Renewed Hope

Oct. 29, 2014

Back to Fibro doc today after four months. At my previous appointment, he seemed to be throwing up his hands - beyond testing and possible treatment for Lyme Disease and heavy metal testing/chelation, he had little else to offer me. I truly don't believe I have Lyme Disease, and I'm not willing to do antibiotic treatment even if I had Lyme; besides, Doc doesn't know of anyone in the area who treats Lyme anyway, so I see no point in testing. I'm not really on board for heavy metal testing and chelation the way Doc does it, either - I've read too much that says chelating agents don't have a strong enough bond to the metals to hold onto them all the way out of the system. The metals get pulled out of tissue, but when the bond breaks, a lot of metal ends up getting redistributed throughout the body, often in places it wasn't in before. Dentist says it's counterproductive to do chelation before all the mercury is out of my mouth, and since I don't feel good about doing chelation at this point anyway, I believe it's actually been a blessing that I haven't been able to chew without pain on the teeth that have had amalgams removed and/or crowns placed. Dentist says it can take up to a year for those teeth to calm down, which buys me some time before Doc begins pushing the chelation. I'm hoping that Tai Chi, diet and supplements together will improve my immune system enough that after the amalgams are completely gone it can handle any remaining metals without chelation therapy.

Doc began the appointment by asking me to tell him what's going on; he had a list of questions but wanted to hear from me first. I told him about starting Tai Chi in August and that it's been amazing; at the same time I began writing this gratitude journal, and hand-in-hand they have given me a new outlook. I told him why I started writing this - because of the epiphany that Freddie doesn't define me along with a personal need to write again - and related to him the positive effect: looking for blessings every day makes me aware that there really is much more to my life than Fibromyalgia, and that overall my life is very good. Not surprisingly, but still miraculous, I have felt better. He nodded knowingly. He told me at my last appointment, when I felt defeated and showed it, of a patient who just didn't respond to any treatments (one of those 10 percent, of which club I appeared to be a sad new member) and how she reported to him some time after he released her that she turned her life over to God. She accepted her condition and His will, and once she did that, she began to feel better. He urged me to do that, which I had tried many times to do. The gratitude journal - along with the meditative essence of Tai Chi - seemed to be the key to peace for me.

How grateful I am to have been led to a physician who recognizes that any medical intervention is only a complement to spirituality in promoting physical health. At every appointment, he has asked me, "Are you good with God?" or "How are you with God?" I am a spiritual person; my religion is my life. Yet somehow I could never find healing through prayer and faith alone; for whatever reason, I needed a physician to combine medical knowledge with spirituality, and perhaps now just happened to be the time for the two to come together. He told me today that he's not one to tell a patient he can fix this or that or to give false hope (yes, I saw that in my last two appointments!), but that he could tell me today he really believes I will get well. It won't be a revelation, "Hey! I'm healed!" but will be a gradual process. 

So, the technicalities of today's appointment: Doc says for me, the diagnosis "Fibromyalgia" really means mitochondrial dysfunction, as fatigue remains the primary, persistent issue. 

1. First, we need to address sleep, which was pretty good until our vacation approached and my mind raced with preparations. Then on vacation, sleeping in different beds with uncomfortable pillows, coupled with my propensity to overthink details of each day's adventures kept me half-awake every night. If I don't get back into better sleep in the next few weeks, he wants to consider a low-dose pharmacological combination to promote restorative sleep. A body cannot heal without restorative sleep!
2. He has learned even more about glutathione and methylation cycle since our last appointment, and he feels that I can triple my ALA dose to 600 mg twice a day. 
3. He ordered bloodwork to look at DHEA-S, Ferritin, and comprehensive metabolic panel to evaluate how the liver and kidney are functioning. He also wanted a specialized test for glutathione that had to be done in his office, so I did it while there today (three attempts by two nurses to find a vein ... aargh, the reason IV therapies are not a good option for me!) If glutathione is low, he will supplement, hopefully with liposomal cream, nasal spray or other non-intravenous carrier. 
4. Cortisol levels are OK - not great, but no longer at crashing level. I stopped taking cortisol about two months ago and went back on AdrenoChelate; I haven't noticed crashes, but Doc says the formula is weak and recommended Adrenal Stress-End by Integrative Therapeutics instead. 
5. No more Candida therapy! Even though Doc says this, I know too well how sugar and processed foods make me feel, so I will continue with a clean diet.
6. He gave me deep breathing exercises to do, which I did in the past, probably with Fibro Doc #1. Deep, abdominal breathing is inherent in Tai Chi, which I do at least once a day, but Doc's exercises are a good reminder. They're great because they can be done while driving (when I most need relaxation) or standing in line (the second-most common source of nervous stress) or at any time/place. I've actually had people in public places ask me if I'm OK when I start breathing deeply at the onset of stress. I'm sure I look like a head case about to pass out when I do that, but if people only knew how effective a few deep breaths is for centering and calming oneself!

And now it's time for bed, so I'll apply some progesterone cream and lavender oil, do my mind-calming Tai Chi memory exercises, and hope for pleasant dreams. I go to the retina specialist in the morning, though, so my mind will likely be anticipating that all night. For heaven's sake!

Doctor, My Eyes Have Seen ...

Sept. 17, 2014

* Note: I wrote this entry and forgot to post it the same day, so it's out of sequence, but that's how Freddie works a lot of the time!

Trials can serve to show us what we really have, which came home to me with a rather spectacular light show in my left eye in January. I woke up the morning of Husby's surprise 60th birthday party ready to hit the road running. As soon as I got out of bed, I noticed dark spots in the line of vision in my left eye. I've had floaters before and they go away after about a day, so I thought I'd lie back down for a few minutes and see if they dissipated. They didn't, and I had a party to put together, so I went to the closet to get dressed. That's when I saw a display that looked like a confetti spray of silver glitter inside my eye. As pretty as it was, I knew it couldn't be good. I called my optometrist's office and they could get me in within the hour. Driving was a little scary. 

My optometrist did the requisite tests, then she wanted to dilate my eyes for a good look inside. I asked her if we could wait until Monday to do that because I couldn't spare the downtime today. With genuine compassion, she said, "I'm sorry - this trumps a birthday party, as important as that is." She said a display of bright lights can indicate a detached retina, and if the retina was involved, it needed to be addressed immediately. Her exam indicated the retina was not detached, but she saw blood pooled at the back of the eye and scheduled an appointment with a retina specialist in the afternoon. I was so put out.

The retina doc dilated my eyes again, took probably 100 pictures of the inside of both eyes, and infused dye in my arm to see where in the eye the blockage was. That one appointment pretty much covered all the things I hate: needles, having my eyes dilated, and seemingly endless bright flashes directly into my eyes. The verdict, after all of this, was that a small piece of cholesterol blocked blood flow in the main vein off the optic nerve, causing an aneurysm. In the films, I could clearly see the blockage and an area surrounding it that was light yellow. The doctor said the light area was where the pooled blood destroyed nerves in the retina, and the dark spots I was seeing in my line of vision were the areas of the retina where no information was being transmitted to the brain. He said I essentially had a stroke in my eye, that nothing could be done but to wait and watch for symptoms to improve or worsen. His only recommendation was to get in to my primary-care doc ASAP for tests to determine if there were any more blockages floating around in my neck or heart. Oh great! He told me all this as nonchalantly as if I should go home and take some aspirin for a headache. I spent the whole weekend terrified that I would have a stroke before Monday and wake up to live my mother's nightmare of incapacitation.

Well, here's the point of this story and why it's my object of Gratitude for today. The last month or so I've had to work harder to see, so I visited the optometrist today for a prescription adjustment. How amazing is it that eight months after I sat in her office facing possible vision loss, today my eye is healthy, save some small blind spots on the retina?!? I saw a lot of the retina doc in the months following my "cardiovascular event," but by the third visit, the eyesight in my left eye had improved to almost 20/20. It took a few months, but the swelling went completely down, the pooled blood was absorbed, and the area turned pink and healthy again. The affected nerves are dead and don't regenerate, but instead of seeing dark opaque spots, now it's like looking through water spots on a lens. 

BUT - I can see! I haven't taken that for granted for one moment since the incident. I didn't lose my precious sight and I didn't have a stroke or heart attack - in fact, my echocardiogram and doppler neck scan were completely clear. My farsightedness means my perfect vision has deteriorated more over the last few years than that of nearsighted people, so it takes more and more effort to see anything anymore. Now with the blind spots, I have to work even harder, but my brother-in-law, who did have a detached retina several years ago and lost the sight in that eye, is now going blind from glaucoma in the other eye. I feel so much more empathy for him now, and I appreciate how difficult and dark life would be without sight. Despite this little trial, I'm so very grateful that I can still see my grandbabies and how they grow and change, the hummingbirds in my back yard, the beautiful world, and that I can drive. And I know that if I were blind I would somehow have to find blessings in my life, because finding things to be grateful for is what keeps faith and hope alive.

Another blessing in all of this: I first started seeing Fibro Doc #3 two weeks before the eye stroke. I checked with both him and my PCP about what tests they thought we should run. Fibro Doc requested a Homocysteine test, in addition to the cholesterol test, echocardiogram and doppler neck scan my PCP wanted. Fibro Doc knew what "mainstream" docs don't know or won't acknowledge: that elevated homocysteine levels are highly associated with stroke (a flaw in the methylation cycle, which also correlates with autism, ADHD, and ding-ding-ding - fibromyalgia and chronic fatigue. See my post, "I Can Do Hard Things" for more info.) My Homocysteine was high, but after taking B-12 injections, SAMe and 5-MTHF for a few months, it dropped to well within normal range. My family doc wanted me to start a statin drug even though my cholesterol numbers were within normal range because "once you've had a cardiovascular event, you need to be on them, period." But removing cholesterol from the blood doesn't address why extra cholesterol is there anyway, which is because it's trying to protect the lining of the veins from inflammation. And statins have known side effects, including a link to Alzheimer's. When I asked the family doc about antioxidants and anti-inflammatory diet, he said there's no evidence that they have any real benefit. Well why would you make dietary changes when you can take a pill every day to make the numbers look good? 

I feel like the eye stroke was God's finger giving me a firm tap on the shoulder - too serious to ignore, serious enough to alert me and my new doctor to something that could be addressed before it became deadly, but not so serious that it sidelined me. Spending the morning at the optometrist and the whole afternoon at the retina specialist nearly derailed Husby's surprise birthday party, but God even took care of that. With a few adjustments, it happened as planned and we got to celebrate Husby's milestone along the timeline of his great life with family and dear friends after all. It's all good!

I Can Do Hard Things

Sept. 7, 2014

Last night while talking about Grandson #1's quirks and challenges, Daughter expressed her frustration at his high intellect but utter laziness. He'll try something and then stop in frustration, saying, "I can't; it's hard." Daughter isn't having any of that; her response is,"You can do hard things!" 

He's blessed to have a mother who makes that a mantra. It struck me when my daughter uttered that mantra last night that no one ever said to me, "You can do hard things." No one really needed to because I've always driven myself. I try a lot of things, but I've never broken through to expert status in any pursuit because I give up when the going gets tough and move on to something new (easier because you start at beginner level each time). Piano, writing, photography, sewing - all intermediate-level hobbies. I work hard, climbing and climbing, but when the air gets thin, I decide hiking isn't for me and I never quite experience the euphoria of reaching the summit. I ask myself, is it because my brain can't sort information when I get to the level that requires more processing? Or is it that I don't have the physical and mental energy to persist at the more complicated levels?

Now this epiphany startles me because I'm a perfectionist, and perfectionists generally aren't quitters - are they? I do recognize that I also abhor losing, and if I can't be as good as the best (perfect), then I just won't play any more. True competitors - and winners, eventually - enjoy the competition, which spurs them on to beat their opponent (or obstacle). What I do is get all tied up in knots about doing whatever I'm doing in the best, most perfect way possible, and I literally wear myself out. Epiphanhy! There's a subtle but significant difference between competitors and perfectionists; methinks competitors drew the healthier straw on this one.

As I watch Grandson running in circles, talking incessantly, analyzing and figuring out things well beyond his age level, it's sometimes like looking in a mirror. I don't have the outward appearance of energy that he exhibits, obviously, but I suspect the excessive brain firing that makes him Perpetual Motion causes my brain fog and fatigue. Huh? Well, although no one has ever described me as energetic much less hyper, I share with him social awkwardness, I was intellectually ahead of my peers in early elementary school, and then there's that gnawing element of giving up when something poses a challenge. And I've had a lot of years for that excessive firing to wear out my body systems and make me foggy and fatigued. My son has many of the same attributes, but there wasn't as much information readily available to parents about ADD/ADHD 30+ years ago, and I admit I wasn't as on top of parenting as Daughter is. 

I'm not crazy in my linking spectrum disorders to chronic ailments like fibro and chronic fatigue. While researching methylation (Fibro Doc #3 believes faulty methylation caused high homocysteine levels, which likely contributed to the stroke in my eye earlier this year), I ran across the work of Dr. Amy Yasko, who believes that most of the complicated, chronic illnesses and disorders that seem to be on the rise today stem from a flaw in a major biochemical pathway called the Methylation Cycle. We're talking Parkinson's, Fibromyalgia, Chronic Fatigue Syndrome, IBS, Chron's Disease and Autism, to name a few seemingly unrelated conditions. She says:

A combination of genetic weaknesses, metal toxicities, infections, and other factors can lead to a negative cascade of neurological events.

Yasko also says that if a child has Autism or other spectrum disorders, he or she likely has a mother or close relative with that or other conditions mentioned above, implying that these are genetically inherited disorders. Autism has been accepted as an inherited condition for some time, but Yasko claims that a whole array of ailments are related and have in common digestive problems. She further claims that when supplements are given to "make up" for deficiencies in the genetic pathway, the symptoms clear, whether it's Autism or one of the other named conditions. Yasko's skeptics call her a quack, but it appears that prestigious institutions like Duke University are pursing research along her line of thought. A collaborative study conducted by 13 institutions around the world published just last month identifies the CHD8 gene mutation responsible for Autism. Interestingly, the study also found that the defective gene causes "issues with sleep disturbance and gastrointestinal problems."

But if Autism and other disorders are genetic, what is making the mutation present itself so abundantly now? Why are we now seeing so many hyper, uncontrollable children? Why are so many people complaining of severe digestive problems, debilitating fatigue and unexplainable widespread pain? Industrialization is likely the blanket "other factors" Yasko mentions above. A big emphatic disclaimer here: I am not a tree-hugging-save-Mother-Earth environmentalist in any form or fashion! I'm the daughter of Depression-era parents who saved and conserved and cared for everything in their possession, so I'm not a wasteful consumer, but I do firmly believe that the earth was created to sustain humans (who are indeed obligated to be good stewards) and that the earth also evolves to do that. However, I acknowledge that an ever-increasing number of cars on the road spew ever more toxins into the air; that more people means more sewage, including chemicals from drugs that we take to combat the effects of a sedentary lifestyle and a processed-food, hormone- and antibiotic-laden diet; and that technology and labor-saving devices have actually served to complicate our lives by deluding us into thinking that we can cram more and more into 24 hours. 

Now, Yasko has a whole complicated and expensive protocol of gene testing and nutritional supplementation based on where in the genetic chain the defect lies. My doctor, who obviously doesn't follow Yakso's protocol, clearly does buy into the methylation theory and is having me take three supplements (which are among those Yasko recommends) to lower my homocysteine - and my level dropped to a healthy range within four months of starting the supplements (Vitamin B-12 injections, SAMe, 5-MTHF). Critics of integrative medicine say the homocysteine link to heart disease and stroke is unfounded, but my gut tells me they're wrong - just like they're wrong about using statins to lower cholesterol. (Another post for another day!)

Whether or not gene testing and targeted supplementation is the key to beating today's chronic ailments I don't know. I do know that what I suffer is very real, that Grandson's behaviors are not blown out of proportion by his weary mother, and I do believe there is a  genetic link between the two. It makes sense to me that in certain people, a genetically flawed methylation pathway combined with environmental toxins can lead to unexplainable conditions. Well, only unexplainable to "mainstream" medical folks who don't have the guts or drive or whatever to break out of their medical-school mindset and find some meaningful answers of their own. End of soapbox. For today. What I do wonder, though, is if a genetic mutation is a factor in someone's inability to stick with difficult tasks, does it make a meaningful difference if someone tells us we can do hard things? For sure, it makes a difference that Someone believes in us and encourages instead of condemning us :-)

Today's smile: Husby. 

He's my smile every day because he's constant, steady, completely honest, loyal, hardworking, generous, and good. (Handsome, too, no?) And he unfalteringly and uncomplainingly  stands by, helps, and loves a woman who is grouchy, temperamental and unable to get out and do things a lot of the time. He didn't do anything special today that he doesn't do every day to make me smile, but it's a good day to acknowledge my gratitude for this wonderful man who makes the bed every morning and turns it down for me at night - seriously! - and who my Heavenly Father put right in my path before I thought I was ready to be married, but who is the best thing that ever happened to me. 

Energy and calm

Aug. 2, 2014

Before pain and fatigue sidelined me, I was a writer and photographer. The brain fog took away words and my ability to organize and stay on task. The fatigue and pain stole the ability to accomplish physical and mental tasks, and feelings of self worth vanished. Consequently, I alternated between feeling hopeful and defeated.

I went back to college in my late 30s, before the onset of my health problems, although I believe it all really started there with the stress of my own unrealistic expectation to be the best at everything I did. A dear professor and mentor literally wouldn’t let me quit my journalism degree when the going got tough. Several years after graduation, when my health declined until I had to quit writing altogether, she reminded me that nothing is lost on a writer: “Why don’t you write about your experience?”

I tried once. Or twice. It was just too hard, trying to sort through why and how I got to be this way, and trying to chronicle all the doctors I’ve seen and treatments I’ve tried. Worst of all, trying to find words was an exercise in frustration that reminded me all too painfully of what I had lost.

I’m on my third fibro doctor, I’ve completed six months of an impossibly restrictive diet, I take handfuls of supplements three to five times a day, and I avoid toxins and chemicals, including fluoride and artificial sweeteners. I’ve explored Candidiasis, heavy metal toxicity, Lyme Disease, CNS malfunction and psychological factors. Today I am back to the first thing I read as I began trying to learn about fibromyalgia: that almost all of us sufferers are perfectionists who push ourselves to the limit and who stress or worry about nearly everything. To remedy that, I’ve tried Emotional Freedom Technique (tapping the body’s meridian points), acupressure, acupuncture, yoga, and meditation, although I’ve never mastered meditation on my own. In my gut I’ve always known that to get better, I would have to figure out how to calm my mind, relax my body and get over having to be perfect, but I’ve not realized success with any of these.

Monday I found Tai Chi. I’ve heard repeatedly that Tai Chi is one of the best things for Fibro. During the first class, it was perfectly clear why. It is meditation. You can’t think about anything else but doing the movements, which are fluid, graceful and ultimately relaxing. They are so slow they deceivingly require muscle control and strength, and when done with correct form, provide gentle but powerful stretching.

This week I’ve had energy that I haven’t felt in years. It could be attributed to a number of new things I started since we got home from vacation two weeks ago:

·      I began taking DHEA 10 mg (lab tests done before vacation showed I was low)

·      I began drinking 10-20 oz. of alkalized water a day (via Juuva’s Energy Cup)

·      To reduce electromagnetic field exposure, I stopped talking with my cell or cordless phone to my head; unplugged all electrical gadgets in my bedroom while I sleep and when not in use; and don’t use my laptop on my lap.

·      A "cold" front dropped temps all week to the 70s and 80s (heat wilts me!)

·      I spent time with a friend who inspired me to be constantly aware of negative thoughts and replace them with happy, lighter ones. This goes hand-in-hand with a book I started reading before vacation, Feeling Good: The New Mood Therapy by David D., Burns, M.D. in which the author cites studies showing that positive thoughts literally change brain chemistry.

Today’s smile(s) came first thing in the morning as husby and I were walking in the neighborhood. Coming toward us was a woman totally unaware that anyone else was out and about, humming out loud – no earphones, just her own song. A few moments later, someone behind us called out a greeting. Most times when we walk, it’s hard to get anyone we encounter to even nod hello, even when we’re close enough to brush their arm. As he passed us, we saw that he was riding a bike and pulling a baby in a bike trailer, and he called, “Rides just $5!” I’m thankful for God’s little smile early this morning in not one, but two manifestations!

And this week, I’m thankful for energy and a mind clear enough to write. It feels good, and it seems right to start a gratitude diary. If next week turns bad again, I’ll have this week to remember until another good day comes!