the beach! and yoga revelation

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At the end of August we headed to the beach!

We were really lucky because F has family who own a beach house, and as it wasn’t being rented for a few days they generously offered it to us to stay in.

So we packed up the car and hit the road.

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Our kids had been to the beach once or twice when they were too little to remember the experience, and too tender to spend any time in the sand and sun.  But this time…we had a blast!

The house was close enough to walk to the beach each morning (and afternoon and evening)

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enough with this walking, mama…let’s GO!

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I managed to capture the look on S’s face when he saw the ocean

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I’m pretty sure Laila didn’t stop to gaze at the ocean.  She was feeling it’s pull in her entire being and knew she’d love it.  Why stop to gaze?

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There is something so blissful about being in an endlessly beautiful place where everything is an experience for your senses.  I found myself completely letting go of any agenda, and just enjoying my family and the sounds and smells and feel of the beach.

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My little ones were instantly happy and completely engrossed.

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The water was cold and fizzy, and Sufyan expanded his view of the ocean to include SUPER FUN.  It used to make him the teensiest bit nervous, but he conquered that nervousness this trip.

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And Laila had to be reigned in or she would have been swimming out to see boats, dolphins, and the mermaids she was sure were there.

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And then there was the “alone time” we planned for S and L.  This is the time when they get a parent by themselves for some one on one time.  I took S to the boardwalk and the only thing on his mind from the moment we parked our car was sugar.  He wanted a treat.  Now, I have nothing against a treat.  But I do have to help narrow down the elaborate sugar-filled plans my kids dream up at treat time.  So S had a choice:  ice cream or a piece of candy.  Not both.  And in order to pick we went to see a candy store.  Here he is deep in thought about his choices:

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I confess I was hoping he would choose the ice cream, especially after seeing the stale piles of beach boardwalk bulk candy at the store.

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It was depressing, actually, seeing the stacks of Hello Kittys and ancient gummy worms, the faded looking sweet tarts.  And the smell:  sugar and air conditioning.  We were the only customers and the young adult behind the counter barely looked up from her texting.  At any rate, S had a choice and he chose….

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In the evenings and at rest time the beach house was stocked with games and crayons enough to keep everyone busy.

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THANK YOU so much to our family who made this possible.  My kids ask me all the time when we can go back!  We needed this.

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Yoga, Mama?

As I was practicing yesterday morning, I had a little a-ha moment.  It was this:

I am whole. (*deep breath*)

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(image from this site)

It had been a while since my last practice because I have been focusing on using my elliptical machine and a seated pranayama practice.  My health challenges had led me to need some more vigorous exercise and I hadn’t yet found a way to do yoga asana, pranayama, meditation AND elliptical.  More on the elliptical later.  So anyway, there I was practicing yoga when all of a sudden a little veil dropped.

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I have been so focused on the kids’ needs (using my heart and brain to parent), and my newest health challenges (using my energy and time to research, get to doctor appointments, and mentally noting all the various ways my symptoms of breathing challenges are occurring) and growing as a part of my yoga studio (using my body to teach, using my time to connect to my fellow teachers) that I had started to feel like a bunch of compartments.  This one for mom, this one for teacher, this one for patient, this one for partner, this one for running the house…

I had become a divided person in my quest to do all I feel I need to do.  But what is really important?  Love.  Becoming more and more centered in my highest self.  Keeping the inner gaze focused even if the laundry piles up and the doctors need to see me and I am feeling the body as limited.

Moving with the breath, the breath moving me, the breath quieting my mind, the asana opening pranic channels, the mantra tuning my heart to my highest values and suddenly I was whole again.  It was nothing short of amazing.  A revelatory kind of amazing.

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*remember to breathe, mama*

Health update and Gratitude

(Currently I am sitting in the lobby of a pulmonary unit in a hospital, waiting to experience a “methacholine” challenge.  I am looking forward to getting out of this waiting room, because like all medical waiting rooms it has a TV blaring in the corner.  And as usual, what has been chosen to blare at patients is news.  Anxiety provoking, rapid talking, flashing pictures of disasters and human pain over and over.  The drama filled news for all of us sitting as we wait for procedures that we don’t want, for conditions that we are anxious about, that leave results hanging in the air for days if not weeks.  I wish we’d rethink the whole TV thing.  Why not give us pens and paper?  Glue and markers? Books?  Crosswords and puzzles?  Anything but TV. )

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breathing test booth.  the test took 1.5 hours. 

Health Update:  (at the conclusion of the above mentioned breathing test, I was diagnosed with a reactive airway disease.  I have no other info yet.  It could be asthma, eosiniphilic bronchitis, COPD…it will be a while before I know.  Likely it stems from EoE).
The bone scan was normal.  The agglutination test to visualize actual Brucellosis bacteria in my blood was clear.  Blood work to test for latent TB, thyroid problems, and other markers for disease was normal.  Dr. Clear, who ordered these tests, felt that much of my symptoms were toxicity from the antibiotics, and thus he took me off of all antibiotics at the end of August.  Dr. Clear doesn’t expect that we will see each other again any time soon.   He said, “I think you’re doing well enough that I don’t need to see you again.”   The most welcome sentence I have heard all year.
Brucellosis:  I want to share this with my friends in the West Bank where Brucellosis is much more common than here in the states.  I have a friend there who is an expat.  He tested himself for Brucellosis because of my story and because he had some strange symptoms.  The clerk told him that Brucellosis is very common in his area.  By my friend’s own account, he has eaten PLENTY of the unpasteurized cheese that I ate, so he had cause for concern.  Thankfully his test was negative, too.  So perhaps caution is wise here, but panic is unnecessary.
EoE:
I still have EoE, but it seems to be in remission.  I am eating well on a very restricted diet.   I have added in 2 seed-like grains which keep me from feeling bored with my food:  amaranth and quinoa.

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I have cut out most nut butter, but not nuts entirely.  This is mostly to reduce the load on my liver as the liver has to process all the fat from nut butter.  I am on a gut healing protocol given to me by an MD which includes anti-inflammatory capsules (herbal) and a strong probiotic.  I have added in a good amount of fermented foods and am soon beginning to make my own.  I have cut back on caffeine and sugar, although sugar is one thing I am still working on (hard to let go of raw honey and bananas).  I HATE stevia, so that’s a non-starter.  I use cashews, cinnamon and coconut to get my sweet cravings met through food.  But I still eat raw honey.
Chronic cough:   I have been coughing for nearly a year.  EoE patients often have asthma, and vice versa.   Pulmonary and esophageal diseases often interact with each other, or one leads to the other.  As I mentioned above, I was diagnosed with reactive airway disease yesterday morning.
Body Pain:  I hurt all the time in my ribs, and very often in my legs.  Lyme maybe the culprit here.  But somehow it feels more manageable than it used to.  Maybe the fact that I am exercising again is helping (elliptical added to my yoga).  Exercise and yoga asana and pranayama make the pain almost go away.
Lyme:  This one is hard for me to write about.  As you know, current Lyme tests are antibody tests.  They can tell you if you’ve been exposed to the spirochete bacteria that causes Lyme, but not if you have an active case of Lyme Disease.  You can tell if your body is in an IgM response stage or an IgG response stage, but again not if there is active disease.   I had an IgM response, so my body was mounting a defense against Lyme when I began antibiotic treatment.  There are also other things that routine tests miss, such as the plethora of other tick borne infections that cause illness.  Lyme disease remains the only tick borne disease commonly tested for.  You often have to find a LLMD to go further and test for variants of the Borrelia spirochete and the many “co-infections”.  VERY costly.
Also,  there is a lot of misinformation among…everyone.  I hear about people all the time who are denied a Lyme test if they don’t have the classic bullseye rash (I never had that, and I have Lyme).  They are told they probably don’t have to worry if they don’t see the rash.  In my case, the real problem was that you cannot tell by my serology whether or not I have active Lyme disease or/and how long ago I was exposed.  Also, my positive test was equivocal, and some doctors have questioned whether I have some other thing going on in my blood that could cause a false positive.
This is why many doctors treat Lyme clinically.  That means treating on basis of current symptoms rather than serology alone.  I used to think this would be a very foggy way to go, but now I think it’s the only smart way to treat.  Here’s why:
My story is that in the midst of all the EoE suffering, I got bitten by a tick.  That tick tested positive for Lyme (I brought it in in a baggy and they sent it off to a lab) which means it could have transmitted the spirochete to me.  So that is a reason to treat, in my opinion (though not in everyone’s opinion.  Many would wait until symptoms appear, but in my case I was already so ill all the time I decided not to wait).  But I also asked for a Western Blot at the same time (just day or so after I was bitten by this tick so too early for it to be relevant to this bite) because I wanted to know if I had an existing Lyme infection that could have been a player in the sudden illness with EoE.  The infection I was testing for would have been decades old, since the last time I was bitten by a tick that I remember was easily 18 years ago and I spent the ensuing years in Texas where my outdoor exposure was limited due to the heat and it’s not a huge den of Lyme disease there anyway.  The Western Blot was positive.  So I have Lyme, right?  Maybe.  Probably…but not certainly.  At the time I thought I was certainly suffering from Lyme disease, as Lyme disease can contribute all kinds of gut symptoms and that was the locus of my distress.  But there is reason to doubt.
First, my symptoms were consistent with EoE, not typical Lyme.  I was not clinically presenting with Lyme.  Second, my Western Blot was not unequivocal.  It was positive, but at least one of the bands was not typical of a sure-thing Lyme infection (there is an art to reading tests like the Western Blot).  Third, there are cross reactions and false positives with Western Blot tests and, at the time, my serology was looking strange:  WBC was consistently low for example.  And talk about false positives.  I tested positive for twice for Brucellosis and was even being treated for it when the third test finally ruled it out!  So yes, false positives happen in antibody testing.  So I began antibiotics for the Lyme.  I felt better at first.  I thought I was treating correctly because I felt better.  But then I started to slide downhill as we began rotation of antibiotics and as weeks went by.   It turns out that antibiotics can create a feeling of getting better at first because they can initially act to suppress inflammation and then later that effect diminishes and the patient feels worse either due to the disease or the toxicity from the drugs or both.  But I didn’t know that, and I thought that as I “got worse” it was due to Lyme.  So I did 3.5 months of antibiotic therapy, not getting better, before getting exhausted and toxic.
Finally, the Lyme infection I might have is potentially 2 decades old.  Since I am not clinically presenting Lyme symptoms, I probably don’t have active Lyme and maybe I never did, at least in my recent memory.  I do remember a period of less than wonderful health in my early 20s around my first tick bites, but then again I was a waitress in a big city working crazy hours to pay rent and dealing with some other trauma in my life.  In this light, one could say I got the wrong treatment.  Which totally sucks both in terms of how much it hurt me physically, mentally, emotionally and how much money it cost us.  My doctor was VERY expensive and didn’t take insurance and this basically wiped us out.  And the drugs left me with a terrifyingly real case of candidiasis.  Which is kind of terrible and is completely due to antibiotics.
But here’s another way to see this, and this is the way I see it.  There are no mistakes.  Only opportunities to grow and learn.  The antibiotics may have helped treat the Lyme I may have been exposed to in the recent tick bite or in the past tick bites.  With the mega-doses of abx, maybe I hammered those spirochetes.  Plus all the testing my LLMD did resulted in me knowing that I have a particular genetic mutation that inhibits a detoxification process in my body which is an important thing to know (this is the MTHFR gene and it is important in methylation).  AND, and this is important to me, what if a decades old Lyme infection actually is a culprit in my current EoE situation?  I can’t say that there is anything that has convinced me to rule that out.  My doctors don’t think so, but I really believe it’s connected.  No, I KNOW it’s connected.  Lyme is a nasty little bug that attacks all your body systems.  Your brain, your organs, your joints and bones.  It has staying power, hiding skills, and lurks in the body everywhere all at once and can evade medicines.  It is immune mediated, it is inflammation causing….it is a really yucky bug.  I believe in a connection between EoE and Lyme.  So that leaves me… completely on my own at this moment in my health.
In terms of treatment I am waiting to feel that I need anything further.  I am waiting to know for certain that my body needs my help.  I did 3.5 months of heavy medicine.  I have modified my diet massively.  I am exercising again fairly regularly.  I am able to care for my kids with more patience and energy than I could when I was newly sick with EoE (and whatever else).  Things are so good in comparison to those days!  Things are getting better all the time.   I am breathing.  I am so grateful.

Growth. 
This illness has given me deep understanding and empathy for those who suffer with chronic illness.  I understand the pain now, and how bodily pain is just the tip of the iceberg.  I understand the layers now, the anxiety of illness, the depression, the exhaustion, the alternating rage and the acceptance.  The way it changes life on all levels.  Your roll in your family, work place, and friendships changes.   People see you differently.  You cancel appointments without enough notice.  You may feel you have to lie about why you are canceling.   All of this causes isolation.  You grapple with depression, fear, and of course pain.  Pain is more than pain.  It changes the way you move, the time you go to bed, the things you focus on, the things you can do and eat and read and hear.  I get this now.  But here is what I also know:  the breath can literally move you out of pain.  It can move you out of darkness.  It is THE key to vitality even in the midst of disease.  And when you couple breath with movement that is enhanced by breath as in specific yoga asana, you can support the body AND the spirit to move into a better place.  Think nyasa, mantras of wellness that you yourself design, think spaciousness in the body, expanding internally to embody the reality that you are more than your disease, more than your diagnosis–thank you Tammy—more well than unwell.  The breath is almost limitless in its ability to reconnect you to your inner peace.

Things I love.  The gratitude I feel.

Grateful for…

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these guys.

 

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fall leaf piles to play in!

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Sufyan conquering his fear of this climb.  So proud!

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Fearless Laila

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Learning new skills.

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Beela on the playground with my kids.

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Beela being such a patient, maternal dog with my little ones.

 

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sensory exploration with paint

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My friend who let Sufyan try her real camera.

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friends for my kiddos

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friends who like to paint

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Halloween ghosts made by my kids!

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the kids playing and creating things while I do 30 minutes of elliptical machine

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the love they share, even though they bug each other a lot right now.

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my exuberant 3 year old Laila dancing in fall weather and fall leaves

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The first time the kids made a recipe all by themselves.  Sufyan read the recipe, Laila and he dumped and mixed and tasted it all…Gluten-free and dairy-free, these almond flour chocolate chip cookies are divine.

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sharing with them my love of nature.  There is no better playground.

My friend Joy, who is an amazing artist.  She gifted Sufyan this incredible painting that he absolutely LOVES (we all do) and agreed to trade me for a painting that Faris and I love (trade me for yoga classes in her home)

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This time in my life is so full of love.

 

Results, a House, and Lyme Protocol

The morning we began to leave

The sun is up, the birds are awake and loud in the parking lot outside our apartment.  My son is awake, of course, by 6am so here I sit sipping tea beside him while he reads Tin Tin.

This is a massive apartment complex.  Hundreds of doors and endless beige paint.   Blacktop, cars, and other lives stacked one above the other in neat towers.  Identical floor plans, windows with identical venetian blinds,  trees spaced evenly around parking spots.  Neat.  Tidy.  We sit inside our screen, my son and I, surrounded by boxes ready to pack so we can fly outta here.

Breakfast is ready.  Laila is up.

Even though I want to leave this apartment, I know I will manage to miss our days here.  I always do.  I will feel the echo of our life in the empty rooms as we pack.  I always do that.  I will literally feel my kids’ voices in the air, and feel all the mornings, all the bath times, dinners, our life.      Whenever we pack up and leave I feel the pinch of nostalgia and the passing of time.  But this time we are moving to a home!  This move (our 8th move and so our 9th residence in 3.5 years) is going to be our last for a long long time.  Insh’allah.

Test results

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sunshine through the clouds

Briefly, it’s pretty much all good news!  I got the results of the EGD.  The biopsies taken of the areas of concern in my belly were expected to return significant eosiniphilic activity and thus indicate progress of the disease and failure of my attempt to control with diet.  BUT that is not the case!  No eosiniphil activity in my stomach!  And super super low eos in my esophagus!!!  In other words, my EoE is in remission by diet alone after all!!!!  HOORAY!

So why the bleeding and why the bile?  It’s impossible without further testing (that radioactive egg test) to say for certain if I have gastroparesis but the bile does indicate it and the biopsy was non-specific which means likely idiopathic gastroparesis (nice way of saying that it could have been a virus causing it or a bacteria but who knows).  Same with the tiny bleeding ulcers.    However, I began a short course of a PPI after the EGD results and by the time I was in my GI’s office for results I was feeling pretty great again.  At the end of the visit he basically sent me off with a big congratulations and “You’re better!  I’m very pleased.  Have a nice summer!”  He was shaking his head in disbelief.  He hadn’t seen this success strictly with diet before and he asked me to please call our allergist and let him know about this success.  I feel so gratified because the diet change has been very hard work.  Not only is my diet very restricted, but I basically have to make all my food at home and take food with me when we are out so that I can control the ingredients.

Typical breakfasts, lunches and dinners for me are repetitive but functional.  What you don’t see is that I am also eating some organic meat.  I am conflicted about eating meat, but this diet leaves no other source of protein.

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If I add anything I react to back in, my EoE will return.   EoE is so miserable that I am not complaining, though.   Who needs chocolate when it means intense pain and nausea?

The Plot Thickens:  Lyme Disease co-infections do what now?

It turns out that Lyme disease and/or it’s co-infections can cause pretty much any symptom you can think of from arthritis to allergies to heart problems to dementia.  Lyme loves to infect joints, heart, gut and brain tissue.  In particular I would like to highlight for myself the fact that Lyme and co-infections in the gut can cause gastroparesis (!) and Lyme (or a co-infection) has been noted to cause eosiniphil increase in the blood.  It also manifests as allergies (sudden onest to food or to other sources).  It can also cause random pain in the body.

(more info here about Lyme and co-infections, and an article about treatment by my doc here)

So here is me:  gastroparesis, sudden onset allergies to food, eosiniphilia, EoE, gastrointestinal distress, deep pain in legs and feet, brain fog and fatigue.  And here is a tiny slice of what Lyme can do:  gastroparesis, sudden onset allergies to food, eosiniphilia, gastrointestinal symptoms, deep pain in legs and feet, brain fog and fatigue.

It doesn’t take a genius to surmise a link between what I’ve been going through and my Lyme disease infection.  It was a lucky discovery that I had it at all, since it seems to have eluded the differential diagnoses of every doctor I saw including my holistic docs.  I say lucky because the longer it goes untreated the worse your chances of ever ridding yourself of Lyme.  I feel like an angel was guiding me when I asked for that Western Blot and got a positive result.  I am quickly learning that one cannot settle for being a patient.  A patient won’t get the help she needs.  To get help, the patient MUST research and advocate for herself.

My Current Lyme Protocol

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I am posting this so that other Lyme sufferers can find it and compare their treatment.  I know it has helped me immensely to see the protocol others are on.

RX meds:

injections of Bicillin (antibiotic) every 3 days into my butt.

Daily 2 doses of Biaxin (antibiotic).

Daily 2 doses of Fluconozole (anti-fungal).

Daily 5 doses of Mycelex lozenges (anti-fungal).

To sustain the bicillin in my system during my 3 days between injections I was prescribed a drug Probenecid.  It made me so nauseous that I had to discontinue it.

notes:  my husband is giving me the injections at home.  Insurance has denied coverage of these and they are $$$$$, which sucks.  This means the bicillin better work asap because it is not sustainable for us.  Injections at home are going very well, thanks to my incredible partner who is both kind and brave about it.  My butt cheek is sore for days but that’s par for the course and we are rotating spots and sides of course.  The anti-fungals are needed but make me nauseous.  Needed because I did get a nasty side effect called Black Hairy Tongue.   Look it up, it’s gross but harmless and it’s gone now.

Supplements: 

gut health:

VSL#3 (probiotic)

Sacchromyces B (probiotic)

inulin (pre-biotic)

liver support:

milk thistle daily

system support:

cholorella, buffered vitamin C, hemp protein, Intramax vitamin supplement, hemp oil, vitamin A

Lyme specific formulations:

Interphase

Transfer Factor Lyme Plus

Transfer Factor Multi-immune

homeopathic Ipecac for nausea

Diet:

Continued restriction of nightshades, caffeine, fruit and nuts.

Continued avoidance of all grains, dairy, soy, farm-raised fish, legumes, sugar, chocolate (have cheated once or twice with a tiny amount), and alcohol.

Have added in:  organic eggs and some nuts.  Occasional cup of caffeinated tea seems ok if less than 2x/week.  Using only raw honey as sweetener.

Also:  epsom salt baths and body brushing to increase detoxification.

Mental and emotional aspects of Lyme treatment

Briefly I want to say that Lyme disease and it’s treatment can be intense, scary, and even traumatic.

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apprehensive about first IM injection of bicillin. waiting for the nurse.

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even the surrounding medical equipment made me feel like I had entered another dimension. The LYME zone. O2 chamber.

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arm chairs where people sit while they get IV therapy.  Just feels so strange to be here.

I am currently dealing with a fear of ticks that manifests in fear of nature.  Me, a nature lover who lived in a tent for years during the summer and spring…I now have a serious resistance to sitting down outside in the grass and refusal to go off trail and explore areas that are likely to have ticks.    I am working on it, since my MO as a mom has also been to constantly get my kids outside to play in natural settings.  SO basically I force myself to get on with life, and get out there.  It takes me tick checking myself and the kids all the time, and I use a natural tick repellent every time we step outside.  BUT these magic feathers do help me deal with my fear and not be immobilized by it.

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into the woods we go.

Meanwhile, I have to constantly monitor internal dialogue about getting injections and being on huge doses of medicines and their side effects.  To help, I have joined a meditation group based on mindfulness technique as taught by Jon Kabat Zinn.  This technique is specific to chronic illness and chronic stress.  It’s called Mindfulness Based Stress Reduction, or MBSR.  Something to keep in mind if you are dealing with a chronic illness or other stress.  It has wonderful studies to back up it’s efficacy.

And yoga yoga yoga yoga and more yoga.  Mantra.  Asana.  PRANAYAMA.

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HOME! 

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We are now in our home!

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the seller is a cool dude, and he and his daughter left this for us on our first day in the house. lovely!

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making the house theirs with some window crayons, also left as a gift for Sufyan and Laila by the seller.  You rock, J.

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Sufyan insists that we not call it the “new house” but instead only refer to it as “home”.   Can’t blame the poor kid with all the moving we have done.

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S and L in a previous move from Austin to Ohio. I believe it was move #6.

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S and L in this move. Sitting on their rolling suitcases and ready to go!

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Laila unpacking her shoes!

Laila and Sufyan love the house.  So do Faris and I.  Such a feeling of peace for us to wake up in our own space, and in particular to be able to simply walk out a back door to get outside!  My kids play outside in their PJs when they wake up, and naked at noon, and any other way they want.  I love it.  There is a persimmon tree which makes for great climbing and is going to bear a lot of fruit.  There are also 2 apple trees which have sour little green apples all over.

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Sunrise in our backyard is magical.

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In the morning, Laila and I have taken to sitting on our bench swing and listening to the birds while Sufyan climbs his persimmon tree first thing.  We have a resident wood pecker.  In these moments life is so perfect.  So sweet.  I drink it in and am so grateful for my family and for having a home.

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7am. Sufyan and Baba share a box of raisins and a little morning swing.

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S and L reading in their new room!

Time for silliness!  I told them to get dressed and instead we had an impromptu costume party.  Love it!

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