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.
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)
enough with this walking, mama…let’s GO!
I managed to capture the look on S’s face when he saw the ocean
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?
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.
My little ones were instantly happy and completely engrossed.
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.
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.
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:
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.
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….
In the evenings and at rest time the beach house was stocked with games and crayons enough to keep everyone busy.
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.
Yoga, Mama?
As I was practicing yesterday morning, I had a little a-ha moment. It was this:
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.
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.
(while I am deciding how to write a health update, here is a bit of catch-up on life)
This year, Baba’s birthday snuck up on us. We (the adults of the household) have a rule that small gifts are ok between us, but it has to truly be a small gift. As in nothing expensive. Our funds have places to be and people to see. We just bought a house, after all.
So the kids and I potted an aloe plant for Baba in a pretty blue pot that we found in the shed (another gift from the generous previous owners of the house). Then we baked him a grain-free, dairy-free, nut-free carrot cake.
The cake sounds like “carrot no-fun cake”, but in fact it was one of the very best carrot cakes I’ve ever tasted. We even skipped the frosting as it didn’t need it, and I couldn’t have eaten it anyway.
Recipe here (as you will see we skipped the nuts, too, and we added raisins. Warning that this recipe has a 1 hour soaking of grated carrots, so if you are cooking with little ones you better plan in an hour of doing something else).
Then the kids dictated some sweet letters to Baba and decorated an envelope for the letters and made some pipe cleaner sculptures for him, too.
While we are recipe sharing, I’ll include this one for the homemade chocolate that has been my constant companion lately: Homemade, vegan, as few as 4 ingredients. Recipe (and a great food blog) here. For this batch, I added coconut shreds, toasted almonds, cocoa nibs and cardamom.
The best part of the birthday celebration was the evening. We spent it with new friends. Not just any new friends, but fellow (healthy) foodie friends who prepared a homemade sushi night for the birthday dinner! It was AMAZING and so fun. What’s more fun than making your own sushi rolls and then eating them right then and there?
And of course the kids ended the dinner with a costume walk, as has become their custom (a custom that I really love)
And finally, my friend (being the thoughtful person that she is) made us a truly delicious coconut custard dessert with fresh fruit. She even remembered a candle. We had a wonderful time, great food, and even better company.
First I want to welcome the newest member of our family:
Beela!
Beela is part Beagle and part Basset. Or something. She is a lovely, sweet and patient family dog.
Beela is the ending to a story that most people who love dogs and rescue dogs know. The story starts with a person going to the shelter to meet the cute puppy whose picture she saw online (the puppy who has 10 other admirers lined up while the older dogs watch from behind their hurricane fence cages). It ends with the right dog finding the right person at the very moment when the two need each other most.
After getting in line to pet the cute puppy, I walked down a silent row of mostly empty dog cages and paused in front of one that read, “My name is Junie B. I am 1 year old.” Junie is the nick name of Sophie, a very brave little girl who is fighting brain cancer and the daughter of my good friend Jenna Vincent–read more here. So of course I had to stop and see the dog who had this name. And to my surprise, this dog had “the look”. Dog people know the look, especially those of us who have done more than a few rescues. That look.
Here is how she responded to me:
Of course it’s different once you have kids. Adding a dog is higher stakes. No one at the shelter knew anything about her. All they knew was that she had transferred from another shelter, and that she had been a stray. They thought she “might” tolerate kids. So we brought the kids in to meet “Junie B” to make sure she was a kid dog.
Amazingly, in that pee-smelling, stressful, busy adoption room at the shelter, “Junie B” had the most gentle demeanor and even gentler mouth with all of us. Taking snacks from our hands, she was calm and polite. She made eye contact and loved to be touched. She was clearly a keeper. And YES, emphatically, she is a kid friendly dog. Here she is being a great kid dog:
We named her Beela because there is only one Junie in my life, and clearly the universe was using that name just to get my attention.
settling in to the good life.
Things I love
I love:
the way reading Tin Tin has translated into Sufyan’s real life. He winds up to run like a drawing of a superhero about to speed away.
the feeling of having a home.
natural playscapes
I LOVE:
our new public library.
that they held hands in their sleep (even though they torture each other when they are awake).
pretend play (here with dress-up shoes as phones)
I LOVE:
Laila’s method for choosing an outfit–lay it all out and walk around the bed saying, “hmmmm” while tapping her bottom lip with her index finger.
dress up play!!!!
I know. She’s the princess in every shot. And in reality. I swear it must be innate because not only am I a self-proclaimed anti-princess, but we do not have TV, do not watch regular cartoons, and my kids don’t go to any kind of school or care situation. And still, she’s the princess. Every. Time.
(Laila and her favorite friend dressing up)
I LOVE:
making them natural versions of comfort food (raw macaroons, vegan rice crispies without refined sugar, and our version of Lara Bars which we call, “Mama Bars”.
RAIN PLAY!
I love that chalk gets brighter on wet pavement.
I LOVE:
ear protectors to help us deal with loud noises, which now includes Beela’s barking.
I love how goggles make us fearless of water.
I LOVE:
improvised face painting while Mama wasn’t looking (yes, that’s marker)
the look on Laila’s face when my mom gave her her very first doll. First doll ever. Oh MY GOSH it was adorable how she fell instantly in love.
And I love this man.
He’s the best father and partner I could ever have imagined. At times recently it seems like he’s carried us all. Really.
There have been so many nights that I have had to go to bed at 6pm and by 9pm after he’s gotten the kids fed, bathed, and put to bed (not to mention worked a full day) he comes in to take care me while I go through the depths of nausea and pain and fear. He’s been my rock.
(Getting chased by kids with water guns in the back yard.)
the way Laila thinks quickly. She’s a little imp. I put her on the hood of the car for a moment to grab my keys out, and literally 1 second later she was sitting defiantly on top of the car. Look at her face and her Baba’s face as he tries to get her back down… says it all.
And I love that my mom came to stay with us and help us through this time.
Karmic Spider. How a spider changed my life, at least for now.
So my Lyme doc re-ran the test for Brucellosis because he “had never seen a case” and it must be a lab error. This was in June. In July I got the results that in fact again I am positive for Brucellosis. I called Dr Lyme with the results, and he basically told me he doesn’t know how to treat, would look it up, and not to worry he’d see me again in 3 weeks. WHAAAAAAAAAT? It took me 1 minute to find Brucellosis on the CDC website and learn it infects brains. And spines. And any organ. I am NOT waiting 3 more weeks!
Ok, so I got off the phone shaking my head in disbelief at the lack of action and care. I called an Infectious Disease specialist and spoke at length to the nurse who told me to go to the ER if I felt “at all” worse in the week it would take for me to be seen. “You sound sick,” she said. Yes. I am.
Got in to see an ID doc who looks over my extensive chart and notes and takes me off all the antibiotics Dr Lyme had put me on, and puts me on 2 others to treat the Brucellosis (Doxycycline and Rifampin). He orders a bone scan.
On Thursday I had the scan. 3 parts. Part one is to get injected with a radioactive tracer. Let me not linger over that, because it is horrifying. I don’t care that it’s “less radiation than blah blah blah” the bottom line is I get injected with a radioactive material. Part 2 is pictures of my veins disseminating the tracer. Part 3 is to go home and wait for 4 hours and return to get pictures taken and a 3D CT scan.
So I am waiting the 4 hours and during that time I managed to get bitten by a spider. On my hand. With the welt coming up encircled by red and lines going up my veins, the nurses at the scan told me I should go see my doctor right away. Ha ha ha! Thanks, Universe! I thought. Because I need another thing to worry about.
So after the scan I walk to the next building to drop off the pictures at my Infectious Disease doctor’s office. While I’m there I ask if a nurse might look at my hand. I am seen by a doctor. Doctor Clear, I’ll call him. Dr Clear isn’t concerned about the spider bite but he is curious about my diagnosis of Brucellosis. He is the ONLY doctor I have talked to who has ever treated a human case of it, and he doesn’t think I exactly look like a Brucellosis patient (ie I can walk, talk and exist outside a hospital). And he took an interest in my case. He asked lots of questions. He spent 45 impromptu minutes with me right then and there. He answered my question about the timeline of this infection (it doesn’t match Brucellosis) and he tells me that basically he doesn’t think I have it. He mentions better blood tests to find out and at the end of the visit I begged him to take me on as his patient. He agreed and the next day I came back to see him. The result? Bone scan was clear. He really doesn’t believe I have Brucellosis, but he ordered that better test (an agglutination test?) and he came up with some new ideas. Like that it could be TB. A type of TB that is transmitted in unpasteurized cheese and not via droplets. It could easily lie dormant for the year it took for me to get sick after Palestine. He is going to test my thyroid because of all the weight loss (which is continuing) and hair loss (new and gross. Between hair loss and black hairy tongue I am so hot right now). But the biggest thing?
He took me off all the antibiotics. All of them.
So where am I now? Going back to square one. Detoxing my system of the effects of all the antibiotics and seeing what is really my illness and what is the toxicity of the drugs. After all, I have been on heavy doses of all kinds of drugs for 3 1/2 months solid. Doxy, then biaxin and doxy and nystatin and mycelex, then biaxin and bicillin injections and mycelex and diflucan, then diflucan and biaxin and amoxycillin and mycelex, then doxy and rifampin and nystatin and mycelex….
I’m holding my own. I’m keeping a fever journal (no entries yet) and keeping track of my pain and candida infection from the antibiotics.
I feel pretty good, and since Friday I have been slowly feeling like myself a little again. I am scared about what all this means, and what could happen. But I feel that this is the right move.
I mean, I am sick. I have some infection that we don’t understand. I am losing weight and hair and I have EoE and I am being sent to a rheumatologist etc…but at the same time without the drug side effects I am feeling better. So far, so good.
Oh, and Dr Clear also said this: “We will get to the bottom of this.”
He is the first doctor to reassure me that I will get better. That I will recover. I really really need to hear that.
Piles of Laundry 
