EoE. And Lyme Disease. And it’s all Yoga.

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Life has been moving at an amazing clip.  We are in the process of buying a house, we were gifted a second car, Sufyan and Laila are taking a martial arts class and got their belts yesterday, and I am returning to teaching (and I’m really excited)!  Oh, and they both learned to ride pedal bikes without training wheels.  Amazing little beings.

But right now it’s time for a little house cleaning, and there is a lot of ground to cover.

When I first started to compose this post (over a month ago) I knew what I wanted to say.  It was that I had been very ill with some mysterious illness that was making my life very difficult, and that I had been going through tests and illness for the last 6 months, and that ultimately I had been given a diagnosis and a recommendation of medications to take.  Then I wanted to tell you that I had avoided those medications and put myself into remission all through diet changes.  Massive diet changes.
And that was all true until April 17 when the illness returned with a vengeance.

This post is devoted to my own yoga and how its helping me face a new reality in my life.

Yoga and illness.

6 months ago (and why I haven’t blogged)

Last November I started to get sick.  We thought at first it was a succession of stomach bugs.  But then we started to wonder.  Every 7 -14 days I was hit with intense nausea and sharp upper abdominal pain.  The pain and nausea would begin in the evening usually, with a cold wave of nausea and then me running to the bathroom and then teeth chattering chills and body “shakes” followed by more pain and nausea.  Then the pain and nausea would go on for days.  At first it was 2 days, but gradually it stretched into a week at a time.  One bout would end and another begin.  My husband would stay up into the wee hours of the night to take care of me and sometimes have to miss work when I was too sick to care for our kids.

I was becoming quite anxious, too, and generally worried about my health.  Against my better judgement I googled my symptoms all the time.  Cancer?  Gastroparesis?  Ulcers?  Fibromyalgia?  Cancer?  Parasites?  Cancer?  Pancreatitis?  Gall bladder?  I couldn’t sleep through the night.  It got difficult to feel happy.  I was afraid of what was happening.

I didn’t know from day to day if I would be sick or well, and I often had to break plans unexpectedly which made finding friends here much more difficult.   Who wants to meet the new girl who keeps getting sick?  I slowed in responding to emails and phone calls because I was tired all the time, plus it got hard to say I was doing “fine” and even harder to say I wasn’t.  So I generally have avoided conversation.

I kept a food journal, but it yielded no clues.  I got blood and urine and stool tests.  Nothing.

By February I had lost 15 lbs and was feeling like crap more than half the time.   This is not me, I kept thinking.  I am not a sick person!

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tired and mid-illness

And the sickness just kept on happening.  I began to go long periods without eating, so I made broth because often that was all I could eat.  My husband bought protein powder and greens to take the place of my missing food.  I developed an asana practice that could be done during nausea.  I had been to urgent care for nausea and pain 3 times in the preceding 2 months.

Then came this emergency visit to my doctor one weekend.  I had been sick for about 4 days and was not able to recover or eat.  I was weak.  I knew I had lost more weight, and had prepared myself to see a certain number on the scale.  But at the scale I was 4 entire pounds (!) less than I had anticipated.  It scared me.  I started crying right there in the doctor’s office.

A nurse sat with me and calmed me down.  He told me they were doing all they could.  Kindness is truly a panacea and I am grateful he was there.  The attending doctor told me that “something was afoot” but she didn’t know what.  She did tell me they were “worried” about the weight loss.  They took more blood and sent me home to my husband and my kids with more anti-nausea medication.

I was referred to a GI doc.  He ordered an urgent CT scan with contrast.  I drank barium and was injected with iodine.

yummy barium.  YUCK.

yummy barium. YUCK.

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a little light reading at the radiologist while I enjoy the second bottle of barium.

It turned up nothing, which was fantastic news, but I was sicker than ever and the barium and iodine brought on another bout of illness.

waiting in the GI office for colonoscopy.

waiting in the GI office for colonoscopy.  Really tired and really in dehydrated.

I had a colonoscopy.  I had to drink this awful stuff called “Suprep” to clean me out and then go under anesthesia.   Nothing found.  Again, fantastic news.  But I was still sick.

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becoming a patient:  first EGD

A week later I had an upper endoscopy (EGD), also under anesthesia.  The only finding was mild to moderate Esophagitis.   Too mild a finding to be our answer to all the illness and I was still sick.

The GI doc scheduled a gastric-emptying test wherein I would eat a specially made radioactive egg and get x-rays as I digested.  It sounded like science fiction the way the woman on the phone described a special chicken laying special radio active eggs (yuck), and I reluctantly made the appointment but would ultimately cancel that when I got the following news a week later:

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eosiniphils

the biopsy taken from my esophagus had returned a finding of eosiniphils in my esophagus which, the nurse said, indicated an allergic reaction most likely to food.  She didn’t explain anything but did say a prescription for a PPI was called in for me (like Nexium–a proton pump inhibitor).  I hung up the phone and after the initial shock, I started to research.

I found that eosiniphils in one’s esophagus can, but do not always, warrant a diagnosis of a condition called EE or EoE:  Eosiniphilic Esophagitis.  It is a relatively new diagnosis and was considered rare until recent years.  It has a rising incidence that is only in part thought to be due to awareness.  No one knows why.  It is also thought to be genetic and latent until triggered.

Long story short, I have Eosiniphilic Esophagitis, or EE or EoE, and while there may be more than one cause including genetics and acid reflux, mine seems due to some kind of sensitivity to a food and/or an environmental allergen that builds up in my system and makes me sick.  The food journal is useless for EE like mine because literally a reaction takes days to weeks to occur and by then the offending food is so far in the past you can’t tell which thing did the damage.

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patch testing.

I was sent to an allergist who did prick, patch and blood testing.  Again, nothing.  Not a single allergy showed up.  While I found that bizarre, it’s apparently kind of normal in the world of food allergy testing and with EE there are sometimes no true allergies to go by.

prick testing on my arm

prick testing on my arm

I did not eat the radio-active egg because my wonderful cousin, an intuitive woman and a student of natural healing, stepped in to urge me to see a holistic doctor.  To quote her: “DO NOT EAT THAT RADIOACTIVE EGG.”  She hooked me up with her holistic doctor in Michigan which spurred me to go see one here.  And that’s when things changed for a little while.

I took supplements for digestion and gut healing, and I took out a few foods and for 8 weeks everything got immensely better.

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Things were so good, in fact, that when I had a check up with my GI doc he smiled and said I could just keep doing what I was doing!  It was celebratory.  I was so happy to have done it!  I put myself into remission just with diet!  Amazing!

But then one night a month ago at exactly the 8 week mark for my “remission” I was stricken with horrible nausea, vomiting, diarrhea, and a fever that climbed to 102.  I had been taking chinese herbs from an acupunturist, but found out later that these herbs may have contained allergens!  Duh.  I should have checked.

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herbs

 

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part of my acupuncture treatment

This illness put me in bed for 3 solid days.  After that illness, I have been unable to regain any balance.   I am sick nearly daily with nausea, night waking nausea, and weight loss.  My GI doc ordered another EGD.

I have now lost 20 lbs.

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Wait, there’s more

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got this image from a website about life with Lyme

And THEN a week ago I found a tiny (nymphal) tick on my abdomen.  It was attached.  I took it off.  I began to wonder if I should get tested for Lyme and co-infections. Then it hit me:  could some of what I have been dealing with be Lyme disease?  Could I have been infected all this time and not known it?  I did live in the outdoors for most of 3 years in WV and I remember a couple of tick bites.  I have been dealing with chronic pain in my legs for years that is bad enough to keep me awake some nights and is unexplained by doppler or chiro or physical therapy.

On a hunch, I went to my regular GP and I ordered a bunch of blood work including a Western Blot to test for Lyme.  Guess what:  it came back positive.  Not positive for that recent tick, it was too early, but positive as in I’ve had Lyme for some time and never knew it!

I have been tested for 2 co-infections of Lyme called Babesia and Erlichia and again for Lyme itself (this time with an ELISA test).  All negative.  But the tick that bit me was tested and returned positive for Lyme.

I had my second EGD about 10 days ago and my condition is much worse.

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another EGD. becoming a patient.

Even with all the foods out of my diet, my esophagus is really inflamed and my stomach has dozens of new tiny bleeding ulcers.  Bile was also seen pooling in my stomach.  With all that plus Lyme disease, it’s no wonder I have been feeling so terrible.

I will be getting my EGD biopsy results back next week and on May 30th I begin treatment with a Lyme specialist in DC.

Food avoiding

Here is what I am currently not eating:  processed sugar, all grains, all gluten, soy, dairy, eggs, nuts, legumes, chicken, beef, fish, chocolate, caffeine, coffee, nightshades, quinoa.  (did you know that nutmeg is a tree nut?)

Here is what I do eat:

dinner

dinner

lots of squash

lots of squash

carrot juice

carrot juice

SO…where is the yoga in this?

Yoga. 

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It’s all yoga.  Yoga is me learning to live with my new reality.  Yoga is the gratitude I feel now for what illness has taught me.  I have a new deep appreciation for the hard work of people who live with chronic pain, who struggle daily with simple things that I used to take for granted like enjoying your children’s company or cooking a meal and eating it.  I have worked with students who have MS, Fibromyalgia, cancer, arthritis, and chronic pain and I felt compassion for them …but now I actually “get” them.

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Yoga is this:  I am getting up and fighting this with love.  Sometimes my mind goes to really difficult places where I fear my own body and am worried that I am dying and that there is some undetected massive illness beneath all this.  But I have more and more moments where I know that this is just life.  This is embodiment.

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The human body is imperfect, but it is the vehicle that our life force/soul/prana/consciousness has been placed in.  It is our obstacle and our greatest gift.  I am learning that I can do more while feeling ill than I thought I could, and that the comfort of a kind word is just unspeakably beautiful to someone who is feeling alone and afraid and ill.  Knowing that I am part of a bigger picture helps me let go of my smaller, uncomfortable picture.

Yoga is this:  it is my children needing me and also showing me the light through their love.  It is sheltering them from my ups and downs as much as I can, and learning to play with them even when I’m really not well.

Yoga is this:  getting to my mat daily and loving myself as I am.  Loving my body, now 20 lbs lighter and slightly foreign feeling to me, without being afraid of it.

Yoga is this:  it is hearing birdsong and taking joy in it, letting my mind enjoy it even while feeling intense pain or nausea at the same time.  I have had to expand my consciousness because of this illness.  It has forced me to realize that I truly am not this body.

I am not this body.  And I am so grateful to know it, and so grateful to have my life and my children and my incredibly supportive partner.  And my friends who have not gone away even through this.

I am strong, and I am also really blessed.

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short and sweet

Onomatopoeic and just plain silly

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Laila dictionary:

Clobzers:  my kitchen tongs.  And when she is using them, she is “clobzing”.  As in, “What are you doing, Laila?”  “I’m just clobzing, Mama.”

Dinkers:  the name tags on my parents’ cat’s collar, which make a “dink dink dink” sound when the cat walks

Tipet:  the base of a bowl/the little rim on the bottom of a bowl that keeps it stable.

Pones:  ponytails

Too much yoga?

We do start every day with yoga.  Well, nearly every day.  Last week Sufyan asked me, “Mama, does my third eye blink?”

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Sufyan sounds like a 1920s comic book. 

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Sufyan has been reading too much Tin Tin.  How do I know?  First of all, he can recite from rote certain pages along with their page numbers.  Just to be clear, I didn’t choose Tin Tin or Astrix for him to read.  He found these at my parents’ house and fell in love.  I have to set limits on his reading time in general or he will curl up in a chair and read for hours on end, only stopping to run to the bathroom.  He even brings a book to the table to read while he eats!

Where is my son?

Where is my son?

He has started to use dated language, which is just so funny.

Examples:  “I’ve already had a go!”  or  “That’s funny, eh?“  or  “It’s simply lovely!”

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A visit. Some self inquiry.

The Drive over Mountains in the Winter

Today I am visiting my parents’ home.  The kids and I made the 6 hour trek together over

foothills of the Appalachians           IMG_1917.

At one particularly guardrail-free mountain pass, the sky darkened and we were pelted by icy snow and mama’s knuckles were white.  We kept going in and out of little flurries the whole drive.

When the sun was out, the drive took us through some beautiful countryside.  Rolling hills, cows nursing calves, old red barns, and country homes that made us all say, “I want THAT one!”  (Sufyan and Laila are onto the house hunt).  It really was beautiful.

I’m proud that my kids have learned to travel well.  It’s a huge relief.  As any parent knows, packing for a trip can be a lot of work, but worrying about the meltdowns and pitfalls is equally exhausting.  I just don’t worry anymore.  I pack as well as I can (I over-pack) and then head out into the unknown.

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running some “doots” out at a rest area

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stopping to play makes the drive so much easier.

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we stopped at the same place on the way home.

After the experience last summer where I basically got sick in the middle of our trip and couldn’t drive or function and had to leave my kids with strangers while I puked, I was a bit nervous to take a long road trip alone with the kids again.   But I reasoned that I can’t let my fear stop me from traveling.  After all, we moved here just to be close enough to my parents to drive for an easy visit.

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we arrived just ahead of the snow.

We are visiting with a twofold purpose.  Well, threefold if you count seeing grandparents (which of course I do):

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drawing with Nana

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Laila is IN LOVE with this kitty. Her name is Chole. She is about 24 years old and Laila pretends to be Chloe at least once a week.

First, to meet our new cousin Emma.

Emma!  I’m so glad we got to spend time with this little girl!  She’s an amazing little person.  What a spark she has.  I don’t think I have ever met a baby quite as sure of herself or as happy to do new things.  She is bright, like her Mama.

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She seems to love her big cousins, too.  And it’s mutual.  There have been dance on the bed parties, splash in the bath parties, rise and shine giggle-fests and many sweet moments of just being family together.

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Sufyan dressed for bed in his Mardi Gras beads. They played so much they even played while going to sleep.

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Laila the big cousin

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Laila in particular is reveling in her role as big cousin.  She is so sweet to Emma!  This morning as Emma crawled over our bed, Laila silently got up and left the room.  She returned with a toy she picked for Emma and the 2 proceeded to play together with their airplanes.

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Laila has a care-taker streak that I knew about, but hadn’t seen in action with a little person before.  It’s great.

Second, to reintroduce myself to a dear friend whom I have held in my heart all these years

This trip was about something else big for me personally, too.  Emma’s mom is my cousin and childhood best friend whom I hadn’t seen in nearly 20 years.  Growing up, we spent every possible moment together until sometime in late middle school.  All my childhood dreams, mischief, thoughts about life and who I was and would be…all of it is connected to her.  We had stables of imaginary horses, scads of bad ideas that got us grounded but made us laugh.  It was the kind of friendship that is only possible when you grow up with someone.

Then high school hit us…hard.  Like I said, we haven’t spoken in 20 years.  Isn’t there some saying about how the people who are closest to us are the ones with the most power to hurt us and vice versa?  Oh, I remember it now.  It goes, “High school sucks.”

There was a time when I thought the mountain of baggage between us was insurmountable.  But it turns out there is no solid obstacle between us.   All that stands between us is what we aren’t willing to understand about those really difficult years of adolescence, or what we aren’t willing to see with adult eyes.   The beauty of having her back in my life is that we can decide what we carry forward now.  And whatever we haven’t grown past and forgiven in ourselves,  that’s the work.  No great unknown.  Nothing insurmountable.  Lots of love.

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I couldn’t get over seeing my cousin, this person who I’ve known all my life but last saw when I was a teenager, playing with my son!

For me, all of the crap fell away as soon as I saw her (and the baby in her arms).  She has been the friend that I have unconsciously measured so many friendships by.  She was always there in my mind, in the way I look at the world and in the way I relate to other women.  She and I are long past achieving our goal to grow up and work together as vets or in a zoo, but we have the chance to be moms together now.  That’s a zoo of sorts, anyway.

When the visit ended, we said our goodbyes and made promises to see each other soon.  It’s hard, because we are separated by such a lot of miles (we each had to travel 6 hours to see each other and we each had a kid or 2 in tow).  But the miles weren’t what was keeping us apart all these years so they seem relatively small in terms of obstacles now.

Here’s to a new beginning of an old friendship.

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Laila says goodbye to Emma

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Sufyan gives Emma a serene little goodbye hug

Who am I, and what am I to me?

I am lucky to have several good female friends in my life, though they are all over the world (Amman, England, Ohio, Germany, Palestine, Texas, Pennsylvania–which is in fact another country, right Ki?) and it is with these women I am the least self conscious and the most “me”.  With my cousin, I have never been anything but “me”, although the “me” has changed somewhat since we last talked.   I kept wondering if what I am now is enough.  I haven’t had a moment of subversion or deviancy for years!   Am I as interesting as she hoped?  It’s making me wonder if what I am doing or not doing right now in my life is enough for me, too.

These are questions that in motherhood are hard for me to answer.  Am I living my life for me? Am I allowed to live for me right now when I am so needed by my little ones?  On the other hand, if I want them to know how to be themselves I should lead by example.  In that light, I feel pretty hemmed in.  It’s late.  I haven’t danced in the moonlight in a long LONG time.  Moonlight has generally meant that I should be asleep because sleep.  But how asleep am I?

I haven’t gone skinny dipping in years.  I never did burlesque and it’s clearly too late for that.   Did you even know I have a massive tattoo on my stomach?  And 2 others that also aren’t small?   How long since tattoos were even part of my “who I am” equation?

I never became a DJ (stop laughing!).  I haven’t designed those shoes.   I never painted my walls with art created by that special strange place in my head that turns on when I light candles and listen to Nusrat Fateh Ali Khan.  Or The The.  Or whoever.  When am I ever going to have intrigue again?  Maybe never.  Is that ok?  Is it shopping at J fucking Jill from now on????  Oh god. Get me to the nearest Goodwill.  Or not.  Am I even interested in vintage finds at Goodwill anymore?  WHO THE HELL AM I NOW THAT I AM A MOTHER?

These are questions and issues of timing I can’t quite lay to rest right now.  It’s good to question.  Do other moms feel like this?

Some pics of our trip:

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loving his new hat!

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Laila’s new hat!

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out for a walk in his new Eagle hat

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visiting good friends. I adore being in their beautiful, sweet space.

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quiet morning that only happens when I am out of my normal routine.  Need to do this more!

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His first hidden word puzzle!  He did it
all himself.  No help from Mama.
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“Mama, I’m feeling a little sad. I wish Baba was here.”

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exploring the town with Nana!

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exploring the town without Nana…or anyone else! Wait up, Laila!

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Hat Shopping at a Vintage store with Laila

We had so much fun trying on old hats.  Laila loved it as much as me.  She would put one on my head and say, “I like it.  Actually, I LOVE it Mama.  But it’s not quite the right style.  Let’s see…” and put another one on my head or on hers.

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she had to hold the mannequin’s hand!