October 25, 2014

A journey of 1,000 miles begins with one step....

Many of you have been so kind to ask about my diet and my back, I thought I would write about it so that it would help clear up some of your questions.  Deep breath....here it goes:


The Back Story

When I was 12, I was diagnosed with a severe case of scoliosis.  A spine isn't supposed to have any curve in it, so 0 degrees would be ideal...mine was 45 degrees crooked. I was recommended for immediate spine surgery to stabilize my continuously twisting spine.  So at 13, I left gymnastics, dancing, and softball for surgery at Merritt Hospital in Oakland.  What was supposed to be a routine surgery to install a rod in my back, turned into an instant nightmare as my spinal cord was pinched during surgery causing paralysis to my left leg and I wasn’t sure if I would walk again.  A week later I was in surgery again to remove the rod placed in there to take the pressure off my pinched spine.  The prescription was to lay horizontally, to allow the vertebrae to heal and the bone fusion to set, and give my leg the time it needed to gain back feeling and strengthen it.  My dad was so sweet during this time.  He made me a “fireman’s back board” so that they could lift me in and out of bed, up to the sink to wash my hair, or into the car for an afternoon escape out of the house.  He also found me a furniture mover for me to lay on so that I could scoot around the house. In fact everyone was so helpful, to come stay with me, make runs for my favorite foods, and bring me things to entertain me, but I really just craved to be normal.  As an independent person, I was having the hardest time relying on others to get around or perform daily tasks...so to have any bit of freedom to get around on my own or do things for myself, I was so grateful.

Eventually, I was able to walk again, but the nightmare continued.  My spine didn't fuse in one spot, and when I finally stood up, the fusion fell and all that time spent laying flat was all for not.  In fact my spine was worse than before....65 degrees crooked.  So, a couple of months later I was put into surgery again to add rods to hold my spine straighter.  My surgeon was successful this time, but the curvature settled in at 45 degrees crooked....exactly where I was when I started this whole debacle.

Over the years after this nightmare, I felt ok.  I definitely noticed when it was about to rain, as the barometer changes really made me ache.  Cold weather was a challenge as well, as the dull ache could sometimes make facing the day a challenge.  However, my spirit wasn't dulled.  I was able to return to gymnastics as an instructor and I was able to take tumbling as a PE credit in college.  I was able to ski quite a bit too, something I learned at 16 and really loved.  But I would say that things regarding my back were manageable for a long time.


The Car Accident

In the fall of 2007, I was in a car accident.  At face value, it wasn't that bad.  My car was rear ended and as a result, I was pushed into another car and thereby crunching my car like an accordion.  I walked away, a little sore, but without a scratch and went on about my business.  I didn't really start to notice the effects until about 2 years later, but my back would constantly ache.  One by one, I had to give up skiing, dancing, gymnastics, doing my long distance breast cancer walks...pretty much all forms of exercise because of my aching back.  Consistently I started seeing spine specialists in Sacramento, as my surgeon from when I was a kid had long since retired.  They all had different opinions on what to do: One suggested that I could take up to 3600 mg of Motrin per day as a relief.  Another freaked out about this treatment and the possible damage to my liver, so he prescribed a pill to take care of the pain.  One wanted me to attend pain classes to learn about acupuncture and tai chi.  I started seeing a psychiatrist to deal with the terrible depression setting in because of being in pain all the time.  Yet another medication prescribed. Great.  This drug's side effect is to cause weight gain.

I started to put on a ton of weight.  I was so lucky to never have struggled with weight throughout my earlier years.  But in a span of a couple years, I put on 40 lbs.  I find it is completely ironic that I was prescribed a pill to combat depression that makes you fat....like getting fat and having to buy a completely new wardrobe to accommodate your ever increasing waistline isn't depressing.  This is a huge amount for a small-framed person.  And, the excess weight really took a toll on my back.  My doctor's reaction was that I needed surgery, but because of my previous surgery experience, being overweight, and being a redhead (apparently this makes you a more risky surgery candidate), he wanted me to lose 30 lbs before even entertaining the surgery.  Immediately questions were floating through my head:

  • How am I supposed to lose weight when the docs trying to help me put me on drugs that make me fat?
  • How am I supposed to lose weight when I am in too much pain to work out to lose it?
  • How am I supposed to lose weight when I am already "dieting" and cannot do anything but gain weight?
  • Why am I the only person asking these questions?
My family and friends meant well.  I really believe they felt that with a proper diet and exercise, I would be able to lose the weight. I was getting really frustrated with everyone and was feeling incredibly hopeless.


The Day that Changed Everything

Late last year, I had a group of trainees and we were all conversing over lunch one day.  They were asking me about my back.  Unfortunately, over the past couple years, I have to be rather up front about my back and tell my trainees in case I am grumpy at work.  So, I was sharing the story that I shared with you above.  Most of the time when I tell this story, people have a really hard time believing that it occurred.  I can understand that.  It is certainly a lot...much more than the average person has to deal with at the tender age of 13.  One of them asked me flat out if I had scoliosis.  I kind of looked at him funny and said yeah.  Most of the time when you say "scoliosis," folks give you a blank stare until you remind them of the bend over test from PE in junior high that most people in the US take.  But he knew exactly what scoliosis was as he explained it to me.  I asked him if he had it.  He said no, but his cousin is a chiropractor that specializes in a scoliosis treatment.  I am immediately interested....however skeptical.  I have 8 vertebrae fused together and hadn't explored chiropractic treatments because how could that be effective for a back that is fused together?  He began to tell me about this new, alternative, comprehensive, and non-invasive treatment for scoliosis. I am amazed, and hopeful that the docs would even entertain talking to me.  But the trainee said his cousin works in Japan and Singapore.  Just as my mind starts racing around trying to figure out how long I would have to take off to get seen in Japan, and maybe tour around a bit while I am there, he lets me know his cousin has colleagues in Northern California that he collaborates with.  I am stoked.  I immediately start researching this CLEAR Scoliosis treatment method to see if it is legit and if I would even be a candidate.

I find out the colleagues are in San Jose.  Not completely convenient, but doable.  I immediately type up my back story and email it to them to see if they would entertain the idea of taking me on as a patient.  I got a call back a week or so later from Dr. Mike Janzen.  The best part of the conversation is that he was completely sympathizing with my questions about how it was expected that I would lose weight if I am taking meds that make me fat.  Plus he mentioned he was concerned that if I were to do surgery that my back is so hypersensitive to pain, that the surgery wouldn't be effective.  He asked me to go get an MRI to see the damage.  With some excellent networking help from my hubby, I got my MRI and shortly after travelled to San Jose for a meeting with Dr. Mike.  I saw the images of my contorted spine and misshapen vertebrae and listened to his explanation of the non-invasive program that he uses.  He also explained that fighting pain for so long, the car accident that really woke the pain beast, and years of wear and tear in my body will need a "reset" before we start treating my back.  This brings me to today.


The long and winding road ahead

I am working with a biochemist that works along side Dr. Mike that specializes in endocrinology, neuropathy, and how pain is linked to other parts of the body.  He suffers from celiac disease himself, and has done extensive research in autoimmune disorders and their everlasting effects in the body.  I am in the midst of the reset process now.  Part of the reason I was unable to lose weight was partly the meds, but also partly because my body is holding onto fat for energy because it is in a constant "fight back" state.  I am so glad I decided to go this comprehensive route of treatment instead of opting for surgery right off the bat or taking a new medication.  I love the idea of treating from the inside out.  Mind you, it is a bit overwhelming, but I am glad that I am getting to the roots of the issues rather than treating the acute symptoms.  And, at the very least, if this treatment doesn't end up working for my back, I can learn my triggers for pain by understanding whats going on inside.

I am now treating one of my underlying issues called Leaky Gut Syndrome.  I know it has a terrible name....and it is kinda funny.  In fact,  I never heard of it before going through this process.  Leaky gut is referring to the permeable intestinal lining that has been damaged due to a number of possible contributors including:

  • autoimmune disorders
  • gluten intolerance
  • chronic pain
  • Stress and anxiety 
It turns out that I probably have an autoimmune disorder, and have had it all my life,  just not sure which one yet.  We are in the midst of treating the leaky gut...trying to get my intestinal lining to heal.  So while it heals, I need to ensure I eat foods that do not irritate the bowel.  That means no alcohol, no caffeine, no dairy, no grains, no processed food....pretty much just some veggies, some fruits, and some meat.  That is it.  I am reading more and more about it and understanding more and more about my intestinal lining than I ever cared to know.

Its been 5 1/2 weeks now on this diet and I have had only two major emotional meltdowns.  Its difficult to take food away from someone that really loves and appreciates food.  Folks around me certainly feel sorry for me but don't quite understand why I am so affected from this food loss.  I have been thinking a lot about it lately as to why I am so sad and affected from this loss.  Food is very emotionally connected for me.  I have a fantastic food memory.  I can think of dishes that I have eaten in the past and exactly how they tasted and how they made me feel.  I sometimes get a hair up my sleeve to try to recreate some sauce I have been intrigued by or some dessert that was amazing.  I am 100% in love with food, sharing food, making food for others, and trying new things.  When 2/3 of your food repertoire is removed from your reach, it can be devastating.  Everything I know about cooking has been challenged:  I cannot use the same products I have always used, I need to alter cooking methods that I know work, and I can only use a handful of ingredients to create.  It is very frustrating.  The only way I can explain it is this:  Think of the one thing that makes your world tick, then you find out that that thing is hurting you, and you voluntarily take away a huge chunk of it in the hopes that it makes you better....but it is all around you and others don't understand why or what you are doing.  It is very frustrating.

However, in the last couple weeks, coworkers and family have been so supportive of this process...asking me to blog about my experience, record down my successful recipe alterations not only for other folks to try but other patients that are going through this process, and encouraging me to keep trying new recipes to keep food interesting.  I will start posting some of them so that you can enjoy some of the tasty new discoveries.

Thanks for reading this long-winded story.  I hope this explains my sad mood these past 5 1/2 weeks. I am preparing myself for the next step which is learning which gluten sources I will not be able to reintroduce to my diet because I am sensitive to them.  Once that occurs, I am going to start learning how to make my favorite baked goods, using alternate ingredients.  I am not going to let this process get me down.  I will persevere.