THE UNEXPECTED GIFTS THAT AUTOIMMUNE DISEASE BROUGHT TO ME.

The other day I cried while loading the dishwasher.

You are probably thinking, I cry when I have to clean the toilets. It’s called housework, and we all have to do it, so get over your little pitty party and put on your big girl underpants.

Fair enough. But there was a reason I was crying, and it had nothing to do with the actual task at hand and everything to do with what my life had become at that moment. Bent over on a knee scooter, recovering from a second reconstructive foot surgery in four months, unable to walk and losing strength in my arms and hands, I was stuck. The wheel of the scooter was jammed between the dirty tile floor and the open door to the dishwasher, while the bottom rack held a heavy ceramic crock pot which made the rack impossible to slide back into the dishwasher. I couldn’t even close the damn dishwasher without my eight-year-old’s help.

At thirty-nine years old, I felt totally helpless and old and…guilty.

My family didn’t ask for this.

My husband didn’t ask to be the sole provider while driving kids to school, giving them baths, cleaning the house and picking up groceries. He’s like a single parent except he has to pay my medical bills, which we all know aren’t cheap. He didn’t ask to give up vacations because I can’t hike in Oregon and can’t wear flip flops in Carlsbad. He didn’t ask to forego fancy anniversary dinners because I have severe food sensitivities and can only wear sneakers, anyway. No, he didn’t ask for this life, and he couldn’t have imagined it fifteen years ago when he said his vows.

My kids don’t deserve a mom who can’t kick a soccer ball or camp out on the living room floor. They shouldn’t have to hear all the reasons why I can’t take them to the museum or the trampoline park. They deserve better than a mom who screams in agony and frustration when they accidentally hit her elbow with a book. Yeah, a book.

So what does one do when faced with this guilt? I’ve found a few things that help.

1.     Remember it’s not your fault. I repeat, it’s not your fault. You didn’t intentionally make yourself sick. In fact I’d bet a million bucks (or maybe a year’s worth of medical bills) that there isn’t much you wouldn’t do to make yourself well again.

2.     Know that you are deserving of love regardless of your physical condition. Do you love your parents or grandparents any less when they need help opening a jar of sugar-free jam, get cataracts or need a hip replacement? (Note that you are allowed to dislike the sugar-free jam. Artificial sweeteners are crap.)

3.     Put yourself in their shoes. I’ll be honest, I struggle with this one. The kids are easy. I grew up with a mother afflicted by RA. I never resented her or felt slighted. But my husband…well, I never thought of him as having a caretaker’s mentality, and that’s what he has become. Most men are physical by nature, and my man is no exception. They are drawn to the physicality of their mate, and some days my physicality looks like I just walked off the set of The Walking Dead. All I can do is try to fulfill his needs as much as possible and show my appreciation for his loyalty and care of our family.

4.     Think of everything your loved ones have gained. Say what??!! Sounds crazy but it’s true, there are things to be gained. I believe my children are learning empathy and compassion. When my son has to refill my glass of water and my daughter has to retrieve ice packs, they learn to put others’ needs before theirs. Anyone with small children can agree that is not instinctual for most kids.

5.     Embrace the times when you must slow down. My limitations have forced the family to slow down at times. Maybe we didn’t travel the way we had planned this past summer, but we rented a cabin a couple of hours away and were able to unwind. The kids got to play in the creek and get muddy. We went fishing and listened to Pearl Jam. (Typical fishing music, right?) We read books and swung on wooden swings. I’m pretty sure we made a few good memories along the way.

It’s not an easy journey for any of us, but with the right perspective, we can live enjoyable and fulfilling lives with our loved ones.

-Suzy

AUTOIMMUNITY AND THE MAGIC BEANS.

Autoimmunity. It’s the (often) invisible disease that will turn your life upside down and is sure to spark more debate at a dinner party than any presidential election or bathroom segregation. Everyone seems to have an opinion these days.

Chronic fatigue syndrome? Poor diet. Adrenal fatigue? You need to exercise more. No, don’t exercise. Sleep with a grounding pillow. Fibromyalgia? Try yoga. Acupuncture. Arthritis? Cut out gluten and dairy. Go Paleo. Go alkaline. Try some CBD oil. Hypothyroid? You need more iodine. Less iodine. No, you need to remove that root canal. Did I mention I have some magic beans to sell you?

Surely there must be a reason why we’ve seen such a spike in autoimmunity. It’s all caused by leaky gut. No, it’s parasites. Epstein Barr Virus. Vaccines. Heavy metals. Nope, it’s just mental.

Feel free to roll your eyes now if you haven’t already. Ugh, I’ve heard it all. And I’ve said it all at some point in my sixteen years since I was first diagnosed with an autoimmune disease.

I’m not here to tell you why we suffer. I don’t know the root cause, and I don’t know the cure, although I’m working to find mine.

I do know what it feels like to suffer, though. At the age of 23 I was diagnosed with RA. I have since been diagnosed with hypothyroid and adrenal insufficiency. I’ve had high uric acid (no, I don’t drink beer or alcohol of any sort, thanks for asking). I’ve suffered through fibromyalgia pain and all sorts of other weird symptoms that would probably have an autoimmune diagnosis if I felt like going to a doctor. And it sucks.

But I’m not looking for sympathy.

You see, before I was diagnosed with RA, I never thought I would get it, despite the family history on my mother’s side. I was my father’s daughter in so many ways: athletic, always on the go, a busy body. RA just didn’t fit in with my lifestyle.

And then I was diagnosed and figured there must be a reason. Everything happens for a reason, right? Right?

Days when the air outside is damp, the bags under my eyes are more pronounced courtesy of a 2:00am wakeup call from my daughter, my knees hurt too much for a bath but my feet are too sore for a shower, and the dog is eating the sofa …it’s not always easy to appreciate my suffering. But maybe tomorrow I’ll feel better and find someone who is living my yesterday. And I’ll be able to empathize, lend an ear or a helping, albeit slightly swollen and tender, hand. Because you never know who else is suffering silently.

And that is what it is all about: making the best of this journey, bringing awareness, picking up friends- and strangers- along the way. I hope you’ll join me as I share my not-so-invisible autoimmune life.

-Suzy

SOCIAL MEDIA, I LOVE TO HATE YOU AND SO DOES MY YOGA PRACTICE.

I started Instagram this year. I swore up and down that Facebook was enough for me, but I kept hearing Instagram was “better” and “less annoying", so I finally caved. My intention was to only follow people or pages that fed my soul. I'm a nature girl, my first follow was Natgeo (National Geographic). I searched next for people that were in my Yoga community. I loved seeing how real they were, and it genuinely inspired me. My search took me to a few others that were not in my personal community, but who were equally inspiring. Soon I was flooded with images of beautiful, perfect bodies, doing beautiful, perfect Yoga poses. I consider myself to be fairly rational, but I had to remind myself that this was Instagram, not real life. I started to notice feelings of inadequacy creeping in as I viewed these flawless women, because it felt so far from how I viewed myself. I saw myself as flawed and imperfect, and I was okay with that, before I was deluged with perfection. I would go into my practice and attempt to duplicate the Yoga poses I saw on Instagram. I became my worst critic; my comparison game wasn't feeding my soul, it was depleting it. I know I'm not alone in getting sucked in. We all love it, but, ultimately, end up loving to hate it. Social Media can work to our advantage and fulfill our positive intentions but only if we remain mindful. As you navigate through social media, keep the following in mind to avoid opening the floodgates to negative self talk:

1.    You are flawed and imperfect- we all are. A picture can capture only what you allow it to capture. The person posting the picture on Instagram wants to portray to others perfection, and they may be pretty great at what they're doing, but like the rest of us, they have their strengths and are average at a whole lot of other things. They are imperfect and have insecurities just like you do. Remember that, always. 

2.    What is your intention? Be mindful of why you are on social media. We often forget why we connect in the first place. What made us open that Instagram or Facebook account? What were we hoping to gain, find, or learn? These questions will always bring you back to the genuine purpose of connecting. When we start to forget our intention, we start to forget ourselves. We may also find that we need to reevaluate what we're taking away from social media and make some shifts in what we expose ourselves to. It's important to protect our souls and our feelings of well being.

3.    Your yoga mat speaks to you- ok not really, but you get what I’m saying. When you are on your mat, you will at one point or another start to have an inner dialogue with yourself. Listen to this dialogue, but don’t try to change it. Just be present and aware of what your thoughts are. I paid attention to mine, and they said "you are human and that is perfect."

-Nayantara

THE BALANCING ACT BETWEEN PROGRESS AND GRATITUDE.

Oh man, this trip to Bali has left me in the midst of an existential crisis of sorts. This post is going to contradict the last one in virtually every way. I'll need to preface this with a description of the Balinese lifestyle. Present day Bali exists almost solely for tourism. The bulk of the Balinese work in the service industry; transportation, hotels, restaurants, etc. Bali is a pretty inexpensive destination, once you get yourself there. You can eat lovely meals for a third of the price that you would pay in America. A large luxury villa, with a private pool, can be rented for the cost of a Motel 6. We lived like kings for the almost two weeks we were there. These low prices are possible because the Balinese are paid almost nothing for their tireless work. According to one of the drivers we spent time with, the average monthly salary for a Balinese citizen is $150 per month. The government is corrupt, and although gobs of money are pouring in from tourism, little is invested back into the infrastructure of the country. There are almost no sidewalks, and what pathways do exist, are in extreme disrepair. I never saw a traffic light, the roads were incredibly narrow and inadequate. Ngurah, our driver, explained to us that the Balinese education system requires parents to buy books and other necessities that American schools would provide. The tap water isn't potable, and toilet paper can't be flushed because the sewer system can't handle it. Australians have come in and invested substantial monies into resorts and restaurants because, proximity wise, Bali is akin to their Hawaii. Due to Australian efforts, the food and shopping are incredible and the upscale villa rental is off the hook, but this has little to do with government efforts.

We tried to talk to our taxi drivers and servers often, they were all Bali natives and almost none of them had ever left the country. Vacation isn't part of their vocabularies. They work tirelessly, day in and day out, serving tourists who are taking breaks from lives that probably would feel like vacations to the Balinese. Yet, there is no animosity. They have constant smiles on their faces. Any time they say something that might seem negative, they quickly self correct and point out the blessing. Shit, I can't even go to Target without the check out girl bitching about being there, and she's probably 19 years old, working 12 hours per week, and still eating on her parent's dime. At first, I wondered if they were fronting, because they know that tourism is their bread and butter, but it was just too consistent. They have a love and a reverence for life. They adore children. There wasn't a single restaurant we went to where the staff didn't go out of their way to play with my children. Indigo got picked up and snuggled by a Balinese waiter or waitress at literally every eatery we went to. Men and women alike, smiling and relishing in these privileged white children. How? Why? 

Enter my existential crisis. I mentioned in my previous post about all the books I've read that are written by these dynamic individuals who are drinking up life, living without boundaries or limitations, the masters of their own destinies, yada yada yada. I'm trying to replicate that lifestyle. We said screw it and took our three kids on a ridiculously lengthy trip to Bali. We didn't go to Tahoe, we went to Indonesia. Last year, we left everything we knew and moved, from the city we'd been raised in, to another state. We took a lot of risks and worked our asses off to make this possible for ourselves, because we wanted a different lifestyle for our family. Life without limitations, masters of our own destinies, right? But here we are, not content. What's the next trip? How do we make more money? How do we figure out a way to bypass the 9-5 so we can travel unencumbered or hire a part time nanny so we can pursue fulfilling endeavors? More, more, more. It's never enough. When you live in America, the sky is the limit. There is never a point where you have to stop and say, "Okay we've reached the pinnacle, this is the most we can have/do." That doesn't exist here. I'd go so far as to say that it's frowned upon to accept your position in life. 

Then you go to Indonesia and you meet these smiling Balinese people whose entire lives have a maximum limitation. They don't want for more, because they just can't. It's not possible. You don't leave your village, you'll never make enough money to do that. There's no college. There's no travel. But this life with limitations has created content, and that content presents as joy. And then, in opposition, we have life without limitations, which creates contempt. Contempt for what we do have, for our current lives, because we want more. It's hard to appreciate where you're at and what you have when your eye is always on the prize, the bigger house, the better neighborhood, the fitter body, the better job. 

Of course, the answer can't be not wanting for more. We weren't born in Bali. We do have options. If you dangle possibility in front of someone and then tell them they can't do anything with it, the result is depression, hopelessness, not content. It's easier to be content when you look beyond your circumstances and nothing else is around the corner. But that's not what it means to be American, a blessing and a curse, depending on perspective. There's a balance that must be achieved, balance of the most difficult variety. How to have gratitude for where you're at while still living progressively? It's a question I don't have the answer to, but I'm going to take a page from the Balinese, who are Hindu. Each morning the women spend hours making offerings for the Gods, which serve as blessings and as a means to express gratitude. I'm going to start there, by gently and consistently reminding myself of the gifts in my life, my children, my husband, my health, and of course, the freedom to want more. 

-Angi

HOME SCHOOLING IN THE CHIP AISLE.

We’re at the grocery store, and I know you from around town.  Maybe we have mutual friends but we’ve never hung-out together, me a gaggle-deep amidst my 4 kids, you alone with a yoga mat slung over your shoulder.  You look startled by us, almost like I’m doing something wrong, but you can’t put your finger on it.  I simultaneously disregard a child’s pleas to purchase Cheetos, while gently reminding another to ‘make room for the world around them,’ as an old woman squeezes past our budding shopping cart.  I examine the contents on a label of jelly, and still manage to talk to you.  I know it’s a lot, but you could have just pretended not to see us.  Instead you ask, “Whoa, is it a school holiday or something?” One eyebrow rises, as you survey my brood. “Right?!” I say, chuckling, as if no one has ever asked me that one before, “They are homeschooled,“ and then under my breath, “they NEVER leave.”  You laugh and acknowledge my response to be inclusive with your own judgment. Now we can talk. “Shopping with Mom is actually a highlight in our homeschooling. They get to talk to strangers and even practice their conversation skills with humans of different ages,” (even the ones that don’t know that public school is a relatively new institution in the scheme of things). One of my middles steps on the shopping cart, causing one side to teeter and slam back down as she jumps off, startled.  I put a hand on her shoulder and bring my gaze to hers, “I asked you to stay off the cart. Please don’t climb on there again.”  This time you inspect us with two raised eyebrows and awkwardly move past while saying, “Okay… well, see you guys around.” 

I push on towards the produce, and remember a time when I wanted approval for my perfectly behaved kids.  But they aren’t perfect.  And they aren’t the only ones having a learning experience at the store.  Each time I feel defeated by a less than perfect scenario with my kids, I have an opportunity to make choices.  It used to be that I would chastise them in the heat of my humiliation. Later I reprimanded and then apologized for getting upset or raising my voice. After a while, I was able to talk to them without referencing any spectator’s judgments. I confidently know now that I can use my words with them just like I ask them to use their words with the world around them; politely. I’m a living example of the people I hope they will be.  That doesn’t mean that I’m always doing it right. I just know how to embrace failure and make that part of the brilliant lesson (that we’re all having) at the grocery store. 

-Emily