Diana's Blog

Or, How I'm Kicking Fibromyalgia's A**... 

Fibromyalgia and Chronic Fatigue Syndrome are still largely gray areas in medicine. The trick is that there are many possible causes of chronic fatigue and/or pain: mononucleosis, Lyme disease, Epstein-Barr virus, thyroid or hormone imbalance, hidden infection, or simple overwork or burnout, among others. Doctors do their best to diagnose and treat symptoms, often missing a larger, underlying cause.

This, unfortunately, is my story. Misconceptions, as well as inherent problems within our healthcare system, prolonged my quest for an answer to the mysterious, cyclic fatigue that has tainted my whole adult life, and which finally brought me to my knees earlier this year.

After 16 years, I believe I’ve found the best available answer. It’s the work of an 83-year-old endocrinologist, R. Paul St. Amand, M.D. His 40 years of research and clinical evidence fly in the face of some popular theories – and his treatment is the first and only thing that is working for me.

Why This Article?

My passion for overall wellness (as opposed to weight loss or physical strength alone) stems in part from my own longtime struggle with fatigue and illness. I’ve seen others struggle with similar fatigue, pain, muscle dysfunction, and other debilitating symptoms, suffering needlessly. I am living proof that you can have an ultra-fit, healthy lifestyle and strong mindset, yet still become debilitated by a mysterious condition that slowly takes over your whole body.

The work of Dr. St. Amand is recognized by few, but I feel it’s a goldmine. The Doctor has a low profile, because he does not practice medicine for profit, and does not buy in to corporate pharmaceutical schemes. He practices out of passion, as he and his children have also suffered from fibromyalgia. Dr. St. Amand and his children now live full and healthy lives, thanks to his treatment, the Guaifenesin Protocol. Not to mention, the 83-year-old Doctor looks 75 tops, and is sharp as a tack.

Popular treatments for fibromyalgia involve expensive medications with significant side effects – sometimes as bad as the original illness. --For example, Lyrica, Cymbalta, potent painkillers, muscle relaxants and narcotics. Often a patient will get temporary relief from some symptoms; but all symptoms still worsen over time.

Though the Doctor himself has fibromyalgia, he believes that most sufferers are women, with a few exceptions. Men can have symptoms, or can just be carriers of the related gene. He and his team do not yet know the reason for this gender-related difference.

What IS Fibromyalgia?

Fibromyalgia is a syndrome. Contrary to popular belief, it is not an auto-immune disorder. Nor does it involve “toxins” of some kind. Another popular, neurological theory is that the pain and some of the fatigue of fibromyalgia are due to hypersensitivity of pain receptors in the brain. Medications used to treat the problem dull perception of pain and good sensation. It’s a temporary, pain-masking situation. I ask, What about the many other symptoms involved? –And what about the potent, unpleasant side effects of the medications?

Dr. St. Amand has isolated a genetic dysfunction of the kidneys that prevents the body from expelling excess phosphate. Phosphate occurs naturally in the body, in small amounts; and in most foods. This fundamental imbalance increases steadily over time, stressing all physiological systems. With a gradually growing amount of phosphate build-up in soft tissue and bone, the body can no longer recover effectively from normal stressors.

Phosphate is one of two causes of significant muscle fatigue, along with lactic acid (Westerblad, Allen and Lannergren, 2006). Hence the frequent, generalized, flu-like ache and weakness in my muscles, which compromised all of my triathlon racing post-2003, and forced me to forfeit many events!

The body keeps attempting to deal with the excess phosphate. Phosphate gets tucked into soft tissue and bone, but the level eventually becomes unmanageable. The bloodstream does not tolerate free phosphate, and pulls calcium out of the bones to bind to the phosphate. Excess phosphate also interrupts A.T.P. production in cell mitochondria, which leads to greater fatigue.

Over time, the phosphate:calcium dependency causes bone degeneration, leading to unexplained osteolytis and then osteoporosis.

This phosphate imbalance also indirectly creates a network of lumpy, painful spots throughout the body. Fascinatingly, the muscular pattern is specific and uniform across patients, no matter their ages or backgrounds. For example, all of Dr. St. Amand’s thousands of patients have had lumpy, tender points in exactly the same, specific areas in the neck, upper back, abdominal, left hip, and left outer thigh muscles. Part of Dr. St. Amand’s diagnostic process is to map the muscles with his hands, and mark the lumps on an anatomical diagram. At successive visits, he repeats the mapping process, blind to earlier results.

Dr. St. Amand’s theory is still considered “a theory.” However, no-one has been able to disprove it. The clinical and academic proof the Doctor has (of the kidneys’ involvement, and of the genetic component) make the most sense to me of any related studies I’ve read. It’s possible that what he calls “fibromyalgia” is one of a few, similar conditions – I don’t know for sure. But, I know that I fit his diagnosis, and the treatment is working on me and several thousand others.

NOTE: Dr. St. Amand has found a correlation between fibromyalgia and hypoglycemia, or carbohydrate intolerance. These two conditions have several overlapping symptoms. Hypoglycemic patients also commonly have faintness, hunger tremors, sugar craving, and weight gain. About 30% of his patients have both. I do not have hypoglycemia, and am not covering that aspect in this article.
What Are the Symptoms?
Fibromyalgia involves the entire body, precipitating a myriad of symptoms. Different people display a common symptom set, plus a number of unique symptoms, depending on genetics.

These are the common symptoms as identified by Dr. St. Amand:

• Fatigue, irritability, anxiety, depression, impaired focus and memory, insomnia, A.D.D.

• Pain and generalized stiffness and ache in all muscles, tendons and ligaments

• Shooting pains and throbbing ache in muscles or joints that prevent or disrupt sitting or sleep

• Arthritis-like stiffness in joints, plus excessive and increasing joint “popping”

• Restless legs

• Headaches (moderate to migraine level), dry, itchy eyes, blurred vision, dizziness, ringing in ears, sensitivity to light and sound, allergies

• Unexplained sweating, skin rashes, brittle nails, dull or thinning hair, excessive cold or heat, itchy and “prickly” skin

• I.B.S., difficult digestion or food intolerance, gas, pain, acid reflux, other G.I. issues

• Frequent urination, bladder pain and/or infections, pelvic pain, vaginal pain or burning, vulvitis

• Chronic yeast infection, vaginal and systemic

• Heart palpitations, and/or arrhythmia

• Unexplained weight gain, low-grade fever, low immunity to infection, morning eyelid and hand swelling and puffiness that changes to ankle swelling by evening

Here’s the truly weird part: The fatigue and other symptoms are cyclic. So, you keep thinking you’re getting better, and you look and act OK for short periods of time, but you regularly dip into an ill state. You may think you’re over-working, over-training, or doing something else wrong…but the “crashes” happen no matter what you do or don’t do. This cyclic nature also makes it impossible for others to understand what you’re going through, and you end up isolated in dealing with the illness.

For greater detail on the cause and process of fibromyalgia, see Dr. St. Amand’s helpful book, What Your Doctor May Not Tell You About Fibromyalgia. The new, revised edition is due at the end of this year. I also recommend I Have Fibromyalgia But It Does Not Have Me! by Chantal K. Hoey-Sanders. Sanders’ career as a Spanish teacher was rudely interrupted by the rapid and mysterious breakdown of her health. Following Dr. St. Amand’s treatment protocols for fibromyalgia and hypoglycemia restored her health, and enabled her to fulfill her dreams of having a baby, and resuming her teaching and writing.

Why Didn’t I Find the Treatment Sooner?

When I first found Dr. St. Amand’s website in 2003, I was discouraged and skeptical. The verbiage from the Fibromyalgia Treatment Center emphasized chronic pain as a central symptom. The other symptomatic patterns described sounded very familiar, but at that time I did not feel acute, intense pain. I had cyclic, chronic fatigue with flu-like symptoms, overly tight muscles with slow athletic recovery, and gradually worsening psoriasis, G.I. symptoms, and anxiety/depression.

Now, in hindsight, I know the fatigue, tightness and soreness levels in my muscles have been abnormal for many years; but how do you know when you only have yourself to compare to?

So I continued living my life as well as possible, working triathlon training around the major fatigue “crashes” I had every 3-6 weeks, sleeping as much as possible, researching, and trying just about every remedy under the sun.

I was only able to finish two of 13 half-iron triathlons without several urgent stops at the porta-potty. Those times, I went entirely gluten-free, avoided fiber during race week, and was lucky to be on an “up” cycle on race day. I did have to stop briefly, but stumbled to the finish line in well under five hours, and then headed straight to the restroom.

All of my races after 2003 were compromised by a growing state of muscular fatigue and weakness. On the worst days, it felt like the flu. On the best days, I cruised through events two effort zones below target. Yet, no doctor could find the source of the problem. I kept running, feeling that if I could still do triathlons, then the mysterious illness hadn’t got the best of me.

Fibromyalgia is not a muscularly degenerative condition. In time, it does degenerate bone and organ tissue. However, if it’s left untreated, you gradually lose muscular strength and function, much like with a degenerative muscular condition.

The worst part, for me, has been the overbearing, debilitating fatigue. With high pain tolerance and the ability to modify exercise to suit, I can deal with pain, injury and some compromise. But the inability to DO things is mind-blowingly frustrating and saddening. For a curious, adventurous, driven mind, missing out on life just isn’t OK.

How Does Fibromyalgia Progress?

Many people have a single, very bad crash, or perhaps multiple crashes, with one that finally debilitates them to an intolerable level. Again, the up-and-down nature of symptoms makes it very hard to know what’s going on!

I personally crashed with a terrible flu at age 23…and then couldn’t completely recover. For several years I cycled up and down every few weeks, thinking I was getting better as I continually improved my lifestyle, and even got triathlon-fit. But I always buckled too easily under work, emotional, or viral stress, and crashed pretty hard a couple more times. Since childhood, I’d been slow to recover from illness. All the while, I did trial-and-error on my body with various remedies, to no avail.

Having psoriasis (a genetic, auto-immune skin condition) complicated my picture further. Ironically, anything that boosted my immune system made the psoriasis worse; and anything that improved my skin made me feel sicker.

Finally, a long series of miscarriages and related surgeries took me down by January of this year. Despite a multitude of doctor visits and tests, I got even worse through the spring. That’s when a local hematologist recommended I see Dr. St. Amand.

At one point in my health troubleshooting process, I drew a diagram of how I’d felt over the years. My detailed triathlon training logs revealed a bigger picture of symptoms and energy level over time.

When I first saw Dr. St. Amand in May of 2011, he assessed and diagnosed me, and then explained the illness. As he spoke, he drew a diagram of how fibromyalgia progresses. I sat and stared at an almost-exact replica of my own drawing.

This is Dr. St. Amand’s version (excerpted from his book, What Your Doctor May Not Tell You About Fibromyalgia):

How Does the Treatment Work?

Guaifenesin is the expectorant ingredient in cough medications, like Mucinex. It is sold over-the-counter, and has no known side effects, in doses up to 4000-6000 mg. per day. Guaifenesin has been for decades to treat gout (liver disease), and even arthritis.

The Guaifenesin Protocol is a titrated, twice-daily dose of gauifenesin, which enables the kidneys to expel excess phosphate normally. It “opens up the plumbing,” so to speak.
The treatment is not a cure, but completely reverses symptoms, to a point where the patient is stable and well.

The reversal process looks like this:

You “cycle” with pain and fatigue symptoms, with cycles gradually getting less intense. Eventually you stabilize with no symptoms, and feel well. Many patients report feeling better than they’d ever felt, as many start developing symptoms early.

There are two caveats to the treatment:

a) You must avoid high concentrations of salicylic acid, as these can block the action of guaifenesin. You can eat normally, but must avoid topical products containing salicylates (very generally - plant oils, gels, or extracts, plus any chemical with “sal,” “camph” or “menth” in its name).

b) The treatment takes your body in reverse through the pain and fatigue cycles you went through to become really sick. It takes time – how much time depends on how long you’ve been ill, and how physically active you are. This means you may suffer even more in the first few weeks or months of the protocol. However, you can adjust dosage to minimize suffering.

If you don’t have fibromyalgia, you will not respond to guaifenesin by feeling worse at first. You’ll probably feel no change, except for improvement in arthritis symptoms if you have those. This phenomenon supports Dr. St. Amand’s theories (a la television’s popular character, Dr. House).
The Guaifenesin Protocol is not for the faint of heart. But, you will get your life back. And, you can stop any time, if you need a break, or feel it’s not for you.

To read real stories of recovery, visit the Gauigroup forum, and search for “progress report.” And, read the profiles of Fibromyalgia Treatment Center’s volunteer assistant team, all of whom have recovered.

Am I Better Yet?

I am five months in with treatment. I have increased my dose a couple of times since I started, thereby increasing my pain and fatigue again. The Doctor recommends increasing as much as you can tolerate, as a higher dose = faster recovery. As it is early, I still experience daily pain and fatigue, which worsens in short cycles.

Exercise also speeds recovery. I do whatever I can to continue low-intensity exercise. Despite my low energy level and weaker body, I still look relatively fit. I also practice exemplary nutrition, and sleep as much as possible.

Over time I’m improving significantly. At my worst in the first half of 2011, I was functioning and feeling about 30% (very bad).  Now I average 60-70%. My detailed, daily symptom log tells the story.

Here are the huge improvements so far:

• 24/7, monster headaches are 90% gone.
• Facial and hand puffiness is greatly reduced.
• Digestion is better: I can eat small amounts of gluten and dairy again, without G.I. distress. My stomach feels more comfortable during exercise, and all the time.
• Shortness of breath/oxygen is 80% gone. By spring 2011 I could not walk up a hill slowly without stopping to rest. I also could not talk at the same time I was walking. It felt like running a 200-meter sprint! Now I’m hiking, riding and even jogging uphill again, on better days.
• General G.I. distress is almost gone (bloating and other unpleasant issues).
• Major pelvic cramping and pain is gone.
• Body temperature is up 1 degree (it was too low my entire life until now!).
• Blood pressure is up to normal (from pass-out low).
• Knee and left thigh pain are 90% gone. Back, neck, hip, and shoulder pain is 60% better.  A few months ago I could not kneel on the floor, squat any loads, run, or swim at all.
• I’m mostly free of intermittent, unexplained depression and anxiety.
• I can jog, ride my bike, and even swim a little. A few months ago, I could not run or swim due to overwhelming joint pain and extreme shortness of breath.
• Arthritis symptoms in my hands are mostly gone (they still cycle on and off a bit).
• About half the lumpy, tender points in my body have disappeared. (Since some areas “clear” more rapidly than others, this doesn’t necessarily means I’m halfway recovered.)

I don’t know exactly how long full recovery will take. But, I have a gut feeling that I’ll get there. Time will be the ultimate test. In 1-2 years, am I fully recovered? In five years, am I still in remission?

I don’t even know what it feels like to have stable energy, but I’m certain it will be worth the wait.

What Else Have I Tried?

The 16-year list is too long and detailed to include here, but here’s a representative summary:

• Increased sleep and/or total rest
• Excellent nutrition plus gentle exercise (including yoga, Qi Gong)
• Intense exercise (phased, progressive triathlon training with extra, built-in rest)
• Massage therapies (many kinds)
• Breath therapy and meditation
• Dietary changes and restrictions (many)
• Acupuncture
• Chiropractic care
• Hyperbaric oxygen therapy
• Hypoxic therapy
• Symptom-specific treatments for G.I. problems, psoriasis, anxiety, and depression - including many medications and supplements, prescription and herbal.
• Multiple natural or herbal supplements for energy and hormone balance
• Various “detox” therapies
• Energy healing
• Cymbalta (a newer anti-depressant that also dulls perception of pain and good sensation)
• Ayuverdic therapy
• Dead sea salts
• Hypnosis or “guided imagery”
• Cognitive-behavioral therapy

...And to continue doing triathlons with a progressively weaker body, I used sleep, great nutrition, massage, trigger point therapy, functional strength training, tons of stretching, contrast baths, and sleep aids…until I could no longer put one leg in front of the other.

None of these things brought me relief from the chronic fatigue for more than a matter of hours. The illness continued progressing like a slow-moving locomotive, no matter what I did or didn’t do.

I will attest that good nutrition, moderate massage, exercise, and frequent use of advanced stretching techniques are critical in the recovery process, and very useful in daily life. I heartily recommend all of these.

Want More Information, or Need Help?

If you’re experiencing symptoms like I’ve described, or you know someone who is, please feel free to reach out to me. I am dumbfounded that so few people know about Dr. St. Amand. I’ve personally met other women with fibromyalgia or chronic fatigue. The luckiest ones are managing symptoms somewhat, but still have cyclic fatigue and pain. Many just suffer, and still others are so debilitated that we don’t see them at all. I’m only happy to share what I’ve learned, and hopefully minimize others’ suffering.

I strongly encourage anyone struggling with the symptoms described here to get assessed by a doctor trained in Dr. St. Amand’s diagnostic protocol. If you can visit Dr. St. Amand in Marina Del Rey, CA, DO IT. Do not wait. You may not have fibromyalgia, but what does it hurt to find out? If you do, you have a viable option for turning your life back around.

To find a doctor in your area who works with Dr. St. Amand’s protocols, contact the Fibromyalgia Treatment Center.

When our three-year housemate moved out, we realized we needed to re-paint our spare bedroom, for ourselves and for a new housemate...and I jumped on the opportunity to bring our downstairs bathroom into the 21st century.

The floor was already nice, diagonally-installed tile, updated in 1995 to match the downstairs halls and kitchen. I didn't like the shiny, chrome fixtures, and the metal on the vanity lights was eroding and rusting.

I couldn't understand why the original remodelers had put bright, honey-colored wood with blue and burgundy tile; or why the previous owners had painted white on top of blue, and left globs and rivulets of paint near the ceiling and baseboards. They'd also left several areas un-caulked, leaving lovely gaps between vanity and wall, wall and baseboards, and cabinet doors and wood.

The mirror was a piece of unframed glass, mounted with those cheesy plastic clips. (I forgot to take a "before" pic while the old mirror and lights were still up. In this photo, our painter had already done the caulking.)

The bathroom before (fixtures stripped and new caulking already done):

We already had Ward Hardy, the painter, on the job, and we had some leftover wall paint from three years before. I got one additional can of Sherman-Williams "Virtual Taupe" to cover the vanity and wood picture frame, plus a cheap coffee table in our family room (whose paint was chipping and sticking terribly).

First, I'd fallen in love with this driftwood mirror from Pottery Barn. I'd been staring at it for weeks, even before I decided to change the bathroom. I realized it probably wouldn't go on sale for several months, if ever. I shopped for cheaper equivalents, but they weren't the right size, and/or didn't look as natural and pretty.

And, after researching how to glue driftwood on the existing glass, I found it was going to be expensive and time-consuming to acquire small, treated driftwood and make it work. So, the PB mirror became the Big Purchase ($200), and I made it the focus with which to coordinate.

Since we were having the wall painted and patched, now was the time to change fixtures. I shopped for pewter-colored fixtures online, and ended up with some great deals on sink fixtures (eBay), towel and T.P. rack (PB clearance), vanity lights, and cabinet knobs. 

The vanity lights required a couple go-arounds, as Home Depot and Lowe's were short on choices -- bronze and nickel are still the trends -- and my first online purchase from CSN Stores ended up being more like brushed nickel than pewter. Back it went; luckily, shipping was free! I ended up buying lights online from ATG stores, after a quick phone consultation with their customer service rep. re: color. I'd found the Seagull lights on eBay, but ATG stores actually had a better price.

I found the cool, swirly knobs at Home Depot online, $14.99 for a pair:

...And the look started to come together! Tafi was our best little helper, the whole time. Oh, he's a verrry good supervisor.

The toilet paper holder is supposed to be a combination T.P./magazine rack. The T.P. mount is a little close to the wall, but of course you can put the roll on the long rack instead. I think this minor defect was why the fixture was $10. Whatever; it's bendable too!

The towel rack, also from PB clearance. It wasn't the same style "family," but I thought it coordinated well. I already had the taupe-colored towels:

The vanity lights wouldn't fit with the mirror with lamps hanging downward, so we mounted it right-side-up. Fortunately it worked, even with the bathroom being somewhat small:

The final touch was the recycled-glass soap and lotion bottles (Target, $12 each). I also got two recycled-glass bottle vases from West Elm clearance online, can't remember the exact price, but they were less than $20 total.

The only thing with the fresh grass from our yard is that it's a bit too fascinating - almost lost the sink vase! I may have to get some dune or meadow grass, pre-dried.

Nighttime view (before I got the glass vases):

View upon entry:

I put the other recycled glass vase (aqua-colored) in the corner of the tub, visible from the doorway. The curly, dried flora I got for it isn't in yet...I'll have to add a photo!

...And, the money stops there! But I'm very pleased. Huge thanks to - what is the term? "DH?" Greg for drilling and plumbing!

...Of course, Greg couldn't have known I had some weird illness; I didn't really know myself. I worked full-time, had bought my own condo and car, and was doing half-iron triathlons. But I had to take car naps most afternoons just to get by. And I'd always had this mysterious, cyclic fatigue, which persisted no matter how hard or easy I took it. And then my psoriasis symptoms started to get worse - but they didn't really start to explode until just before our wedding.

Obviously, if I'd had any useful input from doctors, research, peers, whatever, sooner -- I would've sought specific help with "fibromyalgia." But as I've mentioned before, I didn't have notable pain until about 2008. Muscle soreness was increasing before then, but then so were my age and my race distances.

So today -- like just about every day of the last two+ years, but today in a more height-of-conciousness way -- I was feeling bummed about being a burden to Greg. Or really, bummed about this debilitating state I seem to have born with through no real fault of my own, but which has tainted everything I've done for the last 16 years. ...And that Greg, being a caring husband, is so affected when I feel like shit. Some days, I feel like shit, others just like crap, and then for weeks on end I felt like the shit streaks that line the bowl for weeks because no-one bothers to clean them. Or maybe like said shit streaks, once they've been flushed down and are festering in a dark stench of sewage. Those days and weeks, it's like having the worst flu ever, plus full-body arthritis, plus a nice dose of (situational or chemical?) depression to top it off.

It's shitty enough that we had eight miscarriages in a row -- all the while testing beautifully clearly on all fertility investigations, and following the advice of "top doctors." And then I never recovered, so the surreally bad dream continues with a new/old slant. And Greg is getting tossed all around the boat with me.

It's week 7 - really week 6 at an effective dose - in my guaifenesin treatment prescribed by Dr. St. Amand of Marina Del Rey. The progress so far is enough to make me start to dream for real about a low-fatigue life. Well, it's not about not being tired sometimes, or even exhausted; but "fibromyalgia" in Dr. St. Amand's definition means you can't recover from activity. As your kidneys, muscles and body tissues get increasingly over-taxed, recovery slows to a halt. What I'm looking for is the ability to work, and then recover, and then work again. I was able to do this in a modified way for several years, but never quite normally, and with plenty of suffering along the way.

Even though my pain has decreased a lot, and I've started to have some halfway-decent days, I'm still waiting to see if my energy will stabilize enough for us to plan a weekend trip. For months it has been like, "Let's try to go hiking this weekend...oh, never mind; I can't stay out of bed. OK, maybe...now! No...how about...now? Quick, let's go!" Basically I've been working with shrinking windows of opportunity, almost my whole adult life.

I think it's part of human nature -- If you're given enough chance and choice, to wonder whether the grass might be greener over there, or to be fooled by overly simple appearances. These people and families all around...they look like they have something you don't - either more resources, or a family, or time, or energy. But it's in the nature of being that you can't have everything all at once, and freedom of choice means continual limitations, a steady stream of paths not taken. And so the curious or un-Buddhist among us continue to wonder, What would it be like if...?

But Greg and I have this very real feeling, like our lives haven't really started yet. We've been fighting uphill for so long in our separate ways; and then in new ways once together. For short periods we've felt like maybe things were finally evening out - but this condition I have doesn't work like that. We don't know if the dysfunctional tightness in my muscles, and the deep, bone-aching fatigue contribued to my miscarriages, but it's very possible. At least, in combination with my over-35 age stamp, it could be enough.

Today I was riding my bike (slowly), and appreciating being able to do so. It allowed my feelings to gel into thoughts a little better, and I let myself sit with that sadness, that burden. If I could grant Greg one thing right now, it would probably be the ability to detach more from my suffering and enjoy himself a little more, at least most of the time. 

Empathetic freedom notwithstanding, I'll keep letting my dream unfold - to get better. I think it might really be happening. I don't think that everything will straighten itself out if/when I have stable energy reserves, but I will have access to many more tools, to make each day a little better, to find more satisfaction, even generate more cash so we can worry less about that.

I'm going to sign off tonight with a list of things I'm grateful and so fortunate for: Greg, my spastic-fantastic kitties, our nice house in coastal Carlsbad (hoping we can fill more of those rooms somewhat soon!), the better days I've been having in the last 1 1/2 weeks, having an appetite, being able to swim again and ride my bike a little more, my sister Lori, my really cool fitness clients, my ability to problem-solve and think creatively, and Doctors Stephen Eisenberg and R. Paul St. Amand, who guided me to the path to relief.

Sandwiched somewhere in the middle of almost 16 years of major chronic fatigue, I've been a competitive triathlete for 11 years. They say endurance athletes are always running from something; in my case, it was the mysterious fatigue and weakness that seemed to follow me no matter what I did, or how healthy and "moderate" I made my lifestyle.

In the first three years of triathlon, I actually felt better than I had since my first major fatigue "crash" at age 23. And I ran faster and faster. But the Mystery Condition was running too, and it was only a matter of time before it would catch up with me again.

Now I know I have fibromyalgia. I know that my diagnosis and treatment are still considered "experimental" medicine, but the doctor I'm working with pretty much nailed everything on the head. I've been to many, many health practitioners in 16+ years, as well as before that, as mysterious infections and issues (low blood pressure/fainting, unexplained hormone imbalance, colds, flu, random bacterial infections, you-name-it) popped up at will.

During my 11 years of competition so far, I've known all along I had this mysterious fatigue condition. As soon as I thought I was "really" kicking it for good, it would have me on my back again, out of training for days at a time, sometimes in bed with a no-fever "flu" for days. One week, I'd be stronger than hell; the next, so weak I could barely use my body at all. At ifrst I bounced back, just as strong again. I did pretty damned well in a handful of earlier races. But over time, I bounced back less strongly each time. I took stellar care of my body, and trained wisely (can honestly say I under-trained rather than over-trained, partly out of necessity). I did most of my races and events at 70-80%, always feeling deep down that I was capable of much more, if I could just shake that fatigue and weakness.

Of course I tried long rest periods, "easy" training periods, long off-seasons...and sometimes I'd come out of off-season feeling a little fresher. But it never lasted.

Ad photo shoot for Xterra Wetsuits, 2007 -- How could I look so strong, and yet feel so sick?

Finally I had to drop out of a couple of races. Those moments were the worst, worse than the ominous weeks or days before the events where the flu-like syndrome started closing in. I am probably the farthest thing from a "quitter." But there's a point where your body simply fails, and you have to listen before you do damage.

There's an amazing charitable organization, based in San Diego (home of triathlon), called the Challenged Athletes Foundation. Founder and triathlon presence Bob Babbitt (also founder of Competitor Magazine) started it as a support line for people who wanted to compete in endurance sports, despite major, life-altering physical injury or loss -- from individuals who gave up limbs at birth or in childhood, to war veterans.

Bob Babbitt, founder of Competitor Magazine and the Challenged Athletes Foundation

I don't believe anyone who hasn't gone through such an experience (like myself) can really imagine what daily life is like without, say, one or both of your arms or legs. --Let alone completing a triathlon in said state. But, I feel a kind of special empathy for these athletes who overcome daunting obstacles not just to live somewhat "normal" lives, but to live life to the fullest.

I've always felt like a "challenged athlete." I trained and raced for many years in a seriously compromised state. Even on some occasions where I felt OK otherwise I missed placing first in several long-course triathlons due to multiple, disastrous stops in the porta potty. --This was despite every dietary elimination experiment in the book, plus several other types of treatments...with again, no real answers. I made it to short- and long-course world championships on my 70-80% efforts, and then had relatively mediocre performances on the world stage. --All the while knowing I was missing a few gears.

I kept going, and kept trying my best with the 70% I had, because...I'd rather live life, than sit and wait on the sidelines while still, no-one had an answer. In the face of insufficient information, it seemed the only choice.

I've been fairly quiet about my struggles for all these years.

First, no-one really wants to hear chronic complaining (least of all myself).

Second, there were sponsors, who wouldn't take kindly to knowing I was "chronically ill." 

Third, I did *relatively* well in some events, and never wanted to make athletes I was ahead of feel badly.

Fourth, I desperately needed to hold on to the perhaps-overly-optimistic belief that either I was truly getting better; or I'd finally find out what the hell was wrong and how to fix it.

Then, there was also the constant, aching envy. Such an ugly word. --Envy and even resentment of other people, who treated their bodies far from temple-like, and yet could still do 40% more than I could, without paying with days or weeks at a time of horribly depressing down-time.

True, core energy is what I've been missing. I've been blessed with so many things in my life. Yes, I was able to appreciate good things; but chronic pain and fatigue are like an ever-present bell jar (a la Sylvia Plath), dampening much of your experience.

I didn't know precisly what was wrong with me until recently; but I knew unequivocally that something was wrong. It's just that, no doctor had a productive answer, and no treatment effected change or real improvement. Fibromyalgia is progressive; symptoms worsen with time and age. I've just been running and running, and troubleshooting a multitude of seemingly insurmountable health issues along the way...until finally, I couldn't run anymore.

After eight miscarriages (including three surgeries) in a row (also with no explanation despite a plethora of cutting-edge tests), I had my second massive, long-term fatigue crash. ...And at the end of this nightmarish tunnel came some light: Dr. R. Paul St. Amand and his fibromyalgia research. First, there was Dr. Steven Eisenberg, an Escondido hematologist who really listened and watched, felt that I might have FMS, and pointed me to Dr. St. Amand.

And so, while I am not "better" yet, and I'm still in this long, dark tunnel - which must get windier and darker before it can widen and brighten - at least I believe I finally might get relief from the horrible symptoms and debilitating fatigue I've been tolerating for so long.

In the two months since my diagnosis, I've needed to start grieving the loss of so many opportunities, experiences, fun or social events, accomplishments, even potential friendships, small moments of joy, comfort, or satisfaction. First I need to acknowledge how truly hard life has felt for at least the past 16 years. It's possible I've done more than some people do with able bodies in that amount of time; but for someone like me with a curious, creative mind and love of adventure and positive challenge, stting on the couch was never a welcome option. It's like there was this ghost life parallel to my own, Diana's Potential Life That Hasn't Happened - the life I might've been living already if I weren't sick. (This is the first time I've been able to accept that word, "sick," in reference to myself.) I got to be 70% of the athlete I could be; I had maybe 60% of the overall experiences I probably would've had my energy level been "normal." Many of my private moments involved discomfort, pain or exhaustion. I never showed these to others. Even my husband never really knew until recently how truly uncomfortable I'd been all along. It's not so much that I hid it intentially from him; it's perhaps that it was too painful for me to accept.

Now I'm 38, still with no kids but a loving husband who cares so much he sometimes can't show it, feeling like life is over and that it might be just beginning at the same time. Right now in this uncertain moment, I have tremendous hope that my fatigue and pain will eventually lift, because a few symptoms have already begun to clear. What if I could feel "good" in six months, or a year?? "Epic" doesn't begin to describe that possibility.

It's time to go rest now.

I'm exactly 3 1/2 weeks into Dr. St. Amand's guaifenesin treatment protocol. It's so early, I haven't even determined the ideal dose (I may have increased too quickly) - and yet, I've already experienced some startlingly positive results.

Current dose is 1500 mg per day, pure guaifenesin tablets - 600 in AM, 900 in PM. It's possible I was supposed to stay at 1200 for 3 weeks first, but I mis-interpreted some of the info. posted by admins to the online list group. I also haven't received Dr. SA's detailed book yet. But, I'm having visit #2 with the doc next week.

My general fatigue is about the same so far. It was slightly worse in week 2, a LOT worse in week 3, but better than baseline this week, so that sort of averages out to "same" so far. It's too early for averages anyway.

Body pain was almost overwhelming in week 2, as I said in my previous post. It's much mellower this week. I'm keeping a detailed, daily symptom log, so I can see patterns over time.

I'll interject here that, in the last two years, it was really difficult to tell which pains or sensations were due to miscarriages, and which to some other underlying cause. Now I haven't miscarried in 6 months, and I'm pretty sure I know which symptoms are which now.

AMAZINGLY, here are the positive changes so far:

1. My intense, continuous headaches have faded to almost nothing. Seriously, the headaches had become a daily event as of over a year ago, and then developed into a constant state over the last few months. They seem to have been caused by abnormal tightness in all head and neck muscles...radiating up from the base of my skull, up my temples, and sometimes pounding behind my eyes. Now they're almost negligible. Right now I have a mild, front-of-head headache, I believe because my period's due in 1 1/2 days. I expect it to fade in a few days - let's see.
   
   
2. Extremely tender spots in my upper back are less tender. I can tolerate deep pressure on those spots again. One spot just inside my left shoulder blade was particularly intense, swollen and lumpy to the touch. This is one of the two most common points in Dr. SA's diagnostic body map.
   
   
3. I've had no foot cramps for 2 weeks. The foot cramps started occurring late in long runs about 3 years ago. I'd stretch and massage my foot, and then continue. They gradually became more frequent; by April 2011, they were an hourly (or more!) occurrence. One or both feet would seize up several times during any walk or run, no matter how short. My ankles and calves became involved too - sometimes my foot or lower leg just gave out for a moment. Good thing I know PT techniques, and that I have strong, stable core and balance muscles!
   
   
4. My left hip and gluteus medius are not currently throbbing. In the last 9 days, I haven't woken up once due to aching joints or shooting pains in hips or limbs. --A new record!
   
   
5. My right shoulder (old rotator cuff injury) didn't bug me during my last swim -- and I swam (easy) for more than 30 minutes! In the last two years, it has bothered me so much and so often in swimming that I'd dropped to a couple of 25-minute-or-shorter swims per month - just to keep "water feel." This was despite A.R.T., stretching, shoulder stabilization exercises, etc. In fact, about a year ago I'd tried a series of rehab-style shoulder stabilization exercises - and ended up with more pain and injury. Couldn't understand why, at the time! How could my swim-forever "triathlete" shoulders have become so week and sensitive?
   

Probably, certain symptoms will continue to fade, as others cycle on and off, or temporarily become more intense as they're "cleared." For instance, this week my outer thighs are more tender. Last week, my hamstring connectors were super-achey; but they seem to be mellowing now.

Right now, considering a few minutes of jogging tomorrow, built into a walk...I'll let my body tell me what to do. (I've done almost no running in the last several weeks.) 

And so, we are re-routed from the (so-far failed) pregnancy quest to a more fundamental quest for my own health and energy.

In a serendipitous re-scheduling of appointments, I saw a different hematologist, to ask about my continuing fatigue and macrocytic anemia. This doctor really impressed me - and I do not say that often. Not only did he listen and talk with me for quite awhile, but he composes and plays custom songs for his cancer patients, as part of their treatment.

He thought, after considering my history and doing a quick assessment, that I should see a top fibromyalgia specialist he knew of. And then he personally called this specialist and helped me set up an appointment for the very next week.

So I went to L.A. to see Dr. R. Paul St. Amand. I'd read about him years before in my quest for info. about my cyclic fatigue, but at the time didn't consider fibromyalgia seriously, as I didn't have joint or muscle pain at the time, even though I was regularly doing triathlons.

Dr. St. Amand diagnosed me unequivocally with fibromyalgia (FMS). I fit Dr. St. Amand's "athlete with fibromyalgia" picture perfectly. He has had several thousand patients, and says that a small percentage are athletes like myself. Our problem is, we have high pain tolerance -- so we don't recognize there's a *real* problem until perhaps later. But, with a high fitness level and lots of extra mitochondria, we apparently can get better more quickly too.

My session with Dr. St. Amand was epic for me. Literally every detail of what he said rang true for me, and painted my whole family's story quite clearly. He believes (after many years of research) that FMS is genetic; men are usually carriers, and women show more symptoms. Its source is a genetic metabolic defect wherein the kidneys don't properly flush excess phosphates from the body. The phosphates get stored in the wrong components of cells, and pile up in the facsia (muscles and joints), causing stiffness and pain. First the whole body gets tired, as it overworks to correct this; and it succeeds temporarily. But it always gets bogged down again - hence the cyclic fatigue. Over time, the phosphate build-up increases. They draw calcium from the bones (b/c they need something positively charged to bind to) - which means osteolytis or osteoporosis, if the FMS is not treated.

Best of all, Dr. SA has a treatment...which has worked for himself, his associate, their kids, and thousands of his patients so far.

So about 2 1/2 weeks into a new naturopathic treatment protocol (which just didn't have me sold), I dropped everything and started Dr. SA's treatment. He found that pure guaifenesin corrects the defective kidney process, and over time reverses the symtpoms of FMS. The catch is you have to avoid all products containing salicylates (plant matter) - that's a lot of products. That includes gardening; you must wear protective gloves and clothing. You can eat fruits and vegetables in normal quantities; that's it. This involves a lot of label-reading and toiletry-checking. I've rehauled my whole routine (which, thankfully, wasn't too involved to begin with).

You start with a small dose, and increase until you feel worse. Lots worse. Some people feel worse for a few weeks; others for a few months. But then you start to feel better. Your fatigue cycles start going back in the other direction - a little more energy each time, until you finally reach remission, where you feel "normal."

Week 1, I noticed a feeling of increased relaxation, with better sleep. I also lost some of that puffy, continual water-retention thing I've had for a few months. (Dr. SA believes that you retain extra fluids as the phosphate level gets especially excessive.) Week 2, I feel noticeably worse - more fatigue, more weird muscle pain, etc. (insert long list of weird symptoms here). This is the epic part, though: If this thing works, I could live my life without the nagging fatigue I've dealt with for 15 years. It's hard for me to envision, actually, not feeling tired all the time...just popping out of bed again? Choosing what I want to do and when? As far as I'm concerned, true, core energy is the most precious commodity, and I want it back!

...Or maybe it was always thick, just obscured by too many variables. Suddenly I'm in 2011, having thought I'd kicked the chronic fatigue years ago for the most part, but facing a new, particularly demonic form of it! It's the same as always, cyclic energy "crashes," only since my 8th miscarriage in January the crash time is greater than the up time, and I don't seem to bounce back up to sea level in between.

The first time I got pregnant, it happened so easily and I was able to do so much normal stuff that I was surprised. I'd long feared that my history with fatigue, psoriasis and GI issues might preclude any possibility of pregnancy. Wow, something was coming easily to me, a new and unfamiliar gift!

Two years and those 8 miscarriages later, I'm afraid again. We know I can get pregnant, and everyone loves to say that that's the toughest battle...  In a recent infertility support group meeting, another member commented that she felt envious of people who'd had miscarriages -- because she could never even get pregnant. I really felt for her. After each of my losses though, I've felt like there was no "greener grass"; miscarriage or infertility, it all amounts to no baby. Each one comes with its own agonies.

So I'm wondering if my body, genetically or whatever, is perhaps not suited for pregnancy. It tries really hard, and it seems to know what to do; that plus my burning, inescapable desire for our child keeps me hopeful. I'm in a lull, an intermediary quest where I seek the root causes of my fatigue.

...And what about my beautiful sister? Her strong body is slowly breaking down as she sinks further into a mire of life stresses... Will she ultimately be able to connect with a partner and create some kind of family of her own? I long for this for her.

I know some things already:

• I have macrocytic anemia (enlarged red blood cells), but it's mysterious because no doctor has yet been able to identify the reason or the treatment;
• My progesterone level, neurotransmitter levels, blood pressure, body temperatures, an overall energy have been very low. Body temps are up a little in the last month, with acupuncture and more rest;
• Iron, B vitamins, homocysteine, etc. levels all look OK in blood tests;
• Fertility- and anatomy-wise, Greg and I both look great, despite our ages.

Next week I see one of two hematologists - this might reveal more about the anemia. Greg and I also get genetic testing, to see if we have realistic hopes of becoming genetic parents. Somehow I suspect this isn't the problem - but then, things are rarely as you expect them to be. And, I'll consult with another expert in digestive and hormonal health. (...Not that I haven't explored digestion before, at great length and with many western and holistic health practitioners; it's just that no-one has identified and treated the root problem there either.)

Maybe I could have a big transfusion - of healthy red blood, even a fecal transplant (have you heard of that?? They do it in Australia for patients in need!), maybe a little extra oxygen to top it all off. My external body seems healthy and strong; why not just do a "refresh" of the internal stuff? I know it's not that simple, and that's the catch.

So I sit in my little boat, navigating dark waters through which I can't see the bottom, and there's no sight of land or destination just yet. Will we be able to have babies? Will I even get healthy enough again to adopt babies if not? I feel intuitively that it's possible for me to be balanced and healthy. It's just not simple or easy to get there, given the tunnel-visioned and profit-centric nature of our healthcare system; and I see a lot more work for me on the road ahead.

Greg and I met with Dr. Biter today (the first OB-GYN, who performed the IUIs). We wanted him to know we felt led-astray, and wanted to understand better why he'd gone that route.

The conversation actually ended up surprising me in some ways; I actually do understand why he recommended IUIs after my sixth miscarriage. Had my head been clearer of desperate, baby-loss hormones at the time, I probably would've decided to hold off on that until I'd learned more for myself about IUIs, IVF, and other possible tests that could (or might not) help to explain recurrent miscarriage.

Two things surprised me:

1) Dr. Biter HAD done, if not a thorough "miscarriage/fertility" panel, a few more tests than I was aware of. Apparently something got lost in translation between Dr. Biter and Dr. Ketter - Dr. Kettel seemed not to have received all of the results I'd asked Dr. Biter's staff to fax to him.

2) Dr. Biter's actual outlook at the time of the IUIs was probably less positive/hopeful than he let on. I think he knew well that an IUI may not fix our problem - but because we were still wanting strongly to try for a baby, he presented it as the best option. I do believe he's genuinely sympathetic and caring; but Greg and I felt at times that he said things *too* gently.

After today's conversation with Dr. Biter, and my visits to various other practitioners so far, I'm a little closer to realizing that our chances may be slim to none. I don't mean to sound negative, just more realistic. The fact is, no-one knows why I keep miscarrying for sure, and no-one would know why if I did have a successful pregnancy, either. Everyone is just making best guesses, performing trial-and-error, etc.

I am not ready just yet to give up the quest, or accept that Greg and I absolutely can't have a baby together. It might take a few more knocks on the head for me to get there - not sure. But the notion is there, that the day could come when that's our reality, and we have to deal with it one way or another.

There's a hardcore Buddhist tenet that says that hope is futile, and/or that hope only enables disappointment. Now, I still hope our reality doesn't come to that. Hope, hope, hope - there, I said it.

Having dealt with psoriasis, plus hormone and fatigue issues over time, I've long known that doctors aren't necessarily going to a) listen and observe adequately; b) conduct thorough testing by default; c) properly diagnose and/or treat your problem. I tend to view doctors as expert reference material, jumping-off points to greater self-discovery and health. Can't live with 'em, can't live without 'em!

Though I've had several really positive experiences with health practitioners, I've had far more that were misleading, unsatisfying, or downright upsetting.

For example, our fertility process:

Last fall (2010), I had my sixth miscarriage in a row. Clearly, something was off-balance, and we hadn't found it yet. Testing so far showed perfect anatomy, overall health, etc. Dr. Biter supposedly did a hormone panel to measure my levels, but later we discovered through another doctor that the test was meaningless and unreadable.

The day after a miscarriage (when I was once again heartbroken, amped up on the hormone rollercoaster of early pregnancy, and dying to have a successful pregnancy) Dr. Biter sold us on an IUI - where they pump up ovulation with hormones, and then isolate active sperm and inject them directly into the uterus. This is a fairly common procedure used to increase chances of getting a woman pregnant. Greg was skeptical; why would we do this, if we were having no trouble getting pregnant? We needed to look at why I was miscarrying!

I was a bit skeptical too, but Dr. Biter explained it such that it sounded like a good idea: We'd bypass any potential sperm count issues (he suspected that might be a problem), and increase chances of fertilization with some extra eggs. In my hormone-crazed haze, and desperately missing the baby I'd just lost, I said, Where do I sign up?

Two IUIs, two more miscarriages, and four months later, I was still heartbroken and frustrated, and on top of it, WIPED OUT. My energy wasn't bouncing back; it wasn't even crawling back. By late February, I had to cut back on work. Maybe focused resting would help me recover.

Meanwhile, we had sought out Dr. Kettel, a reknowned fertility specialist. We liked his approach right away. He addressed "Why the repeated miscarriages?", explaining his reasoning clearly. I had a pint of blood drawn, and we tested a bunch more things - 9 things that Dr. Biter had never even mentioned.

...And we realized, Dr. Biter should've referred us to a specialist, NOT sold us on IUIs. He did refer Greg to a male fertility specialist, who poked and prodded Greg and found nothing wrong. But...we were conceiving. A sperm count issue would mean difficulty conceiving, not gestating.

Lo and behold, Dr. Kettel's tests turned up...nothing. He recommended that we either try again with some extra progesterone (to build up the uterus) and baby aspirin (just in case there was a blood-clotting issue, event though those tests were negative); or drop $20K on IVF wtih PGD (genetic testing of the embryo).

$20K? And what if I miscarried again? No guarantees, no money back - sorry.

I didn't buy it.

While my brain was foggy from exhaustion, the baby-crazed hormone effect was clearing, and I began to think, reflect, meditate, listen to myself more. I sat for periods of time and just felt what I was feeling. I slept, a lot. I researched. I talked to people. I found support groups. I wrote. I noticed that my basal body temperatures remained low, off-the-charts low. My blood pressure was so low I almost passed out every time I stood up. My intuition insisted that the fatigue and miscarriages were for a reason. I would find it. The more I read and listened and thought about my whole health history, the more I thought low progesterone could play a role. That can cause miscarriage, exhaustion, and several other unpleasant, PMS-like side effects. --Not to mention that I've lost the outer third of my eyebrows.

But Dr. Kettel apparently had not even tested my progesterone level, because "He didn't think that was the problem, and progesterone blood tests weren't very accurate anyway." OK, I would find someone who would.

Possibly, my miscarriages really were "unexplained," and if we tried enough times, we might hit the jackpot...or we could eventually turn to adoption. --But eight miscarriages in a row? Pregnancy at the drop of a hat? I at least wanted to test for everything, before I accepted this non-explanation.

The acupuncturist I was working with already agreed that low progesterone would explain a lot of my symptoms; and that the Follastim, Pregnyl, and high doses of Prometrium (hormones) from the IUIs could have caused a rebound-like hormone crash in my body.

I went to two female M.D.'s who specialized in women's hormones: Dr. Rubin and Dr. Marshall. Another pint of blood, another week of extreme-crash exhaustion. But Dr. Marshall also ordered a saliva test for more detailed hormone levels, and looked at balance throughout the endocrine system and brain neurotransmitters; plus for some rare genetic conditions.

Today I got the bulk of the results. I wasn't surprised to find that both doctor's tests showed VERY low progesterone levels. My progesterone could've been slightly low before, but since the IUIs it was well below sea level - not even on the chart. 

The surprising result was that I also have a combination of two genetic markers (MTHFR and C677T). Having one isn't a problem, but having both means you don't methylate and absorb folic acid properly. BIG PROBLEM with pregnancy! Folic acid enables a fetus to develop genetically correctly. Not enough can mean brain development problems; very little to none means unviable fetus => miscarriage.

(Incidentally, Dr. Marshall also found that I was too high on vitamin D, which could be related to my narrow-band UV light treatments for psoriasis...and that my blood pressure and cholesterol levels are actually TOO LOW. --And I've been eating almost-illegal amounts of salt and egg yolks already!)

Holy cow! So all I need to do is take the correct form and dosage of progesterone, and a prescription form of methylated folic acid?

As always, there are no guarantees in anything, but I have a new sense of excitement, having some solid data and something new and simple to try.

...And Greg and I are deeply disturbed about the wayward path Dr. Biter led us on (which led to more miscarriages and pain); and the fact that no-one even thought to test these things until I requested it and made it happen. (Needless to say, making anything happen is exponentially harder when you have the energy level of a rock.) Are we wrong to want our money back from the IUIs, or at least some kind of closure with Dr. Biter, where we let him know just how wayward and trying this path has been for us?

So I start the new supplements tomorrow. Maybe, just maybe, I'll start feeling better! Greg hopes so too... 

Never did I imagine at the time of my last fertility-related blog entry (D&C #2 in Feb.) that after that, I'd have 5 more miscarriages over the next 10 months. That makes 7 miscarriages - and today I must vent some of this out, becuase I'm headed straight for #8 within the week.

So far we have no answers re: why I get pregnant easily, but it doesn't stick. Greg and I feel it's worth some more tests, because we clearly can conceive. If there were no conception by now, I might feel differently.

A glance at events thus far:

April 2009: Went off birth control pills

June 2009: Feeling strangely hot, fatigued and nauseated while training for a summer triathlon season

July 2009: Found out I was pregnant! So excited!

August 2009: Week 9 ultrasound showed no heartbeat or growth. :(

8/20/09 D&C #1
2 weeks very tired, emotionally distraught (slightly less 2nd week). Pregnancy hormones/weight gain continued even after surgery; had to size up on clothes. The fact that I still appeared pregnant made things even harder.

Aug-Sept. 2009 : Recovery from D&C

9/18: PERIOD START - happy to see this b/c it meant a normal cycle had started again

(9/24/09: Little Turtle went to kitty heaven on his birthday, 9/24. Overwhelmed with sadness.)

10/14 - 10/16, def. feeling pregnant; HPT was a faint positive

10/18: Early miscarriage. Tissue discharge, very heavy bleeding.

12/15/09: Period start

1/13/10: Positive home preg test; confirmed w/lab test - Dr. Cap (dr. #1)

10-week ultrasound showed no heartbeat (again)

2/23/10: D&C #2 (Dr. Cap)
Fetal test showed triploidy > chromosomal abnormality

3/23/10: period start

3/30/10: hysteroscopy, Dr. Biter (dr. #2, expert in fibroids and uterine tissue)

4/19/10: Myomectomy (fibroid/polyp/scar tissue surgery, Dr. B. - result of hysteroscopy)
TOUGH recovery; this surgery wiped me out completely for a week, then partially for awhile longer

---6 months on own, after fibroid removal---
Miscarriages # 3 and 4 (4-5 wks)

10/4/10: Period start

10/6/10: Consult w/Dr. Biter
Sperm test #1 showed low "viable" sperm count, 6%
My hormone panels and blood tests are all normal, "perfect"

10/8/10: Start IUI cycle #1; Follastim day 1 (5d)

10/19/10: IUI #1 (chemical pregnancy, 4 wks)

10/31/10: Period start (light spotting; unsure - Dr. B visit next day to verify)

11/1/10: Dr. Biter visit; spotting had started, but also had preg symptoms. Lab test showed miscarriage (low HCG).
Miscarriage #5

11/12/10: Started acupuncture (G and D) and supplementation (G) w/Amy, Indigo Dragon

11/17/10 IUI #2 (chemical pregnancy, 5 1/2 wks)
Miscarriage #6

12/1/10: Dr. Biter visit, lab tests 12/1 and 12/3 - showed pregnancy; but HCG levels low (he didn't tell me at the time)

12/09/10: Miscarriage #7 (period start at 5 1/2 weeks; main miscarriage 12/10-11)
 lab tests confirmed chemical preg 12/10/10
 
12/11/10: Started first BBT chart

12/16: Consult with Dr. Bastuba, male fertility specialist (dr. #3)
He thought both IUI sperm counts looked fine; ordered more tests

12/25: nausea, cramps and tiredness again, though we tried half-heartedly to avoid another pregnancy

1/3...waiting for the other shoe to drop; feel it's another chemical pregnancy...

1/13/11: Have appointment at San Diego Fertility Clinic w/dr. Kettle (dr. #4). More testing is already in progress.

There's another catch here; I'm an athlete, and my work revolves around health and fitness. I've only been able to train a grand total of 6 weeks in the last 20 months - why? Because I'm trapped in First Trimester Groundhog Day! I've now spent MORE than 9 months actually being pregnant (and feeling correspondingly sick and fatigued), and being unable to work or work out at full capacity. I was happy to shelve my triathlon days to get and be pregnant, but that happiness has turned to sadness and frustration in moments of loss.

Over the holidays I hit a kind of emotional wall - or maybe I fell off a cliff. I hadn't had enough down time to properly grieve miscarriages #6 and 7, so the emotional sh** hit the fan, so to speak. I'll be fine in the end; I just need to process all of this. The holidays are a particularly difficult time for anyone still wanting a partner or a family; or who've lost family!

I just know that I'm not quite ready to move on to more alternative options - at least, not until we have more information in mid-January. This info. might only be a further lack of explicit causes or answers - but then at least we'd feel it was OK to try something different.

Honestly, we're really scared about how much it costs to do advanced IVF, find an egg donor or surrogate mother, or adopt a baby. IUI and sperm donation are a little more palatable financially. Of course the Evil Health Insurance Co. (Anthem, in this case) doesn't cover fertility alternatives even if you have been pregnant before. So if you're one of the lucky ones and pregnancy #1, 2 or even 3 works out, then you potentially save a lot of cash!

The thing is, I can't imagine not having a family with Greg. If we adopt from Mars, so be it; I will love that alien-baby! At the same time, once I was pregnant past 5 weeks, a bond was formed, and something in my primal brain clicked over, and it won't go back. It's very hard to imagine letting go of the idea of carrying a baby.

A few things I've learned or gained from these many months of hardship:

• New levels of communication and empathy with Greg
• Great clarity about wanting a family
• Clarity re: life priorities
• A heightened desire (longing) to train for sporting events again
• Umm, a lot of philosophizing about Zen and waiting and not-waiting for things to happen...leading back to the same starting point - still want a baby!
  

P.S. Many thanks to Lori for giving me Saltwater Buddha: A Surfer's Quest to Find Zen on the Sea. Riding my bike, reading and surfing seem to be the top Emotional Recovery Activities. Can we pleeeeaaase go to Costa Rica again?? The water is really cold, crowded, and polluted here!