The Condition is Usually Not Serious – and other things not to say to women

funny-stork-baby-birth-control-vintageI’m not going to talk about my diet today. Well, not directly. One of the most important habits I took on when I changed my food was to journal my symptoms dutifully.  It’s great because if I choose one day to eat a buttery glutenous cinnamon roll covered in cream cheese frosting, I can consider in an experiment instead of a failure of my willpower. If I experience cramping or digestion issues the day after, I know my body does has a problem with those ingredients. If I start my period two days later, maybe that craving was a function of where I was in my cycle. I won’t call it PMS.

When your ute makes a demand, you make it happen.

 

No three letters can dehumanize a woman faster than p, m, and s. To say it is a stigma is an understatement. It is an assumption, a dismissal, and a punchline. Women’s menstrual pain is dismissed far too easily, even by health professionals.

You can see the dismissal even in the technical definitions. “Although some pain during your period is normal, excessive pain is not. The medical term for painful menstrual periods is dysmenorrhea”  Some pain is normal? “Dysmenorrhoea refers to painful periods, including severe menstrual cramps. The condition is usually not serious but it can be debilitating” (Menstrual Cycle & Irregularities). After the words usually not serious, no one hears can be debilitating.

I use the MedHelp application. It allows me to be startlingly specific about my symptoms (menstrual, emotional, pain, and nutritional) as well as my treatments (medications, supplements, baths) and have enough data to see patterns that I would not have found otherwise. The part that is especially important for me is their Pain Tracker. 

Seriously.

Because the 1-10 scale with smiley to frowny faces is so crude a representation it is laughable to those coping with any sort of pain disorder. Now I have a journal programmed with important varieties of pain (burning, discomfort, stabbing, hypersensitivity, twisting, cramping) as well as a body map where you can pinpoint the areas affected.

Are your periods normal? Sounds like a simple question. But it’s one that I hate the most at the Dr.’s office. What they’re asking is, Are they 28 days apart and result in moderate bleeding and bloating?  I wouldn’t be visiting a specialist if they were. The real question to ask is, What is normal for you? Frequency, duration, and severity are only three of so many dimensions to consider about the chronic injury that is menstruation.

I was spurred into this post after reflecting on a telephone conversation I had today with a nurse. She must check with my doctor before clearing me for a refill of my Vicodin prescription. I understand.

“Because, it’s highly addictive, you know.”

Yes, I know.

“We don’t want you taking it regularly.”

Yes, I know. I don’t want to, either.

“It says here you were going to do some sort of… pain management… thing?”

Oh yes, I remember. I was considering participating in The Violet Petal Study, a clinical trial of a treatment for endometriosis pain. I’m thrilled that this study has advertisements in the area via radio, TV, and internet. Based on my age and the course of my treatment I am exactly —exactly— the participant they want, and my doctor gave me her full support to enroll. 

But I have decided against it. I am desperate enough to try something experimental, yes. But I’m not desperate enough to gamble on a placebo that 1/3 of participants get. They would allow me to continue Vicodin for pain… but it’s highly addictive, you know.

The American sign language speaks the truthShe asked if my condition has improved and was appropriately concerned when I told her that in the last weeks, my pain has increased. She said she would call in my prescription and genuinely urged me to make an appointment right away, so my Dr. and I can do something about it. I broke a little inside. I was overcome with a feeling of futility all too familiar to women dealing with pain or infertility. 

I knew that rushed appointment would be just like my last in August, and the one before that, and the one before that; I’ve exhausted all my medicinal options, and considering the last time I had health insurance was 2009, I can’t afford to make an appointment, no matter how earnestly the nurse believes it will help (while knowing literally nothing about my history). I wanted to tell her, there is nothing to be done… but I don’t believe that. Once I get medical coverage, I want to explore surgery to remove one or both of my ovaries. But this means, once I get coverage, I have to find a new doctor. Mine refuses to jeopardize in any way my chances of getting pregnant, even though I’ve made it repetitively clear that I’m averse to the whole fiasco.

You’re still in your 20’s, you’ll change your mind. She specializes in infertility, so of course she is going to act in a way that protects my reproductive bits. Motherhood is magical, and it gives fulfillment to millions of people– but it is not for everyone. I’m just one of a growing number of women who are eschewing pregnancy and receiving incredulity and pity instead of support.

Childfree inspiration

The Childfree Life is gaining some public recognition, and I must further that conversation by continuing to say my piece. Armed with my symptom journal, sparked up over the Vicodin talk, and my feet firmly rooted in feminism, I came to write this post. I had to meander a bit, so thank you for coming with me. I’m nearly to the point.

And I am more than my illness.

I finally realized what I need to communicate on behalf of people like myself. When someone says you’ll change your mind, or keep your options open, all I can hear is I don’t believe you, and you don’t know what you want, or you’re not old enough to say that. Don’t protect me. Help me live in good health. Even when (especially when) it is scary and potentially involving scalpels.

Someone who seeks surgery (women like me for oophorectomies, men for vasectomies) is not taking the decision lightly. I have some rough numbers I want to give you, in an awkward attempt to say… forcing me to be able to carry a child is as cruel as forcing me to have one. How old do I need to be before I am taken seriously? Isn’t 35 about when they start saying you’re too old? Let’s go with that, say I wait until I’m 35 to prove I don’t want to carry, that’s 6 years. If my condition and treatments stay roughly the same as the last 6 years, what am I in for?  42 periods, totaling 270 days of bleeding, necessitating 120 Vicodin. Careful, it’s highly addictive, you know. My endometriosis pain is not limited to menstruation times. In addition to those numbers, I’ll face 420 days in pain severe enough to distract me from my tasks. This will require an additional 300 Vicodin. Round it all off with 1-2 laparoscopic surgeries, and what do you have?The fault in our starsCruelty.
Versus: One surgery, potentially liberating me from Vicodin, tampons, condoms, PMS….. oophorectomy is fun to say, but I’ll tell you one thing: it’s not habit forming.

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A woman who cuts her hair is about to change her life.

Maty says "Oh hi nice to see you!"

Maty says “Oh hi nice to see you!”

Maty has been absent from the blog a while, too. But that’s because he lives in Ashland and my camera does not have that good a zoom. I am here in Shakespeareville for Thanksgiving.

So I will admit that I’ve been eating everything my father-in-law puts on the table. I have enjoyed it all immensely. But I am seeing the effects on by body, which means two things. Firstly, that my dietary changes were working; Secondly, that when I return home I’ll be back on the quinoa and rice tortillas. Since I have some space from classes this week, I’ll spend some time talking about the foods I aught to be eating.

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This array represents the inspirational people I get to hang out with in class.

I basically covered the foods and ingredients that I’m avoiding. It’s much more fun to talk about what I’ve gotten to embrace.

The spiritual advice that my Dad has passed on to me is as simple as it is true. God was in a good mood when he made garlic. And onion. And beans. There’s something to that. Those are all beneficial to your immune system, and can block estrogen receptors so that estrogen-like things in food do not throw off your natural hormone levels. Eat more beans, carrots, broccoli, and kale? No need to twist my arm.

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Flax and pumpkin seeds, plus my pretty measuring spoons.

I have added some seeds to my diet. First was flax, which has gained a lot of popularity in recent years on account of high Omega-3 Fatty Acids, anti-oxidants, and fiber. Did I talk about fiber? I’m consciously seeking out fiber for my diet so that my bowels move with ease. The muscles that take care of #2 are dangerously close to the muscles that ache and cramp from endo. One caution: they do contain plant estrogen, which your body can interpret as your own, so I make sure not to eat them daily or in excess.

Surprise about flax seeds: when you finely grind them and mix with water, you’ve got a surprisingly effective substitute for eggs! I mean, in baking dishes, not as breakfast. There are conflicting reports about including eggs in an anti-inflammatory diet; most of what I have read is against them, and it hasn’t been a problem for me to eliminate them, so that’s where I fall on the question.

Next up was pumpkin seeds, which I tried because they’re crazy nutritious, but I didn’t expect to enjoy. People go gaga about roasted pumpkin seeds at Halloween, and I’ve never cared for them. I love smelling them in the oven, but can’t be bothered to eat them.  Step one to loving pumpkin seeds: buy them already shelled.

They are full of protein and reduce inflammation. They have a lot of minerals, which is another thing I didn’t expect. They even have tryptophan, that magical Thanksgiving chemical that promotes rest and lowers depression. So for those reasons and more, I bought a bag and came up with the perfect plan. If this didn’t make pumpkin seeds palatable, then it would never be.

I eat this now as a when I’m craving salty chips, I put it on salads, add it to dips, whatever. It’s fast and easy and is worth the effort to do it right. No substitutions, commit to the fancy stuff.

Try about a quarter cup of shelled pumpkin seeds, put into a saucepan or small skillet, on medium-high heat.
Add 1-2 teaspoons of avocado oil. Stir the seeds often. Watch for them to turn toasty colors, listen for them to get steamed up and start to pop.
Season with truffle salt. Try not to burn yourself when you can’t keep from waiting long enough for them to cool.

Third seed: CH-CH-CH-CHIA! I couldn’t help myself. And be serious, if you were writing this blog you’d say it too.

Chia seeds have similar benefits to flax: high in fiber, antioxidants, and Omega-3s; I hear they can also be used as an egg replacement. They’re full of good minerals (which I will elaborate on in Part 3 of this diet-blog business). For more info than you expected or will ever need, see here.

In the picture, the chia seeds on the left are hidden by the other delicious things in the mix I bought; it has slivered almonds, minced dates, hemp seeds, cocoa powder… See here for Chia Goodness. With this, I’ve been having pleasant breakfasts:

A couple teaspoons of the chia mix, a teaspoon of strawberry jam,
a dose of probiotic (I’ll elaborate later),
Add a splash of water or coconut milk, stir it, and go pour yourself a coffee. In a minute the chia seeds will start to expand.
Top with yogurt (Greek nonfat is best).

And maybe some granola or rice cereal on top for crunch. You know, like a parfait–but with lots of protein, fiber, minerals, and little fat.

Here’s a word loaded with sensory memories: cheese. A dear friend of mine for years–we do visit every few weeks or so now when I find brie in front of me. Instead, I’ve been using Daiya “cheese,” and I’ve been really happy with it (except the provolone–that one’s sub-par).

Pictured to the right of the Chia Goodness are dry sprouted lentils. Lentils have a lot of the same anti-inflammatory benefits of beans– particularly the fiber–but I don’t feel compelled to eat them often. Either they are too hard/undercooked or fragile/overcooked. Sprouted lentils have been gaining popularity for their particular properties. If you wish to get technical in comparison, I direct you here. I do not know how much drying the lentils affects the nutrition versus fresh. But these great. You can soften them just by placing in water or soup in the last minutes. I think I’ll try seasoning and toasting them one of these days.

wpid-20131110_112043.jpgAnother something that is going on: I have art up at Latte Play in Salem. Best part is that I have FINALLY gotten to hang my Gigantic Koi Painting. So go marvel at that and have a latte. See Masterful Matilda and Animal, shown here. But there is something shown here that is no more.

It finally happened. I grew hair long enough to donate, as long as I could stand for it to be. But it had started strangling me in my sleep. It broke the vacuum. It had to go.

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So thanks for the line, Coco Chanel. My life has definitely changed.

A brief venture into the diet-blog genre

The newest sign that I’m kind of a grown up: adopting (and sticking to) a diet. It’s been about 6 months and I’ve lost about 8 pounds. I feel better, almost all my clothes fit, and people have noticed the difference. People have been asking questions, and this is the best route for me to give context and facts for what I’ve been exploring and experiencing. Although it is the most visible effect, losing weight was not the principal goal in changing my diet. It’s another strategy I’m employing in my ongoing battle with endometriosis.

susan sarandonIsn’t it silly that we need to be reminded this? But that’s fodder for another post…

Today is Part 1 of my Endo Diet. Here’s the information that made me willing to give up cheese and bread which I could (and have) lived on exclusively. It’s closely related to the anti-inflammatory diet that has gained popularity with arthritis sufferers. First it starts with a wee bit of science: Prostaglandins.

Prostaglandins are lipids made in your body when and where they are needed, in response to an illness or injury. Here’s the quick and dirty on them in the general health and wellness sense. They are obviously important little helpers. Here’s the short-story-long about their connection to dysmennorhoea. But for my purposes, here’s the gist:

They control processes of inflammation, redirecting blood flow, the formation of blood clots. You know, the Unholy Trinity of Womanhood.

They control ovulation, menstrual cycling, and induce labor. You know, the Gauntlet of Womanhood.

for dummies

Have I mentioned this? I read it. I loved it.

So, they’re useful and necessary and helpful for recovering from injuries, be them occasional like a bruise or recurring like menstruation. Eventually, your bruise heals and the swelling goes down. Your period ends, the bleeding stops, the cramping stops. What I think of as the good prostaglandins step in to inhibit the inflammation, they tell your muscles to relax.

With endometriosis, I’m sort of always injured. I may not always be bleeding, I may not always be hurting but those growths are always there, and my body always knows they shouldn’t be. So the prostaglandins are telling my guts to cramp (get rid of those clots!) and my abdomen to swell (to protect from the angry ovaries!).

How do you try to control something that your body creates naturally? Turns out that diet can make a big difference in two ways: limiting things that excite the prostaglandins responsible for inflammation, and adopting things that help your body inhibit inflammation.

Since they are lipids, your body makes them out of fat. The first thing to change in my diet was fat.

None trans fats. That’s an easy enough one to avoid with anything that comes with nutrition facts and everyone knows they are unhealthy. Saturated fats are to be avoided too, I haven’t been able to eliminate them, but I’m choosing them differently. Dairy is almost totally out, because it heightens your body’s inflammatory response. (I rock fat free Greek yogurt though, for protein and live cultures for digestion) I’ve actually gone for months now without any butter, and rarely vegetable oil.  I have adopted avocado oil for cooking, it’s full of great things. I’m using coconut oil for baking and damn near everything else because it’s perfect for… DAMN NEAR EVERYTHING.

champagne diet

Soy. This one I really have eliminated entirely, because it’s easier to avoid than you might think. And there are many more reasons to do so than you might think.

Soy is high in phytoestrogen, which for purposes here you can just read as estrogen (but please read more because it’s kinda fascinating). My body is super sensitive to estrogen. I don’t want to put any in it, like, at all. This property of soy can inhibit your body’s absorption of calcium, magnesium, and iron. These are crazy-important for women with cramping and bleeding. It can raise your body’s need for Vitamins D and B-12.

Gluten. This one is getting easier to avoid because people are so much more aware of gluten allergies and intolerances. Women with endo seem to be a little more prone to gluten sensitivity. Either way, processed flours and wheats contain phytic acid that can aggravate cramps. It’s with reluctance that I avoid bread, but it has given me the reason to try pumpkin seeds, flax, hemp, and chia seeds.

no soy no gluten protein

I’ll rave about these things in Part 2

Red meat: not all that hard for me to eliminate. I’ve never been into burgers. Steak only excites me if it’s super high quality slabs of heaven that was grass fed and smothered in a wine reduction. That is an exception to my diet I’m willing to make, because grass fed is not only delectable, it’s better for you. Note the Omega-3 and antioxidants.

Sugar–Another that is getting easier to avoid, but I recognize it’s going to be a long process for me to be close to sugar-free. A sugary diet can heighten your inflammatory response. I’ve adopted coconut sugar for my coffee and baking. Stevia is too sweet for me, agave gives me a tummy ache. So I’ll stick to coconut sugar, honey, and maple syrup.

Corn has been a bummer–I can eat myself stupid on Juanita’s corn tortilla chips. My first summer without corn on the cob since the days when I had braces. I’ve pretty well cut out eggs, as well. Both of them can worsen inflammation in your body.

So there’s the over-view of what I have cut out or limited. I’ve already acknowledged I’ve dropped some weight. But has it helped my endo symptoms?

Yes. I am confident in saying that it has helped. I am not cramping on a daily basis anymore. I’m with Susan that it’s not OK yet, but for me to have days at a time free of cramping is a damn fine step closer.

I hereby declare this blog officially Not Dead

Oh hello friends! I sincerely apologize for taking so many weeks off. In that time, I assure you I have been busy.

I completed another lap around the sun.

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LET US EAT CAAAKE

I saw my brother-in-law graduate from the Willamette University School of Law.

Rob's graduation card from Matilda.

Rob’s graduation card from Matilda.

for dummiesI read this book. Officially there’s a Dummies book for everything.

autoimmuneIt’s not the first book I’ve picked up about Endo, but it’s the place where I have learned the very most. There are surgical options I did not know about (duly noted for when I see my Dr. next), tons of information on all the symptoms and causes for them, approaching it as an autoimmune problem, and even has a chapter for your loved ones– on how to best support a woman with a chronic pain disease that you cannot see. I learned just how typical I actually am. It seems to particularly afflict taller-than-average, thinner-than-average ladies, with certain kinds of moles, it is often first misdiagnosed as Irritable Bowel Syndrome, and it takes on average 7-10 years for a woman to get the right diagnosis. I’m tall, all kinds of moles, and I had pegged my diagnosis time at about 8 years (all the way through high school and college) but the bit about Irritable Bowel makes me re-evaluate. See, I missed half of 5th grade at home with IBS. And if that was indeed the earliest of my endo, my diagnosis took closer to 12 years.

In March, I adopted the Endometriosis Diet. You can also look it up under “Anti-inflammatory Diet.” I am thrilled to say it has helped, I am no longer having cramps every day. Isn’t that a melancholy place to be– where victory isn’t ending pain, it’s getting through one day without it. I’ve got lots of more observations and information here.

Lastly, I’m sure you’ve been craving Matilda pictures. I just got a smart phone (Woo hoo Galaxy S4!) so now I can use it to take decent pictures when my camera is not handy. Like this one:

peekabooHappy napping!

Another from the blog that defies categorization– art, booze, and levity in the face of pain

bacon maple crayons

Hello again friends! I’m leading today’s post with this picture because I know many of my readers get excited about the same things as I do: beer, crafting, bacon, maple, and doughnuts. All inside a pink bottle? That’s more Portland than a rose tattoo on the arm of a hipster wearing your grandpa’s clothes stuffed inside a can of PBR sitting next to a pack of hand rolled Top tobacco cigarettes.

Let me unravel this for the uninitiated. Voodoo Doughnut is one of this town’s crown jewels, and one of their specialties is the Bacon Maple Bar. People are sometimes skeptical of bacon on top of a doughnut but I assure you: it. is. uh-mazing. Rogue is another institution of this fair city. Reflecting our citizens’ inability to keep our vices separate, Rogue created this ale in honor of the doughnuts. This means we can drink it with breakfast.

crrrayonI’d like to say it was magical… but really it just tasted like campfire. I couldn’t pick out bacon and maple flavors, it’s all pretty well dominated by the first three ingredients: cherrywood smoked malt, beechwood smoked malt, and house-smoked hickory malt. So maybe it wasn’t a turducken of holy flavors, but now we know. We had to know.

A couple weeks ago I had the opportunity to share Voodoo Doughnuts with big group of people from Boise. My brother happens to roll with a pretty well-spoken crew. Below is a note card I grabbed from the floor when I was with them (next to a nice little unrelated drawing I made).

russia meteor

If after reading this, the words “impromptu,” “extemp,” “debate,” or “forensics tournament” pop into your head, I award you 12 speaker points. If this is completely nonsensical to you, then consider this a glimpse into university speech and debate. My brother is a member of the team at College of Western Idaho, and will be traveling with them this week to compete on the national level. So here’s my shout out and wishes of good luck to CWI:

unicorn someday

Even if you feel like this…

unicorn

really you’re like this.

When you get nervous, smile like you know something they don’t. Idahomies, represent!

I honestly don’t know how to transition from unicorns to the other topic-of-the-day, so this awkward sentence will have to do.

This month has been designated to promote awareness of endometriosis.* This one hits home for me. By hits I mean stabs, and by home I mean abdomen.

Endometriosis, or, My Angry Ovaries

Endometriosis, or, My Angry Ovaries

I suffered for 10 years before the right diagnosis. I’ve had 2 surgeries to remove growths and likely face a 3rd. I’ve exhausted hormone adjustments and pain relief options. All of these facts are alarmingly typical for endo sufferers. I’m lucky in that I have had emotional support–far too many women face this surrounded by people who think it’s all in her head, she doesn’t look sick, it’s just her period. If you’re interested in a longer narrative on an all-too-common story, I offer this Letter to Endometriosis.

pretend they work

I did not make this image, it was already out on the internet representing waaay tooo many women.

Well, that seems like enough diverse topics for one blog post! Up next will be some new art (gasp!) and probably some more tales from the Endo Life (I didn’t choose it, it chose me!). For now I thank you again for reading and I offer my honest intent to be back before the end of the month.

*In fact, as I write this my spell-check is insisting endometriosis, endometrial, and endometrium are not words, although it has all of the following in its vocabulary:  appendicitis diabetes thrombosis mononucleosis sclerosis apoptosis osteoporosis anthropomorphic epistemological

Now I want to see a short bus full of 100 monkeys.

Number 1 News: I have a painting on display in public for the FIRST TIME, as part of a group art show at the 100th Monkey Studio. I am thrilled, and the show is opening tonight. I am really interested in seeing the art from the other contributors, and to see how my painting fits among them.

This art show is the studio’s 5th Annual art show
featuring the art of Creative Arts Therapists.
March is Creative Art Therapy month nationwide.
Creative arts therapies have been practiced
in the United States for over 50 years to benefit people of all ages
and various physical and emotional life challenges.
This practice emphasizes the process of self-awareness that takes place
during therapy and includes art therapy,
dance/movement therapy, drama therapy, music therapy,
poetry therapy, and psychodrama.

When I drove to the studio to deliver my painting, I had a peculiar drive in our Peculiar PDX. As I approached the freeway entrance ramp, I saw a man crossing the street in my direction. He was in the blackest black suit, wearing the blackest black fedora with a blood red sash, holding a black-ety-black umbrella straight up with such precision it looked mechanical. He was accessorized with a red tie and red gloves. He walked steadily and straight as an arrow, diagonally across the street and the entrance ramp, without so much as looking up or down the street. So eerie, so strange. I have concluded that I witnessed a glitch in The Matrix. Or that I live in Portland.

I wish I could put a bird on his umbrella. Then he’d be performance art.

Mere minutes later when I pulled up to a bottleneck situation on the Morrison Bridge. When the hazard lights came into view, I could see the hold up was caused by a school bus who had pulled as far out of the lane as possible, but it still reduced the Northbound I-5 traffic into one and a half lanes. Tough place for a bus to break down. It wasn’t until I was passing it that I realized it was a short bus! There’s no good place for a short bus to break down.*

Sadly, it was not this bus.

Wish I could put a bird on it, then it would be public art.

I will shortly have pictures to share from the gallery, and I have some thoughts to share that have been forming in the week that I spent substituting in a high school Biology class. One big difference between high schoolers and the shorter ones is that high school students get excited to talk about coffee, tattoos, and my pearls of wisdom on the parenting habits of kangaroos and the evolutionary connections between wolves and whales.

That’s what you have to look forward to! Happy Friday, I hope your weekend is better than the weather around here. I had a daisy bloom in my kitchen window pot, just in time for several days of snow. It was a very confused daisy.

*There were no kids left on the bus, but for comedic purposes let’s envision the students eating the seats.