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

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!

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.

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.  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.

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:

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.

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

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.

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.

herbs

 

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.

Wait, there’s more

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.

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

lots of squash

carrot juice

SO…where is the yoga in this?

Yoga. 

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.

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.

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.