Tuesday, June 12, 2012

I've figured out...

... what's been eating away at me through these last few days of physical therapy: the fear that I will never again be able to relax in my own body.

The adjustments that Beatriz asks me to make while she is watching me are often so infintisimal as to be virtually imperceptible to the untrained eye. Certainly, they are not movements or adjustments that you learn how to make in the course of every day life and, therefore, come naturally (you know, pull L3 and L4 forward and rotate inward - see previous post.)

Further, the adjustments are for EVERYTHING and they're for virtually EVERYWHERE. (I'm reminded of the song Daisy sings at school "Clean up! Clean up! Everybody clean up! Everything! Everywhere!")

All of this is one thing when I have the trained eye of Beatriz on me but quite something else when I'm on my own trying to figure out if I am making all the appropriate adjustments with every movement.

Tonight I went for a walk down University Avenue in downtown Palo Alto, the main drag for restaurants and stores. My goal was to eat at a middle eastern restaurant and then cruise the stores for some retail therapy. Of course, I was practicing my new postures for walking, standing, and sitting.


Both mentally and physically. I gained new pains/issues: my toes started cramping at one point, my left knee felt stiff and sore (new - usual pains were/are in my right - that's catching too, don't worry), and my left buttock started complaining. I have been told to adjust my pelvis, laterally left slightly, dropping my hip on the right side, relax my knees, align my feet forward, ground my big toe, stretch out all my other toes, and lean back a good 10-20 degrees from L3 and L4 only, basically trying to mimic the post below (except without my shoulders being back - I need to relax/round my upper back to avoid popping my ribs but, at the same time, push my right shoulder back.) Confused yet?

It's not comfortable, it doesn't feel natural, and I get tired very quickly. Further, I feel like, in trying to maintain, I'm frequently over-correcting and causing other issues.

Ditto issues with sitting except a lot of that is the result of the fact that I don't have a 19 degree foam pillow that I'm supposed to cart around with me to put on every seat I put my derriere on (no, I'm not kidding.)

Let's not even mention the mental space this occupies. 

I was doing all of this on my own, without chatting to a friend or dealing with a 3 year old. I can't imagine trying to carry on a conversation, let alone herding a toddler at the same time as constantly mentally scanning my body.

And this is only the beginning. 

It seems like every time I even breathe in Beatriz's presence, it prompts a new adjustment. The left side of my face is tight, apparently I'm grimacing on one side only and my eye won't open enough on the left (I sound like a stroke victim). When I think, I smile a little on that side and look up. I can't do either of those any more (even though they are somewhat unconscious... or at least they were: not any more.) So, there are the myofascial releases for my eyes, my forehead, and the left side of my face.

When gripping a bar during an exercise, Beatriz noticed that my left thumb's dorsal flexor is weak and so now there are the exercises for the left thumb with a pencil. To add to the myofascial release for my hands (because they're tight too) and the stretches for my other fingers (because they don't have the right range of motion.)

Take that level of small adjustment for every single limb and digit in my body and then you may be able to imagine how it has been for the past 3 days.

And let's not even MENTION the soul-destroying task of doing all exercises in a bra and tight shorts, while being videotaped and photographed, while Beatriz points out the folds of my skin, my slack muscle tone, and how I probably need to continue to lose weight.

Oh and let's not forget that my A-type personality is not appreciated in this new world. I move too fast. I talk too fast. I don't use the right "soothing, positive' words.

Hell, I am so tired of trying to remember how to behave on the cellular level that it's just one thing too many to have to make a personality 180 at the same time.

Maybe some folks can do it. Maybe I'll get there in the end. I don't know. I'm just sick of the hypervigilance and being picked apart.

What I wanted more than anything else when I walked out of that woman's house today, was to lay down on a bed and just sleep for the rest of my life. Of course, even that has to be carefully choreographed these days: pillows at certain angles, towel under left lumber at L3-4, towel under right thoracic and T5-6, right arm up but shoulder down, left knee straight at 10 degree angle away from body, right knee bent. 

Oh and don't WHATEVER YOU DO suddenly decide to get out of bed. No, no, no. Take your time. Go slowly. Move with conscious effort, one vertabrae at a time....

I'm done, I can't even continue. Just writing it makes me mad/frustrated/hopeless...

It may be what I need to do but I have no idea how I'm ever going to do it all.

Monday, June 11, 2012

The endless quest for the "end of the rainbow" part... oh whatever

(Yeah, it's yet another one of those posts. You know, about my pain, the non-refundable lemon that is my body.)

For those of you who are Facebook friends (which is probably all of you who are reading this) you'll probably have gathered by now that, although it's Monday, I am not slaving away at my day job in Sacraghetto but, in fact, in Palo Alto.

Why am I here? Oy... honestly, if it wasn't for the fact that so many of you have asked, I'd not be posting this because really I don't know where to start.

Hopefully by now you're up-to-date with where we left off on my journey to rid myself from life-altering pain, discomfort, and a succession of seemingly unrelated injuries. If not, I recommend you do some historical reading on this blog for posts tagged with "pain", otherwise this post might be out-of-context for you.

Where I left off was with a sense of hopefulness after forking out $5k to a local chiropractor who was deploying a broad variety of therapies on me to try and fix my multitude of pain and functional issues - including some brain-based therapies to target what had become the black hole of my mind: forgetfulness, mental fog, depression, poor balance, and poor reactions. I had experienced some relief and things looked to be going in the right direction.

Yeah, well, my body decided it didn't like that direction after all and did a firm 180, right back to square one. Memorial Day weekend, I spent most of my time laying flat on my back, unable to so much as even sit up straight because of the pain, tightness and pressure in my neck, shoulders and upper back. It literally felt as though my body didn't want to hold my neck up any more.

And, although I know we all have bad days, the reality is that, when I go through these episodes they last weeks or months, not days, with no real relief inbetween. Knowing that, I'm not ashamed to say that my mental/emotional health sort of collapsed on me again that weekend. I was angry/sad/heartbroken/frustrated. I just didn't want to go through the process of recovering again, I just wanted to opt out. I was (am) so mentally, emotionally, and physically tired of it all.  Not just the pain but the chiropractor visits but the new diet; the constant vigilance over every movement my body makes; the inability to get my body strong without hurting myself; watching the clock until I could lay down at bedtime; realizing I was being a emotionally unavailable wife, mother, and daughter and not having the energy left to do anything about it. (And that's only the tip of the iceberg.) I was so tired of freaking FAILING at this. Failing at being a mother. Failing at being a wife. Failing at existing.  (And I don't want any shit about how it's not "failing" This is my emotion. It doesn't have to be right or rational.)  I wished there was a plane I could get on to escape my own life, my own body.

After a few days of feeling thoroughly sorry for myself (obviously), I took a deep breath and did what every good, internet-obsessed, 21st century woman does: I started Googling.

A week or so before, I had taken my x-rays from my chiropractor to my new/old primary care physician. Remember, I quit the last PCP after he told me to take some NSAIDs for my "little pains here and there"? Anyway, I went back to my old doc whose bedside manner I loved but who is in a terrible medical group. She looked at my x-rays and confirmed I have Scoliosis. Finally an official confirmation of what I suspected. But when I asked her what to do about it, she basically said I was born this way and there was not much I could do. All of which is bullshit of course because, if I was born this way then one would have imagined that I would have been in this much pain all my life - which I haven't - and then there is the inconvenient fact that my pelvis (which is now rotated and off-kilter) actually x-rayed as level back in 2008 before my hip surgery. Anyway, the point of this is that I finally Googled "scoliosis treatment".

Which led me here - http://www.schrothmethod.com/ - and to learning about the Schroth method of physical therapy, which is designed specifically to treat scoliosis sufferers.

Not wanting to purchase a voluminous book without really understanding what that was all about, I emailed the publisher to see if he/she knew of anyone in Sacraghetto that was qualified in this type of PT. Of course, since there are only a handful of Schroth qualified physical therapists in the U.S. (incidentally a heck of a lot more in Europe) and there was not one in Sac (grrr on the whole b-market frustrations again). However, the publisher said that he, personally, had scoliosis and had been treated by a lady in Palo Alto who "cured" him with one set of sessions.

Dubious about the whole "cure thing" (I mean, hell, your spine is curved, that sounds like a tall order for anyone) I emailed Beatriz Torres (http://www.scoliosispt.net/) of Palo Alto and she responded within minutes. $2k, 4 days, 20 hours, to teach me how to manage my scoliosis and reduce my pain. It's an indication of how desperate I was that I agreed on-the-spot, took the last 4 days on her calendar, and arranged time off work to be there - no questions asked.

Hence, why I am here in Palo Alto.

I just finished day 2 of treatment and I don't know how to summarize, to be honest. It is just... so much. It's overwhelming how much is out-of-whack in my body. From LITERALLY the tips of my fingers to the tips of my toes and everything inbetween. And I mean everything. I am even learning to massage the fascia of my face because, apparently the left side of my face is tight and grimacing while my lower jaw is moving to the left.

I'm re-learning to sit, to stand, to walk, to write, to drive, to sleep, to breath... to just... be. It's exhausting. Not because it's physically hard work, not like a heavy workout or something (which would be welcome), but it's mentally frustrating and exhausting to retrain your body to do basic things. And then to realize that this is not just something you do for a few hours a day, this is now your life.

To give you some indication of how alien and hard some of the things are that I'm being asked to do, I give you this example:

Try to move the left side only of your lumbar region - L1 through L3 - forward. Without moving anything else - your shoulders, your hips, your head... NOTHING. Feel like a string is pulling the left side of your vertabrae toward the front of your body and rotating it a little inward. Now, if by some magic hand you've figured that part out, it's time to isolate your T6 and T7 vertabrae on the right side only and pull those forward and rotate slightly inward. But don't let your right shoulder roll forward, in fact, pull that back at the same time. Oh, and don't forget your pelvis, move it to the left a few degrees. Now lean back at L4, just L4 mind you, to create a curve in your spine. Wait! Wait! Don't let your sternum pop up. Relax that part but without anything else changing.

Yeah, right. Good luck with that.

I'm sure it all works but I just don't seem to be able to open up the brain or emotional space to embrace it all right now.

Plus, there's the fact that these treatments always come with these therapists who promote things like relaxation, meditation, slowing down, and all other kinds of woohoo-mojo. Why, in the name of God, can I not find an a-type personality who does this stuff? Being lectured about slowing down or meditating, only makes my heart accelerate and my stress increase. I. DON'T. WANT. TO. STAY. HOME. AND. EFFING. MEDITATE!!!!! Ok? I am already bored stiff with the ordinariness of my life. I am just craving something more. So, no, I don't want to take 15 minute naps throughout the day. I want to fix this body so I can live life. Not in a plastic bubble of "untroubled and peaceful serenity". I am not the Dalai Lama!!!! Bottom line: I already feel like I am "losing me" in all of this. And I liked me, I really did. What I need is to figure out how to be me with this body. What I don't need is the kind of advice that says "Don't take your daughter to the grocery store any more because of the stress on your back." Yeah, that's right, this is the level of guidance I'm being given: to get up at 6am so I can find the time to go grocery shopping alone. I. DON'T. WANT. TO. GO. GROCERY. SHOPPING. ALONE.

And let's not forget that I'm supposed to forego all other kinds of exercise: my beloved weight-training, pilates, yoga, biking... how the hell am I supposed to be fit?


Since I am learning to walk like a catwalk model (don't worry if the next time you see me, I appear to be auditioning for America's Next Top Model), my homework for tonight is to go to Victoria's Secret and observe the posture of the mannequins.

So, I'd better get on that.  Until tomorrow...

Wednesday, April 18, 2012

A bowlful of salt does NOT help the medicine go down

Having completed Cleanse #1 for the intestines a couple of weeks ago, I managed to negotiate a vacation at Disneyland (more on that later) and beach time in Newport without too much deviation from the no-gluten, no-soy diet. Big woops for me.

So what was my treat?

Cleanse #2 for the liver.

Wheeee! These chiropractors really know how to party.

The liver cleanse has a few less dietary limitations, for instance I can eat beans and nuts (although not peanuts) but the main difference is the supplement, Clearvite. With the intestinal cleanse, I had to drink one yucky supplement in the morning and evening, "Repairvite", but with the Clearvite I have to drink it once a day to start, then twice a day, and then up-to three times a day, building up over time. It tastes a lot like a body-building protein powder, if you've ever had anything like that which, once upon-a-time, in a different life, I had my fair share of.

So, all in all, I thought I was heading into pretty much the same thing for round #2.

That was until it got to Day 2 on Tuesday at about 11am, when I started to get this weird, dry sensation in my mouth, coupled with the sense that I had just downed a bowlful of salt. No matter how much I drank, the sensation got worse.

Then, POW, like a sideswipe out of nowhere, I felt like I had got run over by a truck. Exhaustion overtook me, my head started to swim as if doped-up on cold medication, my glands started swelling, and my ears and throat started getting sore. I seriously felt like I was on the front-end of a major head cold but without the mucus.

After consulting with the doc today he confirms that, yes, this is typical for folks at the beginning of the liver cleanse.

All of this was faaabulous timing, since I have had 7 hours of meetings in the last two days, meetings where I had to get into the office and talk-talk-talk. By the time 2pm rolled around today, I was spent and had to take a couple of hours off. I literally felt like I could not hold my head up on my shoulders and every time I tried to sit at the computer, I felt so heavy I thought I would fall off my seat like a sack of potatoes.

Right now I don't feel an awful lot better. I'm propped up in bed with my laptop, trying to catch up on emails, having absolved myself of mothering responsibilities for the evening.

The doc suggested that the cleanse is making me pay for the sins of my youth. Yikes, this could take a while.

Tuesday, March 27, 2012

... of a 21 day intestinal cleanse.


  • I remembered that I really do like most healthy foods.
  • I experimented with cooking new foods and gained some culinary skillz, searing tuna for the first time, making my own marinades, chopping ginger, and integrating coconut and coconut oil for some yummy results. (Thanks to my friend, Mala, for the green beans recipe. Yummy!)
  • I discovered Kombucha, specifically this stuff, which is like health-food crack. (And about as expensive at $3 a bottle.)
  • I've enjoyed sitting at the new dining table a few nights with Daisy, eating a proper meal. 
  • I found ways to "come down" from my day without wine. I enjoy a cup of ginger tea before bedtime. It makes me feel all warm and happy inside.
  • My mind seemed to de-fog a little.
  • My energy returned. I've been getting up at 5am to go to the gym for the first time in almost 5 years... and not feeling like I'm about to die in the process.
  • I lost 8lbs.

  • I have NEVER, repeat NEVER, created nor done so many dishes. Kudos and thanks to my husband who helped out with that. 
  • I am seriously tired of chopping, grinding, grating, mixing, and cooking every blessed meal from scratch. I actually don't mind cooking and I enjoy fresh food but cooking like this all the time, every meal, just for me, is just exhausting, especially given my lifestyle and schedule. To eat like this full time I'd need a personal chef.
  • Turkey burgers for breakfast for 21 days is not to be recommended.
  • My sweet tooth (such that it is) could only be satiated by bulk, dried apricots from Whole Foods, costing me $20-$30 a week.
  • There hasn't been a morning where I haven't wished I could sit on the couch, watch GMA, and hold a cup of fresh-brewed coffee in my hands. It's the one thing I've missed like CRAZY. I haven't really felt like my day has started for 3 weeks.
  • Not being able to eat out ANYWHERE absolutely 999% SUCKED. Back to my point about dishes and prep time but, mostly, it's about the social element. For instance, every Friday, my husband, daughter, my parents and I would normally all go out for a family dinner together and on Saturdays I would take my daughter our for second-breakfast. Going to social functions - a fashion show at a friend's house, the movies with my daughter, and a 3 year-old's birthday party - was just torture. I couldn't eat or drink anything available except for water. 
  • That supplement drink I had to taste 2x a day did not taste any better on day 21 than it did on day 1. It's nasty and I'm happy to being saying goodbye to it.

My 21 days ended today. I did not cheat ONCE. I am proud of myself but I am ready for the limitations to be over. For sure, the one thing that kept me going was knowing that it would be over.

Unfortunately, my chiropractor (who is also somewhat of a nutritional coach) expects me to integrate food groups one at a time to track my reaction to them, and to eliminate at least gluten and soy from my diet altogether.  So, it's a bit of a false light-at-the-end-of-the-tunnel.

Given that I will be in Disneyland most of next week, I think it highly unlikely I will be successful at cutting both from my diet entirely. Plus, I'm still really not sure nor convinced that completely eliminating either is the right thing to do. Certainly, the cleanse had no affect on my pain levels. This final week much of my shoulder and neck pain has returned with a vengeance. 

Once life settles back down again I plan to find a nutritionist. My pilates instructor works with some folks who are heavily into Chinese medicine and who believe in a more balanced approach to nutrition and so I'm interested to get some second or third opinions, or at least some other strategies to try. Cold-turkey elimination seems so...wrong and drastic to me. I'm interested to see if there is another way to address this food "issue".

What I can say for sure is this:
  1. I will be drinking a cup of strong, sweet coffee in the morning.
  2. There will be wine with a friend on Thursday evening.
  3. I will not just start eating like crap. I didn't before and I won't start now. I plan to keep much of the fresh-and-healthy eating alive for home-cooked meals and try harder to choose the best options in restaurants.
When I started the cleanse I thought it would be just 21 days of change. What I'm starting to realize is that it's only the beginning of a whole new and different journey to learn more about my body.

Stay tuned!

Wednesday, March 21, 2012

Oh Poop!

Hello. It's me again. The girl with the laundry list of problems. Nice to see you again. So glad you made your way over here for another episode of: "What the ef is wrong with Ms. Ranty Pants now?"

As you may remember (or, like me, may have tried to block out) I am currently undergoing a holistic-based treatment with a local chiropractor for chronic pain, resulting in a diagnosis of (in lamen's terms) a bent spine, neck, and pelvis plus some issues with the right side of my brain plus some issues absorbing oxygen.

(If this is news to you and you can stand the tedium of catching up, click here for "the diagnosis" and links to the  back story.)

Still with me? Excellent!

I've been on my intestinal cleanse now for two weeks with one week left to go (thank the DEAR LORD) and have lost 8lbs (the silver lining to an otherwise excruciatingly inconvenient, expensive, time-consuming, and limiting diet). I am feeling like I do have more energy, for sure, but am not sure how much of that has to do with the diet and how much of it has to do with the oxygen-therapy, massages, brain-based-therapy and chiropractic adjustments I go through three times a week. Anyway, I got up at 5am the last two days to work out and didn't feel like I was about to die, something that hasn't happened since before I got pregnant with my daughter almost four years ago. Ok, granted, another silver lining, but I'd seriously need 24 carat gold lining studded with diamonds to endure this diet for much longer.

The next step on the diet exploration was the poop test. Basically I pooped in a tub about three weeks ago and sent it to a lab for analysis. The analysis was to identify potential foods or food groups that I am allergic to and that may be causing inflammation throughout my body.

Here are the basic food groups that they tested for:

  1. Gluten
  2. Soy
  3. Dairy - specifically cow's milk and chicken eggs
  4. Nightshade Vegetables
  5. Meat(s)
My results came back yesterday and here is what it says I am having an allergic reaction to (in the order of most reactive to least):
  1. Gluten
  2. Soy
  3. Dairy - specifically cow's milk and chicken eggs
  4. Nightshade Vegetables
  5. Meat(s)
No, I didn't cut-and-paste wrong. It's the same 1-5. 

In short, I am allergic to, well, food.

Here is the rundown of some of the specifics, cut-and-pasted from the results:

Food toward which you displayed most immunologic reactivity: Cashew, Chicken, Pork, Tuna
Food toward which you displayed intermediate reactivity: Rice, Corn, Beef, Oat
Food toward which you displayed least immunologic reactivity: Walnut, Almond, White potato 
Within each class of foods to which you displayed multiple reactions, the hierarchy of those reactions detected were as follows:
Grain toward which you displayed the most immunologic reactivity: Rice
Grain toward which you displayed intermediate immunologic reactivity: Corn
Grain toward which you displayed the least immunologic reactivity: Oat
 Meat toward which you displayed the most immunologic reactivity: Chicken
Meat toward which you were next most immunologically reactive: Pork, Tuna
Meat toward which you displayed intermediate immunologic reactivity: Beef
Nut toward which you displayed the most immunologic reactivity: Cashew
Nut toward which you displayed intermediate immunologic reactivity: Walnut
Nut toward which you displayed the least immunologic reactivity: Almond
Nightshades:You displayed immunologic reactivity to white potato, the member of the nightshade family usually consumed most often and in greatest quantities. While this does not necessarily mean you would react to all other nightshade foods (tomatoes, peppers, eggplant), it is possible. In the realm of elimination diets for immunologic disorders, nightshades are usually eliminated as the entire food class (i.e., all four previously mentioned foods in this class). This is especially important to the clinical setting of arthritis. 
It was recommended in my report that I eliminate all gluten, all grains, all soy, all dairy, all nightshades, plus chicken, pork, and tuna from my diet.

As you can imagine, this was panic-inducing. I started this journey to reduce limitations that had turned my life almost upside-down, not uncover new ones.

The only thing I could feel thankful for was that they didn't test for sensitivity to wine and coffee. 

This was not what I was expecting AT ALL, especially given I do not have any digestive issues. In fact, I'm the one person in our family who almost always skips the vomiting stage of stomach flus. If anything was "in tact", I thought, it was my big ole gut.


I spent all last night ruminating on the results and realizing that there was NO.WAY.IN.HELL I was going to become one of those people who brought zip-lock bags of anti-allergenic foods to restaurants while others ate off the menu. I mean, I realize there are many people who can't live life any other way because they have such severe digestive reactions to these foods. When this food literally makes you throw up or have chronic diarrhea, I see you have little choice. But the reality is that, even if I am allergic to these foods, the most they are doing are exacerbating inflammation caused by my physical issues. I mean, even by the farthest stretches of the imagination, you can't claim that gluten bent my neck and put my pelvis out of whack. So, my desire to turn my and my family's entire life (and I mean my life, not just my diet - if it was just about food, we'd have a non-issue here) upside down to eliminate all traces of these foods is basically... ZERO.

All day today I was itching to get to my Chiropractor to get his interpretation of the results, fully expecting him to say something along the lines of: "Oh, this is fairly normal for someone in your situation" or "This can't possibly be right. You need to get re-tested."

Instead he said: "You are only the second person I have ever seen with this level of food sensitivity."




To cut a long story short, he was just as surprised as I and, thankfully, immediately understood some of my utter fear that this was going to turn my life upside down. Maybe he realized that it was one straw too many for me, I don't know, but he walked me through some thoughts. Here they are:

First. What the hell? How can I be allergic to EVERYTHING? His thought process, although I have no "test" to back this up, is that I either (a) am genetically pre-disposed to gluten and soy allergies (the most common allergens) and that my genome was activated at some point in the recent past and/or (b) my immune system, through all the issues I have been experienced, got so compromised and so inflamed, and I got so run down that my body began reacting to anything remotely irritating that I ingested- hence the broad spread of my results.

Second. Do I have to eat like a bunny? Ideally, probably yes. But we live in the real world not the ideal one. He suggested that I cut out gluten, at least for a year (at which point I could try and incorporate it back in and may be ok - if it's a genetic issue, however, it's a life-long thing.) He also recommended I cut out soy completely, since it's the second most common allergen and usually accompanies a gluten sensitivity. I scored lower on my sensitivity to cow's milk so he suggested I cut that out but could probably get away with products that are based on cow's milk - cheese and yogurt for instance - so I don't have to go "dairy free".  As for the other stuff, take it on advisement.

All of which is still a lot to take in and will require some adjustments but, at least, it's not going to turn me into a crazy person. (I don't think.) I guess one of the advantages of being on a cleanse which includes almost none of these food groups already (except the meats and fishes) is that being able to add ANYTHING back in sounds like a bonus. 

All I can say is that I'm going to try really hard to be gluten and soy and cow's milk free but I'm not going to be anal about it. If I'm out with friends, I'll look for the best option on the menu, will ask if something's gluten free, and make the best choice I possibly can. But I just can't tolerate being the person who takes 10 minutes to order because I need to understand every ingredient in each dish and then end up requesting that the kitchen remove this or replace that. I can't do it. I won't do it. It's not in my nature. Spare me the lectures. I'm going to do my best and that, at least right now, is the best I can do.

If I get through the end of my physical treatments in 6 months, a year, and realize that I am still in a place that I am not happy with, maybe I will consider further changes to my diet but, right now, I feel like I haven't even begun to give the treatments a chance and here I am faced with life-altering changes. It's too much too soon. Plus, who knows, if we fix the physical stuff and reduce my overall inflammation, maybe those foods won't be so much of a factor in my life anyway? I don't know but I'd like to go through a process of elimination a bit before making even more major changes.

The one thing I will say is that, in some ways, a lot of this is vindicating. I've been trying to tell people for some time that my body is all screwed-up, that I had a sense of degeneration, deterioration, spiralling downward, and all of this supports that I was not being a whiny-cry-baby. I do have serious physical issues, some cognitive issues, and now I find I also have some pretty widespread allergic reactions going on. Which pretty much covers everything. And yes, it's good to know that when I "hit rock bottom" it was for a really good reason.

In other news... my knee pain continues. We've narrowed it down to mainly the MCL and the chiropractor is on the verge of recommending an MRI at this point, in case I've torn it or the meniscus. The one thing holding us back is that I have good range of motion, stability, and no swelling, which suggests it's a lesser issue. Oh, that and I don't want to be told I need another surgery. But man is that puppy sore. Last night I couldn't even lay on my side with my knees together. Ouch!

One week to a glass of wine and a cup of coffee with almond milk or some such crap. Just one week...

Monday, March 12, 2012

Balsamic Vinegar

I feel like I'm swimming in it these days. It's pretty much the only thing with any "twang" that I can eat or drink on this cleanse and so I'm downing it like a college student with a beer bong.

It's in my salad dressings. It's in my marinades. I use it to dip stuff in. I seriously suspect that I have begun to sweat it. That and garlic and lemons. Those come a close second.

In truth, the food part of the cleanse is not that hard. Yeah, it takes a ton of time to prep everything but since I have my primary ingredients for every meal in a baggie at this point - garlic, lemons, onions, spinach - it's getting easier. And it's not like I ate all that bad to begin with.

What I'm missing like CRAAAAAAAAZY is..... coffee.

(Ha! You thought I was going to say wine, didn't you!?)

I don't even drink that much of it: one cup, maaaaybe two each morning, and perhaps a trip to Starbucks with the huzband in the early evening once a week. Yet I just feel like my day can't start without it. I wake up in the morning and seriously am unsure of what to do with myself. I just want to hold a warm cup of rich, french roast in my hands. I want to wake my mouth up with the dark, creamy taste of it. Plus, smelling it brewing for my husband every morning is just torture.

And before you say it: no, it's NOT the caffeine. I have not had any withdrawal symptoms and I would quite happily drink decaf. It's 100% about the taste. I LOVE it. I MISS it. It will be my first indulgence after this thing ends.

Other things I miss? Again, not the food itself but the function of food in my life. On Fridays we usually go out for dinner as a family and now our Friday choices are basically limited to Jack's Urban Eats, which is a "build your own salad" restaurant. Then on Saturdays, Daisy and I usually go out for some kind of treat together, either breakfast, lunch, or a cupcake. Last Saturday I took her to Whole Foods and salivated while she devoured a carrot cup cake and I sipped on bottled water. (TORTURE.)

On the positive side, I have been experimenting more with food than I have ever done. I seared my first ahi tuna steak last week (delicious), made my own marinade for salmon (yummy), and tonight made some KILLER sweet potato fries with garlic, oregano, rosemary, and olive-oil. Finger-licking good! I think I will definitely continue to incorporate some of these basic principles into my diet beyond the end of the cleanse. Eating like this religiously, for every single meal and snack for the rest of my life? Um... no.

I am still waiting for the results from my food-allergens test, however, so I may find that there are foods I should not incorporate back into my diet. We'll see what that looks like.

As to how I'm feeling, I would definitely say more energetic. I'm not getting the afternoon energy slump I was before. I'm not sure how much of that is related to the diet vs. the fact that the constant adjustments and massages are alleviating my neck and shoulder pain more. I'm sure both were/are contributors to my energy level.

So, yes, there is some improvement on the physical side. It's slow and in fits-and-spurts but I'm starting to have more "good" time than "bad" time with my pain. It hasn't gone away completely but has, for the most part, reduced to a manageable level... background noise if you will, vs. the full-on rock concert it was before. Sitting at a computer for any length of time, however, is my key regressor.

The main functional improvement I have experienced is more comfort in bed at night. Instead of the popping and clicking and general feeling of destablization that had forced me to box myself into a back-laying position with pillows, I now find I can freely change positions in bed. This, in turn, is helping my back because I'm not locked into one position all night.

In addition to appointments with my chiro, I have also begun a plan of clinical Pilates sessions at my local gym. The teacher there, Deborah, had a car accident ten years ago, at about my age, has many of the same issues as me (particularly in her neck) and so she is tuned-into what I'm going through, not only physically but functionally and emotionally. In addition to being a Pilates instructor, she also works at a physical therapist's office, and is a a certified BodyTalk practitioner. (More on that later.)

One of the things Deborah has been working with me on is my posture and basic movement patterns, particularly as it relates to the relationship with my pelvis and knee pain (which continues). To put it simply, my various dysfunctions have caused my body to compensate in a number of unhealthy ways and now, to even perform basic activities, I'm using the wrong muscles and/or firing them in the wrong order. So now I'm re-learning to walk, stand still, climb stairs, sit-down, and get-up out of a chair.

Some days I feel like I just need a complete remodel, ya know?

Saturday, March 10, 2012

I want to be Ingrid

Every Wednesday and Friday at the gym, I do my physical therapy warm-ups in a quiet, open area next to the almost-empty group exercise room. I say almost empty because, in that cavernous room, is one elderly lady, gracefully doing plies at the bar.

Ingrid is 70 years old and has been a ballerina all her life. We met in passing two weeks ago and have become informal "gym buddies".

Ingrid is in better shape than me, without a doubt. Her posture is almost perfect, she is lithe and strong, and her movements are graceful and purposeful. She can lift her 70 year old foot above her waist with a control and poise I'm quite certain I have never mustered in all my 37 years. She can sweep her arms around her body so beautifully so that, if you squinted a little, you would believe our ages to be reversed.

But this is not why I want to be Ingrid - although I do wish that I had pursued a vocation that kept me in better shape.

What gets me is when Ingrid talks about ballet.

When Ingrid talks about ballet, her face lights up, her eyes twinkle, and her body vibrates with passion. She was a company dancer for the New York City Opera House, has tutored many a young girl to some of the country's top dance schools, and devoted much of her early years to teaching ballet as therapy to children with polio, in some cases helping children walk unaided for the first time.

Although she retired from teaching ballet several years ago, she recently returned to work after a school in Sacramento practically begged her to. She talks about her students with love, affection, and pride and, is again, watching with eager anticipation as one of them applies to the New York City Ballet.

And as my ears listened to her stories, my heart beat a little faster, feeling her enthusiasm through osmosis and wishing that I had spent my life doing something I felt so passionate about that, at age 70, I would still look and sound like that when talking about it.

In 30 years, I want to be Ingrid.

Separately, and on a seemingly unrelated note, I watched the Kony 2012 video this week and was blown away. (If you have not watched it yet, first of all, where have you been? Secondly, you should do so right now. Click my link.)

Of course I was moved by the plight of those kidnapped children and, yes, I put my money where my mouth was and signed-up to support the movement. But, yet again, what "got" me more than anything else was the film-maker. He saw something so unimaginably wrong, a situation so large and overwhelming that it was absorbing thousands of children a year, thousands of miles away and he dared to think that he could make a difference. He didn't quietly lament the state of the world or give $20 to some Christian aid charity, he put his money and his time where his mouth and heart were and achieved something truly worthwhile.

At this point in my life, at this crossroads, I am struggling with what my life means and what's the point. What is the difference I have made? What is the reason for my existence if not to be Ingrid and living it in pursuit of something that I really give a shit about? The things I thought would matter no longer seem to or, at least, seem to matter a lot less than I imagined they would and, in many ways, it feels as though I've been heading in the wrong direction for 20 years.

I have no answers right now, only questions.

Monday, February 27, 2012

Cautiously optimistic

Just over two weeks into the chiropractor treatment plan and I'm starting to feel some changes. I am hesitant, given my 7-year history of failed "solutions", to say that I am "getting better" but I would be amiss not to recognize some improvement.

First, I have started to experience some relief in my shoulders and neck. Given that they have basically been held together by piano wires since September of last year, this is a HUGE relief. I hadn't realized how much the tension prevented me from breathing. I notice myself wanting to take deeper breaths now. When the pain returns, which it still does, intermittently, I notice that I lock back up again and often catch myself "holding" my breath. Part of it is due to the fact that the part of my spine that is affected actually goes to the third rib, which makes it uncomfortable to take deep breaths sometimes. Being away from the computer for extended periods of time and being more generally active/mobile, helps tremendously too. I notice my shoulder and neck pain return after extended computer use, no matter how I sit. Being in one position for too long is just not for me. Otherwise, mostly I am just really sore from the constant adjustments and deep-tissue massage.

My knee pain has all-but gone again. Phew. I asked my chiro if he thought my knee issues were structural or if they were a result of tendons and muscles being tight. How he answered was that he thought my knee problems were "functional" not "structural" which, yes, means tendons and ligaments and muscles vs. skeleton. This makes sense because my knee pain comes and goes, which it would not do it was a structural issue. That's at least a relief because I was really starting to fret that I would need knee surgery in year from now.

S.I. joint pain is back, however. It's manageable and not surprising, given that this would be the first time anyone has really even attempted to shift my sacrum and pelvis. I was pretty much told to leave it alone because messing it was making it worse, so I did. Now we're doing the complete opposite of that - cracking it three times a week. Soreness is to be expected. Of course, it didn't help that I decided to get all ambitious and bike an 8 mile round trip from our house to Old Town Folsom on Sunday. I was proud I made it and that a sore S.I. was the extent of my issues. I guess keeping even the light workout I have managed to maintain, actually paid off.

Biking by the river. Awesome.

The next step in treatment is the first stage of my detox. I got an overview of the diet plan this evening. Here it is. Gulp. No coffee. No wine. This could get desperate.

The diet

Despite the limitations, I'm kind of looking forward to cleansing my system. This part of the detox is only 3 weeks (timed to end before my Disneyland vacation in April) and I think I can endure for that long. I'm certainly interested to see how it makes me feel, once I get over the shock of having to exist without caffeine and alcohol. (Hubby is already threatening to put a plane ticket on reserve.) After Disneyland, however, will be the liver detox, which I hear is a real bear. Not looking forward to that one little bit.

In other news, I deposited my, er, specimen in the plastic cup and it is currently in my freezer, awaiting me to find 30 minutes in my day to take it to the UPS store.

Wednesday, February 22, 2012

A brief update

For those of you who have been following along on my pain journey, I wanted to provide a brief update.

So far I've had 4 appointments with the new chiro. Each appointment consists of:
  1. 15 minutes doing mild exercise (arm bike) while inhaling 90% oxygen.
  2. A 10 minute deep tissue massage
  3. A chiropractic adjustment
There have also been some other experimental things, like a little electronic pulse that is applied to your ear, at common accupuncture points, to try and stimulate my brain. Through repeated brain stimulation tests, we've pretty much figured out that the right side of me is **cked - reflexes, response time and other things like my ability to touch two fingers together over my head. Things I can do (easily) with my left side just don't happen right now with my right (which is where all my injuries and the majority of my pain symptoms are), so we're trying to kick-start my brain again into firing on all cylinders.

The oxygen therapy or E.W.O.T. (Exercising with Oxygen Therapy) is interesting. I have an open mind about it and, while exercising, read this brief book about the theory behind it. However, I'm not sensing any changes from it, as yet. Initially I was a setting of "3" for 10 minutes (I can't remember off-hand what the number represents but I'll look it up) and today I moved up to a setting of "4" for 15 minutes. I admit to feeling a little more "awake" with the additional oxygen, kinda like when you suck a really strong mint and it floods your sinuses and air cavities with that cool sensation. But the feeling goes away as soon as the oxygen does.

The regular massage is FABULOUS and provides immediate, although transitory, relief in my upper back, neck and shoulders. Thirty minutes back in the "real world", however, and I feel my shoulders creep up and my pain begin to return. 

The adjustments are... mind-bending. For someone like me, who cracks and pops constantly without assistance, and where those cracks and pops represent injury, weakness, and often pain, it's hard to accept that rapid-fire popping in various parts of my body is positive, productive and healing. I have a very physical reaction to adjustments - I literally produce a full-body jolt right after them. Mainly it's been my spine that's been doing most of the cracking but also my neck, arms, and pelvis. So far, no major issues as a result, except of course for some soreness. 

Also, however, no major improvement. I have experienced periods of reduced pain in my upper back and my neck does feel slightly less stiff/stuck but mostly it's status quo. Since I've avoided massage or therapy on my S.I. for some time, after a previous P.T. told me it was "irritating" it, my S.I., sacrum, and lumbar areas are sore from the massage and adjustments but it's not anything I wouldn't expect. Mostly, I feel exhausted and a little loopy at the end of a session.

Unfortunately, as I said in my previous post, my right knee pain has come back with a vengeance - I'm talking can't walk up the stairs on it, can't stand up from a chair on both feet kind of pain. The good thing about the knee pain is that it's only present with certain activity, as opposed to the back and neck pain which is present all the time. The bad thing about the knee pain is that it is aggravated by and in some cases prevents me from doing the exercises that have proven effective in staving off back pain. 

I have no idea if the knee pain came on because of what we've been doing elsewhere in my body or if it's an unfortunate coincidence but I'm leaning toward it being a result of the other adjustments since I've come to believe just about everything is connected to everything else right now. The chiropractor seems non-committal either way, which makes sense because he's only just beginning to get to know me and my body. He has begun massaging the tendons of that knee, which are RIDICULOUSLY sore, tight and "tweaky". In fact he managed to find some pretty major "knots" that I just would not have thought possible to be hiding in an area that small.

For now I'm just trying to be patient and let things unfold while simultaneously icing my knee and heating my back.

And then there is this...

Yes, that is exactly what you think it is. I poop in it, seal it up, freeze it for at least 24 hours, and then send it by UPS to a lab for analysis. We'll be testing for lots of metabolic and auto-immune-type stuff that could be messing with my body (because, you know, what we've already diagnosed is not enough) one of which will be gluten sensitivity.

So, yeah, there will be poop in my freezer this weekend.

Meanwhile, I am continuing to explore other ways to stay exercising and strong, while the therapy part unfolds - the last thing I need is to go backwards in what little strength and fitness I have been able to maintain through all of this. I'm setting up clinical/reformer Pilates training sessions with the lady at my local gym who is a pilates instructor as well as someone who works with physical therapists. She was in a car accident a decade or so ago and had some major spinal issues with resulting pain which sent her in a downward spiral and threatened to take over her life but, through Pilates, has been able to restore fitness, strength, flexibility, and reduce her pain. Clearly, I'd like to do the same and she seems uniquely-positioned to help.

Which leaves 5 days a week consumed with therapy at this point. While there are still other things that have been recommended that I could explore (Rolfing, Bowen Therapy, and Body Talk to name just a few) there are only so many hours in a day, days in a week, and dollars in my pay check. I'm going at this stuff with all I got right now, so let's hope I start to see some improvement soon.

In other news, work = stress. This is not helping. 

Friday, February 17, 2012

The (latest) diagnosis

It's always too early to quit. -Norman Vincent Peale

I know I have left you all itching for "answers" after my last two posts: Catharsis and The Toll

Ok, I'll admit, my first creative passion was/is writing so part of me did that on purpose. Yet, at the same time, I just couldn't launch into an explanation of my most recent diagnosis without starting from the beginning. To me, it would have been like having you begin reading the book 3/4 of the way through. But, now I've finally got all that stuff out of my system, it's time to share where I'm at in the here and now.


In my latest quest for "answers" I started researching Fibromyalgia. My uncle was getting tested for it (he also happens to share my birthday in some weird coincidence) and it seemed like the last frontier. As you'll recall, I've explored muscular, skeletal, hormonal and neurological and found no real answers for why my body seems to be continually failing me.

So, I went back to my doctor and told him that I thought it was time that we explored the possibility that something more fundamental was at the bottom of the things that have happened to me in the past seven or so years. 

No sooner had the words escaped my lips than he was pulling out a form and writing down requests for arthritis bloodwork. 

"I don't think it's arthritis," I said. (Which was me being polite because what I wanted to say was "If you think this is arthritis, you clearly have not been paying attention for the last 3 years I've been your patient!")  My husband has a form of rheumatoid arthritis, so I know what that pain manifests as, I've watched the progression, I hear his symptoms; they are NOTHING like mine. 

"Well, this is a fairly in-depth bloodwork I'm getting for you, let's see what it pulls up," he said. So I acquiesced, thinking that, at least, if I could rule out his initial hypothesis, I could get him to take the next step in really diagnosing me.

Haha. This is where I realize just what an overly optimistic person I really am.

The bloodwork came back as negative for arthritis. Thank God, yes, but at the same time unsurprising.

"So, what's the next step?" I asked, expecting him to suggest another litany of tests. Lord knows, he's never been reluctant to sign a test slip before that day.

"Well, all the markers show you do not have arthritis but there is one thing that came back positive, sort of in contradiction of all of that. I don't really know what it means but it could mean you have some kind of non-specific arthritis," he said. "That may explain the little pains you've been having here and there."


Are your freaking kidding me!?  Have you not been listening to me for the past 3 years? Have you not personally written three physical therapy referrals slips for different issues, performed x-rays, and had me come in every 2 weeks for the majority of that time for Osteopathic Manipulation? Do you think I am bored and need something to occupy my time!?

Ok, that's what I WANTED to say. What I actually said was: "Well, they're not little pains and they've actually been affecting the quality of my life. In fact, I would like a referral to a therapist to help me deal with some of the issues that have come up for me as a result of my chronic pain."

What I would have hoped would have happened at this juncture, you know, if this was someone who really gave a flying **ck about his patients, would be that the doc would pull himself up short and say something like: "Really? I had no idea it has been this bad for you. If it really is this debilitating, perhaps we should consider looking at some other things."

However, what he actually said was: "If you look on the back of your insurance card, you'll see a 1-800 number you can call."

And with that, he discharged me with prescription NSAIDs, which I told him I did not want to take because I didn't see how they solved anything and because I did not want to live a life of pill-popping.

Yes, this was the moment I mentally "fired" my doctor. (In a weird twist of fate, I received a survey for him just yesterday. I had a lot of fun completing it online.)

Soo.... having given up on the conventional medical community, I set about more Googling. As I've said before, I am well aware that this is a dangerous path because you can pretty much convince yourself you have almost anything/everything if you spend enough time reading symptoms online. Yet, the reality is that the web is pretty much all I have left at this point.

In Googling fibromyalgia, I came across this site: http://rosevillefibromyalgia.com/  and thought, pretty much, what the hell. With nothing to lose but an hour of my time and $50, I decided to make an appointment.

During my initial visit, Dr. Putman did some brain-function tests, analyzed the bloodwork I got from my doc, and did a full spinal and neck x-ray (something which, it hadn't occurred to me until that moment, had never actually been done before.)

A week later, my husband and I were called in jointly for a follow-up appointment.

First, as I have always felt, there is something(s) "at the bottom"  (or more specifically at the top) of my pain. 

The most concerning are some issues with my neck. In looking at the x-ray it was pretty alarming and obviously amiss. He said it was the worst case of neck issues he has ever seen.

To try and shorten the explanation, I'm going to share this image I found online. These ARE NOT my xrays.

One side (to the right) shows a relatively healthy curvature of the neck (the blue line is ideal, the red lines represent "actual" for this patient.) The left, shows how that curve has originally been lost and had started to almost go in the other direction. 

Ok, so look again at that image on the left and keep going... in other words, completely REVERSE a "C" shape. That's me. Curved 140 degrees in the other/wrong direction.

It's so bad that the doc asked me if I had ever had head trauma in the past. Gulp. (If you read up online, this is actually something that is more commonly associated with whiplash.) He was surprised that I was not having chronic headaches too. (Finally, something I don't have. Yet.)

Outside of being dropped on my head (Mum!?), this is the kind of thing that develops over years. 5-10 years to be exact, which is about right along the lines of when I began first experiencing shoulder and back pain.

The effects of this are both obvious and not-so obvious. First, the front part of my body is taking the weight of my head, which it is not designed to do (and we all know I have a big head.) Secondly, I am developing some unnaturally large spaces between my disks. The front part of my spine is compressed or pinched, as it is being curved in the wrong direction, while the back part is showing splaying of the vertebrae.  Third, it's pulling my thoracic spine (and of course everything else) out of alignment. Fourth, I am developing some mild degeneration (arthritis) in the joints. 

It's not completely correctible... it's too far changed for that. I will probably never get back to a natural curve in my neck but our goal is to get it back to, at least, straight. If I don't, by the time I'm in my 50s and 60s, I will likely have problems walking, maintaining balance, and have numbness and pain down my arms. Remember, your neck is the nexus for all those nerve endings that come up from different parts of your body, to your brain. So pretty much anything that affects your neck has the ability, over time, to affect pretty much everything and anything.

Next, I have a rotated pelvis. We kind of already knew this. Old news. Which came first? Who knows? Who cares at this point?

Next, I have a slight "s-curve" to my spine. It's also known as scoliosis but mine is not so bad as to be clinically diagnosed as such. But essentially, this is what scoliosis looks like:

Pretty, right?

Next, I have incredibly low oxygen profusion. What this means is that I have good oxygenation in my red blood cells but the oxygen is not being passed through the walls of my blood vessels to oxygenate my organs and soft tissue. The "normal" range for this measurment is 2.5 - 4.9. I am measuring... wait for it... 0.4. Again, gulp. I think we all realize your body needs oxygen to function. Mine is not getting it.  My brain and my body is basically being starved of the oxygen it needs to function properly - knock-on impacts to my overall system and to my energy levels. Apparently this is very common for someone who has been experiencing chronic pain for some time. Think about, when you're in pain or under stress, how you tend to want to hold your breath. Now think about subconsciously doing that almost every day for years at a time. (If you would like to learn more about the connection between oxygen and pain you can click here.)

All of these things, along with dealing with chronic and increasing pain for 5 years, are affecting my brain. The ongoing stimulous of "pain" is now expected and required by it. In other words, my brain wakes up every morning and searches for pain signals. How this shows up in my life is that, for instance, a hard workout that the average person would wake up and feel sore from the next day, makes me feel like I was just run over by a semi. (Nodding head.) More commonly, these are known as fibromyalgia symptoms. In addition, since my brain is overpowered by pain signals, and is starved of oxygen, it's affecting my memory (which has become increasingly and noticeably worse in the last 3-5 years) and my concentration - my brain tires more quickly/easily.

Still with me? I know, it's a lot to take in.

There could be more. He conceded that I have a chronic inflammatory problem running throughout my body that may or may not be related to all of this stuff but could also be caused and/or exacerbated by metabolic issues - in other words, food allergies, thyroid or something of the like. That is testing we'll have to do later.

Of course, the biggest question I had to ask was: What would the regular medical community do if they saw this x-ray? Would they recommend surgery? Physical therapy? I mean, how have successive doctors, physical therapists, and osteopaths who have physically touched and analyzed my spine, missed that my neck is curved in completely the wrong direction??

The answer is that the medical community does not have a way to deal with this until it starts to cause some of those more severe symptoms I mentioned earlier - loss of balance, function, and/or acute pain. Nice. I have to be all-but an invalid to get help. Not going to work for me.

Which leads me back to my path forward.

I am looking at, at least, 6 months of treatment to begin to try and address these issues. 3 days a week, an hour each of those days. A combination of chiropractic care, massage therapy, physical therapy, oxygen therapy, brain-based therapy, supplements, and some detox. So, with travel, 6 hours out of my work week, somehow. Oh, and let's not forget the thousands of dollars out-of-pocket. All of this is just a start. It may take a year or more to see real progress in my x-rays.

But how do you not do it? How do you ignore a degenerative change in the structure of your body? I think it's been clear to me, and most of you too, that I cannot continue to go on living with the pain I have been experiencing much longer without everything else in my life falling apart. 

By the time of writing this post, I have already had two treatments. 

The first one was pretty intense, with lots of DEEP massage and some alarming adjustments. It seemed to clear up neck and shoulder pain, at least in the short term, right away. However, the day after my first treatment, I tried to stand up from a stool in my kitchen and my right knee gave out a shot of pain that I haven't felt since I initially injured it back in September of last year. Now, unfortunately, I am back to not being able to walk up the stairs or stand up from a chair while bearing any weight on that foot.  (If you want the back story on the knee issue, check out this post here.) After 5 months of following my P.T. to a "t" and getting to a place where my knee almost never bothered me anymore, it's pretty disconcerting to feel I am back to square one here.

I told the chiropractor about the relapse today at my appointment and he said that I might expect to see some other issues periodically dissipate, flare or rise up as they begin to realign my body. Which makes sense but doesn't take away the despondency associated with going backwards in something that you've worked hard to make progress in., especially when that one area prevents you from performing other exercises that help other areas of your body! 

As with almost all my symptoms, it's not like I did anything strenuous to cause the issue to resurge. If I had, at least I could concede that I shouldn't do "that" for a while. But I'm pretty sure that there's no way to avoid sitting down and standing up.

Now you're brought up-to-date. That's the latest diagnosis. I don't want to say it's "the" diagnosis because I have made that mistake about ten times in as many years.

I'll update you as my treatment progresses. 

Wednesday, February 15, 2012

The toll

A mind that it anxious about future events is miserable - Seneca

At the end of my last post I asked the question: "If you had come to truly believe that you would not be physically competent to do all the things that you're currently planning for your later years, your retirement, what would change for you, right now?"

This question hits at the heart of what chronic pain does to you: it takes away hope. It makes your future uncertain, worrying even.  But this doesn't even begin to address the different ways that 7 years of chronic pain have impacted my life.

First, there are the practical things. 

For more than two years, I have been unable to sleep under the covers in our bed. I have to sleep on top of the covers with a loose, warm blanket over me. Why? Well because the pressure/restriction of a sheet and duvet on me make it hard for me to turn over or shift positions in the night. With my pelvic instability problems, I have to move a specific way in bed: every part of my body has to move along the same plane, at the same time. I can't twist or push off with one foot or things crack and pop or sometimes even seem to "dislodge". Laying under a blanket that moves with me makes things better. I've also taken to placing a pillow under my knees, to keep my pelvis slighting tilted and to relax my knees. And no, this is not sexy nor the ideal situation for your husband to reach across the bed to request an impromptu night of intimacy. You know, should either of us have the energy for such things at thee end of the day.

I find it hard to sit at a computer and work for more than a few minutes at a time without experiencing acute shoulder and neck pain. Unfortunately, my job often requires that I do exactly that - for sometimes hours of focus at a time. I have tried multiple positions and ergonomic solutions (including eliminating my office altogether and working from my bed) but with limited success. Trying to sit in an "ergonomically correct" way just tired my muscles in just a minute or two - they're just not ready to be in that position and they don't want to be "convinced". What relieves my shoulders irritates my lumbar spine. 

Walking and performing every day movements requires thought and constant awareness. I almost am never stationary or moving without constantly being aware of my posture and positioning.Folks have tried to tell me that I focus on it too much, that I've created a situation of hyper-awareness, which may be true. But my reality is that to "ignore" these things usually results in injury or at least hours or days of pain.  Just walking up stairs requires bracing my pelvic floor muscles and watching that my knees stay in alignment. With all the physical therapists I have seen over the years and the multiple diagnoses, it's like a have constant, running commentary in my brain. I'll give you a literal example of something that happens almost every day:

I'm standing at the cook top making dinner. I suddenly feel a "twinge" down my leg. Immediately I check in with myself. I realize I have transferred all my weight to one leg (a no-no) so I switch to both feet. Then I realize that my back is too arched, so I correct by tucking in my pelvis. Then I realize that this adjustment has resulted in increased shoulder pain so I lift my chest and pull my shoulders back. Which calls attention to the positioning of my head, so I try to tuck my chin in a little but not too much. All of this happens in a matter of seconds in my brain and body but this mental dialogue between brain and body is almost constant in my day. And then a moment or two later, after my mind has wandered, I realize all those adjustments have come undone and I go back through it all again. Just standing still is tiring both mentally and physically. I feel like I am constantly trying to fight what my body "naturally" wants to do.
Even clothing can be an issue. The latest craze for skinny jeans have left me writhing in agony, trying to get inside them - pushing and pulling with my pelvis is an issue. I can't wear high heels anymore and racer-back sports bras put too much pressure on my lower neck to tolerate.

My ability to do housework has incrementally diminished. Vacuuming is a killer for my pelvis, laundry kills my neck and shoulder and knees, making the bed yanks my back around in every way possible. Forget about trying to get on hands-and-knees to clean the shower so I've learned to live with gross shower mold. All of this is if I can find the energy to tackle any of it. I'm a zombie by 8pm, when my daughter goes to sleep. I usually try to tackle chores on Saturdays, which gives me Sunday to recover from whatever damage I did. My house is a disaster area. While I have never been a perfect housekeeper, I have also never been this slack either. Just looking around me most days only adds to my stress and disappointment. I don't enjoy living in a dirty, untidy house; disorder seriously messes with my mojo.

I have had to give up many activities I love: swimming, hiking, skiing and yoga being the main ones. Physical activity has always been my stress buster, my personal therapy and yoga was the ultimate form of that. I also enjoy the challenge of new things, especially when they take me to new places. I have skydived, parasailed, horse-back galloped, skiied and zip-lined around the world, climbed thousands of steps on historical monuments, hiked through rainforests, swam in beautiful oceans, and whooped with joy on some of the world's scariest roller coasters. Now I just don't know if I could put my body through that without damage. Some things (like skiing) I know I just could not do right now and have come to accept that I may never do again. Other things I'm just afraid to do in case I hurt something "for good" this time. I live in constant fear that I'll put myself in a wheelchair with some kind of mundane activity, let alone something physically taxing. Bottom line: I've lost confidence and trust in my own body to support me.

Yet, at the same time, I am unable to stay at home and just "relax", something which drives my husband crazy. Part of it is that I work from home and have cabin fever in my personal time but a lot of it is that, unless I stay busy both mentally and physically, all I can think about and feel is the pain. I need constant distraction to take my mind off of whatever hurts in any particular day. 

Financially I estimate that I have invested around $10,000 over the years in treatments and diagnoses: doctor co-pays 2-3 times a month, physical therapy co-pays (some of which were out of network and required full payment) sometimes 2-3 times a week, and frequent massages, to name just a few of the out of pocket expenses. 

The attitudes of other people don't always help either. On more than one occasion by more than one person, it has been suggested to me that:
  1. I am suffering from hypochondria
  2. I have a low pain tolerance
  3. I need to just "accept" my situation and the acceptance will allow me to "let go" of the pain
  4. I need to have a more positive attitude
  5. I need to stop talking about it because words make my world and, of course, nobody wants to be around a negative whiner. There are people out there with much worse physical ailments that me.
  6. I need to just "meditate" and take time for myself; I am too stressed out and this is causing the pain
I admit that, at some points during this journey I have indeed wondered if I really was oversensitive to pain and should just chalk all this up to getting older. You know, suck it up and all that. But what I realize now, 7 years in, is that is just bullshit. I don't just have one issue, I have multiple issues. I don't just have pain I have pain that has changed the way I live. And so let me address each of these points one-by-one. 

Allow me to vent here, k?
  1. Hypochondria does not cause pelvises to rotate, ribs to dislodge, labrums to tear, and knees to run "off track".
  2. This may be true but what's the point here? The level of pain I feel is the level of pain I feel. It's not "relative".
  3. Hahahahahahahaha. **ck off. I will NEVER accept that pain is inevitable.
  4. ARE. YOU. KIDDING. ME!? If I did not already have a positive attitude, do you think I would have been able to spend the last 7 years chasing down specialist after specialist, potential treatment after potential treatment? No, I would have crawled into a corner, downed some Vicodin and cried about how horrid my lot was in life. Anyone who tells me that 7 years of never giving up on my body is not a positive response to my situation is an idiot.
  5. Fair enough. Maybe you're tired of hearing about my aches and pains. Maybe you need to be around people whose lives are all rainbows and roses all the time. Good luck with that. You always find out who your real friends are in these situations. I'm ok with that. And yes, there are people with terminal illnesses and chronic pain issues that are absolutely debilitating. All I have to say to those folks is: I am so, so, so sorry for you. Any measure of positivity and hope that you manage to retain makes you a superhero in my book. But here's the thing: their pain, no matter how bad, does not stop me feeling mine. See #2.
  6. Which came first? The chicken or the egg? Am I in pain because I'm stressed or stressed because I'm in pain? Certainly I am in more pain during the week when I am at work, which could be a combo of time at the computer and the stresses of my job. But the reality is I don't have much latitude to change the stress level in my life in that department. What I do know is I WILL feel less stressed if I'm not worrying about my body falling apart all the time. Maybe my life will not be stress free but pain is my #1 cause of stress right now, so I'm starting there.
Despite my answer to #4, the last 7 years have worn me down and it has got harder and harder to hold out hope that I can affect my situation. I defy anyone to spend that amount of time dealing with undiagnosed chronic pain, to go through the emotional roller coaster of successive, incorrect diagnoses, and not come out the other side feeling doubtful that help will ever really arrive. 

One of the hardest parts of this to deal with is the grief: grief of the things I begin to realize I may never do like teach my daughter to ice-skate or ski, climb Machu Pichu, or even just have the simple joy of getting through a really hard workout. Coupled with that is the anger: why have all these doctors and physical therapists failed me? Why have I spent thousands of dollars on health care only to never have found someone who truly listens and wants to find out what's wrong with me? 

Then there is the fear. And this is how I started out this post. Fear of putting a foot wrong and hurting something else all the time. Fear that whatever is wrong with me is only getting worse and, at 37, this doesn't bode well for retirement. 

Here I am working my patootie off in a stressful job that is not stimulating to me (and which probably increases my pain), to continually increase my income and hopefully build a nest egg that will enable me to retire and do all the things I neither have time nor $$ for right now... but what if, by the time I've reached this nebulous financial goal, I'm physically incapable of living out any of those dreams? What was it all for? What was the point?

Chronic, increasing pain, has made me start to re-evaluate my life choices at the most fundamental level.

At some point it leaves you wondering if you shouldn't just throw the towel in and, instead of killing yourself working for tomorrow, take a step back to try and enjoy what you have today. I continually, mentally war with myself on this subject. To give up everything I have worked so hard for now - my house, my career and income (and everything that allows me to do, not least of which is spend $10k trying to fix myself) - seems almost unfathomable, heartbreaking even. Without money I cannot travel the world and just the thought of having that dream yanked away from me makes me want to hyperventilate. I LIVE for the prospect of my next trip, my next adventure, for seeing the world, experiencing new cultures, for the moment of stepping off a plane in a foreign land and soaking up the new smells and sounds. (The only other thing that makes me feel this way is photography. Thank God I have that at least.)

Yet, at the same time, what if I never get to the end of the rainbow? How much will the "prospect" of all those things matter 10, 20 years from now if I don't have the ability to enjoy them anyway? 

Then, as I mentioned in my previous post, there is the memory loss and the lack of bandwidth to be "there" for my husband, my daughter, and my parents. They get the worst of me all the time because they get what's left at the end of the day, the end of the week. These days that's not a lot. I know they love me, understand, and forgive me for it for the most part but I would like to enjoy my time with my family, not just "get through it" in the hours before I can go to bed and finally exhale.  

For the first time in my life, I find myself seeking the ear of a good therapist. I have almost never been as uncertain about the direction of my life as I am right now. It's an unusual and uncomfortable place for me, not being able to sort through, and make sense of, my various thoughts and feelings. I have always felt sure of myself, hopeful, and empowered. Even that has changed for me. I feel a little lost in life right now and perhaps some of this is being "30-something', certainly pain is not the only thing contributing to my unease, but it is most definitely the most defining element of my life right now - like it or not (I'm leaning toward NOT.) 

Maybe all of this sounds a little dramatic to you.  If I was an outsider looking in, I might agree. But it is what it is. Clearly, I'm not all that happy with the status quo either. I never imagined this "place" for myself. I don't want to be here. I'm trying not to be.

And to be clear, if you didn't read my last/first post on this issue, I'd like to reiterate after all of this, that I am NOT seeking sympathy here. I appreciate the support of friends but don't need a shoulder to cry on. I am looking for answers, not condolences.

Which leads me to my next post. My latest diagnosis. 

Stay tuned...

The first step toward success is taken when you refuse to be a captive of the environment in which you first find yourself - Mark Caine

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