctors had found evidence of a heart attack.  Apparently when she was younger, my mother experienced a heart attack but was never treated for it (women are statistically more likely to ignore the signs of a heart attack, which are different for women than they are for men).  

This is alarming because (1) my paternal grandmother died from a heart defect (she was 30) (2) my maternal grandfather died from a heart attack (he was 50) and (3) my mother died from a cerebral aneurysm (she was 44).  I don't want to be part of the trend of young deaths. 


The American Heart Association has lots of great information about how to be heart healthy and has highlighted a few areas also crossover into the whole weight loss/health gain arena:


Mel was quick to point out that "a basic blood test can tell you a huge amount." And well you need to get your butt to a doctor to get that blood test.  My last physical/blood test was July 2012 (though I did get a pre-operative blood test in Dec. 2012 before my neck surgery, it was incomplete (it didn't include a fasting glucose test)).  So I'm going to go ahead and schedule an appointment. 

Have you gone to the doctor in the past year for a comprehensive physical and blood test?
Have you discussed with your doctor what your results mean?

You give me fever...

Last week I wrote about how my life had become a series of drinking events and how I wanted to get a little more variety added in to the mix.  I should have specified "healthy variety."  Because the universe has one helluva sense of humor.


I had a 101º-102º fever Saturday (didn't get to go to ShamrockFest), Sunday, Monday, Tuesday, Wednesday, and my fever finally broke on Thursday -- just in time for my lovely house guest -- @HalfofJess (check out her blog) (who like all pandas, was brave in the face of danger)!

(1) In my 31 years on this world, this is the first time I've ever had the flu.

(2) I've never had the flu shot -- and I don't necessarily believe that as an otherwise healthy adult that I should be getting one.  But look, here's some info on the efficacy of this year's shot.

(3) Holy hell.  It felt like my eyeballs were boiling at one point.  For 5 days all I had in terms of calories was Gatorade (mmmhmm orange) and Toaster Strudels.  Don't judge.

(4) I'm still not 100%.  My stomach/digestive system is still a little behind in rebooting itself. But otherwise, I'm feeling much more human than I did a few days ago.

(5) I wonder if my immune system was just compromised because of surgery and then the mysterious skin issue (I have yet to go to an allergist...and yes, Riley, I will be doing that soon).

(6) Between mysterious skin issue and the flu now, and surgery rehab, I've missed 3-4 weeks of running, which means I have 1 week to run 39 miles.  I've done it before, but I don't think it'd be prudent to stress my body to hit an arbitrary goal.  That would be entirely contrary to the GoTheDist 2013 theme of "Rebuild Yourself" -- to not let my body recuperate from a nasty virus.

So it's Friday night -- Jess is going out with friends and I'm going to curl up with a good book, or three, and just try to get my energy up.  Because tomorrow I'm experiencing another blogger influx in the form of a Tweedie

The Saga Continues...


1.  As of last week, I finally have a floor!! It isn't what I would choose, but it's what my building's insurance paid for.  And well...it's a floor (more floor!) (and new floor in the kitchen, as well as some new mirrored closet doors). It's a huge relief to, after 50 or so days, restore my sanctuary.  However...
Jack getting IV fluids and
modeling the cone of shame

2.   There was a bit of a crisis while the crew was installing the new floor:  they didn't call me to tell me they were beginning the work of installing the parquet so I could get the cats out of there (they previously said that they could work around the cats).  I come home at lunch the first day of the project to meet with the lead contractor (to discuss the scope and schedule) and find that (1) they had begun laying down the adhesive and parquet and (2) that my cat, Spike, had walked right through the adhesive (and tracked it all over my apartment.  Did they call me to tell me this? No.  So by the time I get home, the adhesive had already dried.  I was LIVID.  I bundle up both of the cats and take them to the vet where they had to sedate Spike to remove all the adhesive from between each of his four paws.  Poor little woozle and $190 later...but....

3.   While we were at the vet, I noticed that someone had urinated blood in the carrier.  My money was on Jack and unfortunately it was right.  Back in May, I was concerned about some of his behaviors (frequent trips to the litter box) and we had taken him to the vet and done some urinalysis that came back negative for a UTI.  However, as we now know, it was a fairly large struvite bladder stone!  I took him in this past Wednesday night to had surgery the following day to remove the stone.  I visited him on Thursday night and was able to take him home on Friday (approximately $1650 later), but I'm still monitoring his recovery.  I had to take him in the night before because....
Notice how pretty my brain is?

4.  That same Thursday morning, I was scheduled to get some fancy 3T MRIs on my lower back and my neck.  Turns out, I'm quite photogenic.  Based on (1) my friend Evan's expertise with MRIs, (2) the MRI technician's opinion (3) the radiology report and (5) my experience with my own scans, we could tell a few things:   (a)  here's no new damage after 5 years for my lower back (b) no new damage after 1 year for my cervical spine (c) I have a brain! and (d) neither the best case scenario (the discs put themselves back into place) or the worst case scenario (more discs were bulging/herniated) came into play. 

5.  Today I met with the spinal specialist that Evan (my wonderful medical sherpa) recommended.  Not only did he have fantastic hair, but he was a real laid back dude with the time to talk to me about my history, where I'm at now, and where I want to be.  He digs that I'm an active person and this is limiting me.  He expressed hesitation regarding doing either a fusion or an artificial disc replacement ("ADR") on "someone so young" (why thank you doctor...).  And so he wants me to do an intermediate step before we get there.  My previous epidurals were steroids injected into the epidural space and were meant to help relieve inflammation around the herniated/bulging disc.  He wants to try a more targeted approach and see if a a "root sleeve injection" where the steroids are injected closer to where the affected nerve lives (little bugger we know where you're hiding!!). If that doesn't work, he favors an ADR procedure as compared to a fusion, because an ADR would (1) help maintain the integrity of my cervical spine (i.e., it wouldn't increase the responsibility of the surrounding discs as a fusion does) and (2) would preserve the range of motion (a 1-level fusion wouldn't mean much of a change in the range of motion, but the ADR gives my other discs a better chance of not needing to be addressed). Did I mention that he has fantastic hair?

From the time he was my date to a friend's wedding in NY.
6.  I'm going to take a moment to just publicly thank my medical sherpa, Evan, for all the help he's given me.  I can't sing his praises loud enough.  He has enough experience in the medical field to (a) help me navigate insurance (**shudders**) (b) help me find the right doctors (based on feedback he's received personally, and the professional opinions of the doctors he works with) and (c) keep me focused on the task at hand -- which is about finding a long-lasting remedy, not just a BandAid.  While I love my family dearly, we're just not equipped to handle medical issues.  Evan anticipates each step and makes to easier for me to focus on healing, not the administrative stuff that ramps up my anxiety levels.  So... Evan, I love you.  I hope the universe bestows a heap load of karma on you (apple pie is not karma, it is apple pie). 

7.  I've known Evan since college. And I know his very dry sense of humor.  Sometimes he just loves to pull my leg.  As we were leaving the MRI (yes, he's such a wonderful sherpa that he met me at my 7:30 am appointment), he tells me that he and the MRI tech doing the scans noticed an anomaly on my kidney.  I think he's just trying to pull my leg or to get me to relax after being in an MRI for so long.  But he assures me that he's not joking.  Chances are that it's nothing other than a fluid-filled cyst hanging out on my kidney.  They're pretty common and usually benign.  Most people don't know they have one until, like me, they go for a diagnostic test for some other reason.  Still, not going to tempt fate, and will be following up with my internist. 

So, now that I have a house, have two healthy cats, and am addressing my own medical issues, I feel a lot less stressed (still residual stress from not sleeping well, having gained weight, and the amount of money leaving my bank account).  I've gone from a 7.5 to a 3 or 4.  The feeling of always being in an adrenaline fight-or-flight panic mode has dissipated.  

Again, I want to thank everyone for bearing with me this past year where all I seem to talk about is being injured, chronic pain, and wanting to eat my feelings.  I also want to thank you for being there for me even if/when I have nothing to say.  I feel the love,  I really do.  Notably, I just received a card via snail mail from the amazing @coracast (who I affectionately cal "Lil" as in "lil sister" and she calls me Big Sis) with the sweetest words of support and love (as well as a prezzie!).  

I know how everyone makes vision boards to help them focus on their goals.  I think I want to make the most selfish board ever -- a love board -- a place to put all the reminders that I'm valued, that I'm heard, that I make a difference, that I'm loved.  You all have helped turn this stoic/stubborn/I-can-do-it-myself hardass into someone willing to reach out and accept help. 

You humble me with all the love and support.  Especially cause you know that I can be a massively arrogant megalomaniac sometimes.