I suppose I'm far enough away from this to be able to write about it. And if Don Lauria can face his grief with his shoulders squared, well, I'd be proud to try to emulate his bravery. Don shared this photo with me last week:
Bill's service photo courtesy of Don Lauria
So back to Brandon's post on Fear:
There was no impending danger, no weapon involved, no one threatening me, no cancer nor one single moment in time I can point to...but I had spent the last 10+ years sliding...down.
I'd been fighting depression since I was little and had recognized that other kids weren't sad. I had learned to put on a game face to hide my vulnerability. I had wrestled with myself to just barely crawl out of my teenage years. I had fought and fought and fought to not get pulled under throughout my 20s. I had a pit in the bottom of my stomach that never went away. When was I going to get over the hump? I had persisted, believing that with enough deep introspection and effort, I could change whatever was wrong with me.
Some time in my early 30s the tailspins started becoming more difficult to counter and I was having trouble righting myself. I was faltering...and failing. I worked harder than anyone else around me. I exercised, ate a healthful diet (whole grain everything) and tried multiple antidepressant medications and innumerable supplements. I read voraciously about anxiety, depression, self-defeating behavior and self esteem. There had never been a time that I could remember that I wasn't hiding how I was really feeling. (I had been told repeatedly, with no restraint as to scorn that I had nothing to be depressed about -- I had a job, I wasn't dying, I wasn't hungry...had a roof over my head. Who was I to be complaining about anything? I had so much, and was still ungrateful. Look around -- there was so much real suffering.) I was convinced I was fatally flawed.
I got fired the day before I closed on selling my house hundreds of miles away, where my former life had been. I had nowhere to go. I was living in a state and area where I knew virtually no one; I had moved there to start the job. The rug pulled out from under me, I went into a tailspin the likes of which I had never experienced. I tried to find work, but I knew the few interviewers I had spoken with could see that I was broken. I had no energy. No will. At one point, if I walked to the mailbox, it took me two weeks to recover. Doctors said I was depressed. And why not? I had lost my job, just gotten out of an emotionally abusive long-term relationship...I was advised to lower my stress levels. That's not it, I shook my head, doctors have been telling me that for 20 years.
I found a bright light...volunteering with a children's organization whose mission it was to impart life skills to kids using sport as a platform. If I wasn't coaching and volunteering, I was practicing or playing. I went back to waiting tables as I had in college to barely make ends meet. I was in my late 30s, and had to periodically borrow money from my parents to pay the odd bill, but I was keeping my head above water. Okay, maybe I had finally found the place I was meant to be. I stepped in as an interim executive director of the local chapter, and then proceeded to be pummeled by the most undermining, brutal treatment I never could have imagined. My pay was withheld when I wouldn't back down from implementing policies to protect the program's minor participants and the non-profit organization itself. I was leeringly threatened. I resigned. The light went out.
Playing golf with my best girlfriend one Friday evening, I met my future husband. We tried to wave him through, but he politely asked if he could play with us. We thought he was crazy. When my friend pointed out the NYY on the side of his hat, I was determined to keep my ball on the opposite side of the course. Nothing worse from the perspective of a rabid Sox fan. But he was persistent. I had sworn off men and had simplified my life down to two things: golf and baseball. I thought he might have been in his early 20s, except that he was remarkably emotionally and intellectually mature. More than that, he could hit the ball longer than me (niiiiice!) and understood the place from which I approached the world. Puzzling. Someone to keep at arm's length.
I slid down further, utterly bewildered. I could barely get myself dressed to work at the restaurant. Ironing my shirts was exhausting. Within a few months, I could barely get out of bed to get to the sofa, where I would go back to sleep. I had no money. I started selling off what I could. I lived off of the pantry I had amassed (to the consternation of family members, I've always had this thought in the back of my mind that I should be prepared for the unknown), and it kept me alive with no cash in my pocket. My car was repossessed. Everything was in collection. I became a turtle, turning further and further into myself. I was trapped. And a failure. My friends used to affectionately call me the energizer bunny or ricochet rabbit. My God, what was wrong with me? Why couldn't I just get it together?
I was persuaded to get married again (my husband wouldn't give up on me) and the muppet was born. The first six months of my pregnancy were spent horizontal; I was on an anti-nausea drug normally given to chemotherapy patients. At every check up during my pregnancy I told my doctors that I felt really awful, and that something wasn't right. The canned response was, you're pregnant...what do you expect? I suspected they thought I was a chronic complainer, so I stopped complaining. I spent my days curled up in a ball, so grateful when my husband came home and held me.
During labor, I told the doctors, nurses, midwives...whoever would listen, that the baby wasn't able to get out. They would nod and say that what was going on was perfectly normal. No, I kept thinking, if there's one thing I know, it's my body. I had grown up swinging from trees and monkey bars, doing gymnastics, skiing, swimming, windsurfing, and later lifting, running, blading, doing yoga, etc., and I KNEW every iteration of how my body worked and didn't work. (Plus, I'm kinesthetic, which is really hard to explain.) Suffice it to say that I could feel her turning over, rearranging her limbs and turning her head to make the move, and then she would collide with something, relax and rest again.
The medical staff was perplexed. They just kept telling me to try harder, so I did. They asked me if I had ever been a swimmer. WTF? Yes, 20 years ago, why? Apparently they were concerned about how long I was holding my breath. I finally told them I had only a little bit left in me and if that didn't work, would they finally give me the C-section and put the two of us out of our misery? (Did I happen to mention that they didn't feed me? I hadn't eaten in over 27 hours. Where was this effort supposed to come from?) My best friend was there, thank the great cosmic bus (that's for you, Mel!), and even she started to talk, encouraging me to just keep trying. Okay, so even though I couldn't imagine having anyone else watching, well, you know...the fear came on strong. It was over quickly, but not before something physically snapped. (I've never heard that sound before, having never broken a bone, but it was an awful sound.)
My daughter didn't cry. Pages made, people running into the room, my daughter surrounded...we waited. They were all hovering, poking and prodding, and finally, the supervising doctor came in and announced that not all babies cry, people, she's fine, nothing broken. A moment later, she let out a gentle, perplexed hoot. And then I was looking down, into her eyes, completely overwhelmed. I thought of my birth mom. I thought of her gathering her things in a quiet hospital room, looking around, taking stock, and then walking out the door to go home...alone. I put my nose down and inhaled...my beautiful, little girl. I would try to find her and thank her, if I could.
After my daughter was born, I continued to slide. I could barely move. But now I had unbearable pain, too. Everyone told me to get moving, that it was my responsibility to suck it up and keep going. Women had been having babies for eons. In fact, did some women not give birth in the fields and keep working? Did I think I was special or something? I tried. And tried. Why was everything so up-side-down? I started researching pregnancy-related injuries. I went to doctor after doctor after doctor. Not one could find anything wrong. We moved in with family. My world had shrunk to the space of our bedroom. I was in so much pain that I cried and cried. My husband did an about-face and was distant. I finally dragged out of him that his mother (who once studied to be a doctor) told him that she knew that I was faking everything, that the symptoms of which I complained weren't real and that I just didn't want to go back to work...I was taking advantage of the situation, and worse, him. He believed her. It wasn't the rug that had been pulled out anymore, it was the earth beneath me.
Hope was slipping away and there was nothing I could do to stop it. My world shrunk to just the minute by minute survival of the muppet and me.
When was it going to end? Hadn't I worked hard enough in my life to achieve, be a good person, correct all those numerous character flaws and other things that were wrong with me? Had I not been humble enough? Grateful enough? I was frightened. I was fighting something I knew in my heart was there, but that I just couldn't see.
More doctors. No answers. Moved in with family 45 minutes away. Smaller room, smaller world. I looked fine, so why wasn't I working? Why wasn't I out looking for a job? Why didn't I go to sleep at a decent hour? Just get it together, that's what I had to do. And we were in the way. What was a 40-something wife and mother doing cooped up in her room? I was in pain, and I couldn't sleep.
A few months later, I packed up the car and the muppet and I moved in with family back home in New England. We lived in the basement. There were rules and constant disapproval. Constant opinions about everything I was doing wrong. Hostility and superiority. I obviously didn't appreciate what was being done for me. Ungrateful mess.
We moved again, into a house that would be unoccupied for a few months while a family member was away. The muppet and I had some room to breathe, but it was all I could do to get us out a few times a week to walk to the grocery store. I had been a vegetarian for 22 years before intentionally including meat in my diet again around 2006 when I really started feeling physically terrible, so at this point I turned to a vegetarian diet again, which only made things worse. Mostly, I just felt like I was in the lowest place I could imagine and was barely keeping it together. If things didn't get better, how much longer could I live like this? I looked at the muppet and thought she deserved so much better, but she was stuck with me.
We had to pack up again and move back into the basement. Then back to the vacated house. Then back into the basement again. All this time since moving back to New England I had been voraciously researching health matters, and when I ran into a dead end, I turned to voraciously researching anything I could find on my birth origins. Why didn't I contact my birth mom and ask about health matters? Oh, and that would be a fine way to interrupt her life. IF I contacted her, the idea of which scared the pants off me, it would be to thank her, nothing more. Well, that must have meant that I didn't really want to get better and wanted to be sick, if I really even WAS sick. @#%*&!.
Fear, as I continued to slide, permeated every moment of my life at that point. How was it even possible for things to be getting worse?! What if I never got better and had to live like this for the rest of my life? Who would ever hire me? What if I never got my independence back? These prospects made everything inside me just shake, like my stabilization muscles were attached to an electrical outlet. I desperately needed sleep. My stomach hurt; I wanted to curl up in a ball and disappear. I could barely look anyone in the eye. I felt invisible and alone.
Talking with my dad (a physician) one day, I told him about the muscle spasms in my back that I'd had since my 20s, but that had gotten so bad that they were constricting my rib cage and making it hard to breathe. I had been reading about the importance of sleep, during which HGH is produced and the body repairs itself. I had had insomnia since my 20s, too. I was lucky if I got 3-4 hours of sleep most nights, and others I didn't sleep at all. Here, feel the knots, I said, they're real.
My dad came home a few days later and said that he had spoken with a pain specialist, who was a runner, too, and that the doctor had agreed to see me as a favor to my dad. The idea was to have the pain specialist inject or dry needle one or two of the worst muscle spasms to see if that might work to relieve the pain. You know, maybe I'm not ready to write about all of this (shoveling break!).
I went to see the doctor. At that point, it was embarrassing filling out the necessary medical history forms; I had seen so many doctors. I think I brought a spreadsheet to avoid all of that. First, he just wanted to talk with me. He looked me straight in the eye, even when I started explaining why I was there and listing the things that were wrong. Until then, my experience had been that doctors would look at you when they asked a question or two, then look away. My eyes welled up with tears; he wouldn't look away. He was listening intently. I was embarrassed about my physical condition and explained that I wanted so badly to have my life back. I couldn't run. I couldn't do anything to get rid of the stress in my body. I felt trapped, and so sad...I had this pit in the bottom of my stomach that never went away no matter what I did...and I was so scared. I didn't want a prescription; I wanted help. I wanted to know what was wrong, so I could do whatever I needed to do to get better.
The doctor told me that he could still see my athletic build underneath and that he believed I would be able to run again. We talked about trail running. He squeezed this and that, pressed here and there, said that there was a good chance that I had fractured my tailbone and/or something in my hips during labor, and then said he wasn't going to touch me. I needed to see doctor so-and-so, who was the preeminent fibromyalgia specialist, the guy that writes the books (and whose wife also suffers from FM). I started to cry...I didn't want something that nobody believed was real. He assured me it was real and that he believed that the specialist could help me. He didn't charge me.
It would take over 3 months to get in to see the FM specialist (and that was with the help of my dad having his practice at the same hospital). I couldn't do it, though. The prospect of making it another 3 months of feeling so badly was more than I knew I could withstand.
I've carried a small card covered with clear tape in my pocket since my mid-20s with a quote attributed to Fred Mills that says:
"The wonderful thing about the game of life is
that winning and losing are only temporary...unless you quit."**
I'm not a quitter, I thought. I'm not. My birth mom wasn't a quitter. I'm not a quitter. I'm not giving up, not now. And I went back to marathon research, bouncing between FM and trying to learn about my birth parents.
A couple of months later, I stumbled upon several articles that referenced anecdotally that a gluten-free diet had helped some people with FM. (This was actually preferable to the drugs typically prescribed for FM from my perspective, despite my love of Nutterbutters. I could give up Nutterbutters if it meant that there was a chance I could feel better.) I researched further and gathered a list of recommended supplements (supported by research) for FM, as well as for those on a gluten-free diet. A week later I gave up all grains (July 2011).
My body did not like a gluten-free diet. It wanted what was missing. I felt like walking death for the first couple of weeks. (See, my family argued, proof that it doesn't work and it's not so simple. Stop the nonsense.) I dug in my heels, confident in my research. I was up in the middle of the night eating copious amounts of fruit salad and giant spoonfuls of almond butter. Note that I said up in the middle of the night -- I had started sleeping. (I should also note that I had started using a Philips "blue light" which was timed to turn on 45 mins. before I wanted to wake up.) Three, four, five weeks went by, and I was out walking, a lot, and was taking on huge hills with the stroller. (Purely coincidence or placebo effect, another family member retorted. Obviously, I wanted attention with my special diet.)
I think I've written about the rest elsewhere, but the bottom line is that I was diagnosed with celiac disease through blood work 7 weeks after starting a no-grain diet (after being taken by family to a restaurant that had absolutely nothing gluten-free). I saw the FM specialist at the end of August 2011, shortly after the diagnosis. He diagnosed FM (a syndrome, not an illness) and "prescribed" non-impact, aerobic exercise at least 45 minutes at a time at least 3-4, if not 5-6 days per week, getting a good night's sleep every single night, eating a healthy diet with lots of good fruits and vegetables and simply just making good choices.
I took his prescribed "Golden Rules" and treated them just like a written prescription. I moved back into the house where we could live alone for a few more months later that year. At the end of February 2012, I started to work again. On March 16th, 2012, I learned that my birth mom had passed away, and on March 19th, I learned who my birth dad was.
On Thursday last week, I went for the 1.5 year follow-up with the FM specialist and that's it! No more doctor's visits necessary. No more pain; the pit in the bottom of my stomach I've had my whole life is GONE. No more fear.
I still need to write up a TR about my trip to CA with the muppet for the Oakdale Climber's Festival and more, and I'll try to do that soon. I'm in a much better place now, having taken some time to process.
A special thank you to everyone here from my heart. It wasn't all that long ago that things looked bleak from where I was standing, and now...well, now I'm whole.
P.S. I didn't realize that I had made it so difficult for folks who wanted to read these stories (I'm still shy, what can I say?), so here are a few links:
like my stabilization muscles were attached to an electrical outlet. .
Your writing and imagery always empties me. It is so poignant and dynamic at the same time. I so enjoyed meeting you at FL and I wished we had been able to make it to Oakdale, but we were traveling. My partner, Ferretlegger, is just a couple years behind the Oakdale contemporaries and they, and your Dad had great influence on him.
One of his climbing partners for over 40 years is Guck, (Phillipe) who I know spoke at length with you at FL about adoption.
But I digress from this TR....I have met others who had their life changed by the whole gluten-free diet. Amazing isn't it? I had some serious health issues a couple years ago and was much better about sticking to an (almost) gluten-free regime. It was significant the difference I felt. I've regained my health, but you've inspired me to revisit gluten free and I believe I'll feel even better...
Can't wait to catch up to you again....your depth of spirit is truly forged from rock.
ohhhh my.... a great way to help others is by you sharing this!
it it very sad and hard to tackle life along with this 'haunt'
that was there, as to health... worse yet at someone you
loved would NOT believe you, :(
but you see, god knew, and that nudge kept to you going...
you did not give up!!
wonderful, hearing you are finally feeling like part of life and
the greatoutdoors again!!!
hugs and god bless, keep being a great mommy, too... :)
Because I've had prolonged digestive problems in the past with horrible parasites called amoebas, which I picked up in India and Nepal, I understand very well how one's digestive system can affect one's mental outlook. I always say, that when I'm so depressed I want to kill myself, but I don't have enough energy to open the window and climb up on the sill to jump out, then I know I've got another case of amoebas coming on.
I've had drug resistant amoebas for months on end, but I can't imagine enduring what you went through for years at a time. As a matter of fact, your recounting of all your physical and mental suffering was so vivid, I had to stop and reassure myself that I'm ok. It's your stomach you're describing, not mine!
I do hope to meet you in the future and I'm so glad, you discovered the real problem.
Hey, thanks, everybody, for reading, and for sharing your thoughts. I know this TR is low on climbing content and pictures (and inspiration), so thank you for sticking with it.
It's only been a year and a half since I started on the path of healing, both physically and emotionally, and really only a year since I first started being able to distinguish how the "new" me didn't get fazed by uncertainty or sad or painful occurrences.
A good analogy might be the difference between windsurfing or sailing in high winds with and without a daggerboard or keel. My entire life up until roughly a year ago when my body was, I think, for the first time in my life, at equilibrium, I'd been sailing without a daggerboard. One day I might have been sliding side-ways this direction, the next blown flying right out over my sail, praying I didn't land right in the middle. I've always been characterized as being hyper- or overly sensitive, so without a daggerboard to aid me in staying the course, when sad things happened they were amplified, frequently to the point of being unbearable.
I've had my daggerboard all the way down for the last year, and what an unbelievable difference in my state of mind. Learning in the space of a week last March that my birth mom had passed away, that I had figured out who my birth dad was myself and then that he had committed suicide 22 months (to the night my birth mom went into labor with me) after I was born, was pretty big and so sad. BUT for the first time in my life, as I looked around, I was JUST sad. I could feel sad, but not be sucked into the undertow. I could feel sad, and it didn't slay me. I could feel sad, and for the first time in my life, I felt it in my heart and not in my stomach. I wasn't depressed...I wasn't depressed!!! I could take in what I wanted to when I wished to, process it and then move on (!).
The more time that went by, the things from my past that hurt that I never seemed to be able to let go of just lost their power and intensity. When painful memories popped up, I looked at them without attaching any emotional significance to them and their power over me just withered. This is HUGE. I used to be able to recall (consciously and unconsciously) an appallingly long list of painful memories one right after the other without any idea when the list would be triggered. This doesn't happen anymore.
I never knew any differently, so there really wasn't any basis for comparison. Chronically depressed was what they called it. (If I could jump up and down in this box, that is what I'd be doing right now.) I wasn't depressed -- I can see this now -- the food I was eating was wreaking havoc with my body and my neurotransmitters. It wasn't ME. It wasn't my lack of emotional fortitude. It wasn't my inability to appropriately frame things. It was stupid FOOD! Forty-something years of trying to fix my perceived flaws, and all it was, was grain.
I've been "glutened" a number of times in the last 1.5 years, and I have charted what happens, so like Jan, I know that if I start thinking a certain way, I just remind myself that it's only temporary. For the first several days I'm out of commission and it feels like I have a stomach full of glass shards. (Behold, the pit in the bottom of my stomach!!) It takes me about a week before I can actually eat again and by then my body is starving. All I crave is grain-based foods -- it's bizarre. I crave what destroys me. Then for another week I'm exhausted and for another two weeks I'm an emotional wreck. All together, it takes me about 5 weeks to be back to my new "normal".
What's beautiful, though, is that this is all within my control. I eat very few processed foods and no grains. The reason for avoiding processed foods is that there are grains in virtually EVERYTHING. I almost goofed last week when I made some of my favorite tea. I couldn't remember the last time I had seen it in the store, so I was psyched when I found it. It's made by one of those super radical all-healthy, all organic and good for the earth companies. I had the tea bag open and was about to dunk it, when I remembered that I have to read ALL labels EVERY time. I read the label and was flabbergasted. They had added a malt sweetener (barley), without disclosing on the box that the recipe had changed. What's the big deal? Five weeks of Hell, that's what.
Envelope seals...who would have thought? Can't lick 'em anymore. Lip balm. Toothpaste. No shared pots and pans, or toasters. No shared grills (learned that at Facelift). Cough medicine. Vitamin and mineral supplements. The innocuous "spices" on a label. "No gluten ingredients" is a recipe for disaster. Malt flavoring (usually barley). "Made on shared equipment"? Learned that lesson the hard way. No ketchup. A handful of salad dressings. It's actually just easier to just cook! (Also, most gluten-free baked foods are just as terrible for you due to their high glycemic indices.)
So here's why I'm on a bit of a soapbox. Antidepressants are a multi-billion dollar industry. The only symptoms I had didn't point to celiac disease: depression and a pit in the bottom of my stomach (attributed to depression). How many other people are out there? I was prescribed all kinds of antidepressants starting in my mid-20s. Not one of them helped. You're depressed? Here's a prescription. Standard blood tests always showed I was super healthy. It's not easy to be grain-free; it takes a lot of work and planning. You have to be vigilant.
The reward for me is feeling better than I ever have in my entire life. Had I had the emotional stability I have now, I would have made many different life choices. I don't say that with any regret.
My hope? Someone else reads this TR and it helps, somehow.
P.S. I suppose this is as much a story about me, as it is about Bill, and my birth mom, and anybody else that has wound up in circumstances unimagined.
I am so glad that you found a solution that works for you. My story is similar to yours but I haven't found an answer yet for me that works.
One thing I would suggest if you can afford it is to try acupuncture. I have no idea why it works, but I have seen others with sensitivities get dramatic help with acupuncture. The way it is explained is that your body has energy meridians and these get blocked. Sometimes from emotional stress. The blockage leads to all sorts of weird health issues, such as a sensitivity to gluten. Unblocking them doesn't always totally fix the problem, but it could make it easier for you in that the reaction wont be as bad if you accidentally ingest some.
Just a suggestion. I have seen this work for a number of people.
t's kind of horrifying how depression is misunderstood and attributed to faking, etc.
Yep.. the ol .. just suck it up... mentality. It stems from people having experienced short term situational depression and not understanding long term depression that doesn't respond in the same way. Short term situation depression and long term chronic depression are two different things with similar symptoms, which leads to extreme misunderstandings.
Thanks for sharing your thoughts, and I'm so sorry that you are still searching for answers, something I understand and is close to my heart.
What you have raised about accupuncture is very interesting, and I'll definitely be looking into it some more.
You reminded me that for several months prior to moving back to New England, I had been seeing a practitioner of NAET and was working my way through the treatment protocol. I actually felt relief after the first couple of sessions, which leads me to wonder what would have happened had I finished the protocol. (Here's a link: http://en.wikipedia.org/wiki/Nambudripad's_Allergy_Elimination_Techniques. Note that her work is largely dismissed, but then, again, so is a gluten-free diet.)
I had forgotten that in working through the protocol initially to determine which substances were problematic, the B vitamins had presented the strongest negative reaction. Looking back, that makes a lot of sense because the Bs are critical in the production of many things in the body related to energy, mood, etc.
What I didn't mention above were the neurological symptoms I was also experiencing -- numbness and tingling in the fingers, burning sensations (it hurt to put them in pool water!), pain in numerous parts of my spine and SI joints, etc. Once I was grain-free, my body was able to absorb nutrients much better, and this, plus a daily regimen of D-ribose and glutamine, has eliminated these issues. Swimming several times per week is also essential.
Hi Lila, NAET helped me a lot. I even found that I was sensitive to vitamin C. I would itch like crazy when eating fruit. To the point that I quit eating fruit. Now I can eat it and it is wonderful.
I also use to have to take allergy medicine daily. I almost never take it now.
One weird experience from the acupuncture. The doc asked me if I needed to sleep with the window open. I had since I was a kid. Even in the winter I would crack the window. My house mates would get pissed because an artic blast would come from my room. LOL.. even froze the water next to my bed a few times.
Now I don't have that problem. I still like a cool room, but I don't have to have the windows open.
Acupuncture and NAET share similar theories. I would get tested for gluten sensitivities if I were you.
Edit: I laughed and cried when you wrote about the doctors being worried about you holding your breath and them asking if you were a swimmer. I was a swimmer and even nearly qualified for the olympics. I had problems with blood clots and one of the first was in my lungs. It nearly killed me, but the emergency room doctor I saw dagnosed me with bronchitis and sent me home because I could blow so hard on his machine. That night I nearly died and the tech at the hospital said it was the biggest clot he had ever seen. He couldn't believe that the doctor had sent me home. I wasn't suppose to know this, but he had let the intercom on when he was testing me.
Ack.. can't believe how much of your story is similar to mine. At least health wise. Thank you for sharing it.
Yowza.. I totally appreciate your candor and always enjoy your writing style.. Reading your story & Jan's, i was reminded of this article in the New Yorker magazine : Germs are us. I found the article to be a fascinating read.
Fascinating article, Nita. Thanks for sharing! Lots of food for thought.
I'm already looking forward to Facelift 2013!!! :D
John, I've been tested for various specific allergies, i.e., wheat, egg, corn, but register no allergies. Nothing induces an anaphylactic response. It all seems to be an immune-based reaction. I eat something my body determines is verboten, and my intestines shut down, absorbing nothing. I was surprised along the way to realize that soy also induces the same reaction.
There's so much misinformation out there, though. Most resources state that if you avoid gluten for a week or two, you should have your answer. The reality is that it takes 3 full weeks for your villi to regrow and only then do you start absorbing nutrients properly, so the actual length of time that you need to give the diet trial is much longer than 1-2 weeks. But it is so worth the commitment -- it can create a sea change...
A big part of "climbing," well, old school trad climbing anyway, is discovering oneself, in a particularly unforgiving, unconventional and highly individualistic way. Big risks, huge potential rewards.
You are on a parallel journey of individual discovery, using experiment, force of will, honest self-assessment.
What is so cool is that it is working so well for you! Surely, Bill, so proudly independent, innovative, creative, would be very, very happy and proud.
Thanks for this report. All the best for the future!
Hubris: (N) "Excessive pride toward or defiance of the gods, leading to nemesis."
A couple of weeks after writing the original TR, my dad and stepmom took me for an innocent birthday lunch at Legal Seafoods (yuh-hum!), and the results were disastrous. I wound up with the worst gluten exposure I've experienced since I was diagnosed.
No more fear? Hummmmm....
Feeling better than I ever have in my life? Welll....
No more physical pain? Yeah...not so much.
Depression gone? Eh, no.
Hubris, with an extra kick.
I've been largely absent from the forum because I spent a good couple of weeks curled up in a ball in pain and without an ounce of energy, ravaged by insomnia, followed by another couple of weeks where I was hit with depression full force. The exposure did so much physical damage that I wound up seeing a new gastroenterologist because I felt like death warmed over. I wound up in his office in tears because my neurotransmitters were completely out of whack. I spent most of the last week cowering in fear of the prospect of not being able to dig myself out of the depression this time, and wondering how in the Hell I lived the other 41 years of my life in this state of mind.
The good news is that I found a hospital with a dedicated celiac disease department, so I will be getting top notch follow-up care over the next several months. I'm also coming out of the depression, which is a huge relief. It's such a scary place to be when you've sunk down until your body is able to start absorbing nutrients and manufacturing neurotransmitters again. So much for having things within my control!
I wanted to take a moment to thank everyone for all of the positive encouragement, because it's helped me immensely and I am so grateful for your kind and thoughtful words.
If there's anyone out there teetering on the edge, debating whether a gluten or grain free diet might be worth giving a shot, go for it! It may be just the thing that turns your life around, as it did mine.
Quite a song from the black chair. Congratulations on your fortitude and telling the story.
My sister and her 2 boys have celiac syndrome. They keep well away from gluten. Restaurants usually have gluten-free menus these days but to do it right they need to have separate cookware.
Prozac is not effective against mild to moderate depression except as placebo, but the placebo effect is good enough for some. The federal requirement for establishing the efficacy of a drug is much less demanding than that for ensuring that the drug is safe. If there are two studies that show an effect, that is good enough. There could be another 50 that don't show an effect.
You could write a book, yourself, but I am fascinated by a series on depression running now on CBC radio. First part of 3:
MH2, thanks for that link and I listened to the first in the series and am looking forward to listening to the other two.
What still boggles my mind is that cause of my life-long battle with misery is food based. That I was lucky enough to figure it out was chance at best. The medical profession has a long way to go in first educating themselves about finding root causes of illnesses, and then working with their patients to help them to truly heal...and not to simply drug them.
I know I'm beating a dead horse here, but I truly believe in my heart that this is the same illness that Dolt suffered from (and likely his mother before him). I know it doesn't change anything. But from where I stand, I understand his misery. And I'll talk to anyone that will listen until I'm blue in the face because this ignorance within the medical community has to change.
How many millions of people are suffering from severe depression needlessly because the medical profession (including my own father, by the way) doesn't believe that food could be the real cause?
Back to my feisty self...off soapbox...sheepish grin.
The medical profession does pretty well at helping people with acute illness. Chronic conditions are a different challenge. Recently (if we consider medicine to start with Hippocrates) there has been lots of attention paid to how diet may predispose people to heart disease and diabetes, for example, and you can bet that connections between food and mental illness have been and are being looked for.
But it isn't easy to do lengthy studies on large groups of people, especially if the study concerns what people eat, because you can't trust their self-report.
It was part 3 of the Ideas program Re-Thinking Depression that had a special connection to your own story. A woman named Sara tells about her years with depression and how a change in her diet helped her.
Everyone's story is different, though. Gotta expect that when our personalities are different. If we ever go over to cloning then it will be one-size-fits-all.
Thanks again for what you wrote. Treasure the individual! And the occasional set of twins, triplets, etc.
How I missed this posting will never know. Would have missed this but think there is a spirit or for some reason why all of a sudden this posting will take me here hopefully the first of next week and tell me more.
Need to get my voice to work better seems to work if I talk slowly but know your pain with doctors have the same frustration. I am sure when I tell him of my symptoms he will look at my big toe.
What a journey! Sounds about equivalent to Joe Simpson crawling out of the crevasse and dragging down the glacier. What boggles me is how much you've accomplished given that condition. One tough lady! Well done.
This may be one of the most amazing, truthful things I've ever read on the Taco.
Thank you for your bravery, your honesty, your very words.... your strength.
Thank you for sharing your journey...
I too have FM, brought on by continued physical traumas endured as a child and teen, PTSD, spending 20 hrs giving birth to my son at age 20, and then a back injury in my early 20's.
I seldom meet other women with FM, and most people would never guess I have FM.
The following struck a cord with me:
I saw the FM specialist at the end of August 2011, shortly after the diagnosis. He diagnosed FM (a syndrome, not an illness) and "prescribed" non-impact, aerobic exercise at least 45 minutes at a time at least 3-4, if not 5-6 days per week, getting a good night's sleep every single night, eating a healthy diet with lots of good fruits and vegetables and simply just making good choices.
I refuse to take the medications RX'd today for FM, instead opting to simply take care of myself. The ONE sport I could do without issue was to climb, though at the end of a hard day of adventure, my body would sometimes give out, forcing me into a tent for a bit of rest. I liked listening to my body and resting instead of giving up my active lifestyle and taking prescription medications.
You are an inspiration, young lady. Keep on keeping on!
And thank you again for sharing this.
Nice. I'm in a similar boat, but smaller boat... I'm convinced there is something more than just gluten (and soy and sulfites and dairy and...) putting holes in mine... it is sinking fast, but I inherited a cynical sense of humor that keeps my head barely above water.
I wish I could convince others in my family how important their diet is. I see them suffer like I used to, but they are unwilling to make the necessary sacrifices.
Wow, I can only echo what many others have already spoken! I'm late to the game here. I sometimes save posts for reading later, especially when they are longer and seem particularly engaging. I'm glad I saved this one.
Yours is an amazing story, but all the moreso because of your willingness to share it (and the articulate way in which you tell it). The writing seems to be part of the healing and "listening to your body". I sense it's also about listening to your inner spirit as well.
It's so good to see you getting compassionate support here. Kind of a band of merry misfits working together (at least some of the time!). For some reason I'm picturing the Island of the Misfit Toys from the Rudolph Xmas cartoon! Ha ha!
As we go through this life, we cannot avoid the ups and downs. But we can expect them and be better able to deal with them as they occur. It sounds like you're making great progress on that path.
Sooo...the gluten-free diet isn't cutting it anymore, as my body rejects all forms of animal protein and now soy, too. The physical pain is back with a vengeance, which is just crushing my soul.
Two physicians I saw recently both chalked it up to my imagination and depressive symptoms. I'll refrain from sharing my opinion of their opinions. Eh-hem.
It's taken me over a month to talk myself out of my belief that perhaps they were right.
Tonight I entered a zone I never imagined experiencing...that is, the zone of cleansing with an all veggie/fruit menu for 10 days. At the end of the 10 days I will decide whether it was at all beneficial.
Would be grateful for and insights, recipes, advice, etc.
I did a cleansing diet one time, a week of olive oil, lemon juice, psyllium husk, garlic, not much else. It felt great, much to my surprise. But this was a temporary deal. The guy who's idea it was, who talked me into it, he blinked first, ate a big steak one night.
it was pure choice, either way. I cannot imagine feeling like I HAD to do something like that.
If I understand correctly you are dealing with an auto immune disease? If so that is very unfortunate and difficult. With many autoimmune diseases there are more than one involved. They can flare up and be worse at times.
It seems you need to find a doctor who specializes in these and will work on treatment that is best for you.
Not all climbs are physical or involve mountains -- thanks for sharing. I'm sorry to hear your immune system has been acting up again and hope that the fruit/veg cleanse, or something else, helps soon!
Are you familiar with the mailing list "Immune"? It's for people with immune system problems, multiple chemical sensitivities, allergies, etc. Here's the site it's on -- it has lots of resources: http://www.immuneweb.org/
I tend not to post in a straight line -- my shyness gets the best of me -- so I've been debating for a couple of weeks whether to post this update. (I wrote a bit about what's been going on in the interim in a TR called "Wings", though it's a bit "out there", even for me). But my desire to share information that might help someone else has finally won out over my fear of self-promotion in the bumping of this thread. At least, I think it has. Let's see if I can leave the post up for 24 hours. ")
Thanks to some really great insight and much appreciated encouragement from our fellow STers, I made an appointment (my last-ditch effort to give Western medicine a chance) with a geneticist at the end of the year. To my great surprise, they spent more than two hours with me, rigorously going over my entire medical history. Then out came the tape measure...wha?
It seems that my wing span is greater than my height. My legs are proportionately longer than my torso. My hands are..."large" as the doctor put it, and my fingers are long. My face has grown longer as I've aged, and despite my efforts to conceal, my forehead can still compete with Half Dome. As if all of this pleasantry wasn't enough, I have some kind of "chicken" deformity in my sternum. Curiously, the doctor said that I also have certain other facial features, but spared me the detail. Phew, because I was starting to feel slightly odder than usual.
As it turned out, I really didn't need to bring any of the genetic data I had from 23andMe because one of the homozygous mutations (i.e., one copy from Dolt and one copy from Ann) that I have just backed up what the doctor suspected from just looking at me (!). The jury is still out on the pint of blood work I had to have done (okay, slight exaggeration), so I'll post again once this has been sorted out.
It looks like I may soon have an answer to my life-long struggle with pain, depression and more recently, protein intolerance. Truthfully, I can hardly believe it.
What totally blew me out of the water, though, was the doctor's reaction to the most recent pictures that Don Lauria posted of Dolt on the Dolt Stories thread. We share the same physical anomalies, plain as day. This seemed to reinforce the doctor's suspicions. Don may very well have saved my life, yet again, by keeping the memory of his dear friend alive. Statistically speaking, if the doctor is correct in her suspicions, I am indeed very lucky to still be alive.
23andMe was recently suspended by the FDA from providing health reports based on their genetic testing, until further notice. However, that doesn't mean that consumers can not still order the testing for "genetic" purposes. You still get the same information...all for about $100. Once you have your raw data, you can run it through various other sites to gain more insight into the genes that may have an impact on your health. Promethease.com is a great site that links your gene mutations to established research papers, and this is where I learned volumes about my genetic makeup. SNPedia.com is another great resource.
My point in writing about this is that there are great resources out there that can help you find your way if you're having trouble getting diagnosed. You have to be willing to roll up your sleeves and really dig in, but the investment, at least in my case, has been well worth the effort.
P.S. If the doctor is correct, the inborn error of metabolism that I suffer from was only discovered in 1962 -- hardly sufficient time for it to reach mainstream medicine in time to help Dolt, particularly since it is a disease associated with infants. When I think about the fact that Dolt's mother likely succumbed to it in her mid-30s, and Dolt his late 30s...that I am still here at 43 is just short of a miracle. My heart to you, Don.