A Message to my Endo Sisters

In light of a very misogynistic article claiming that women with endometriosis can heal themselves of their disease by reconnecting with their womb, I feel the need to send out a message to my Endo Sisters. Rather than drive up traffic to the offending article, I'd rather speak directly to others who have been demeaned and demoralized. I have had this letter in some form for a while, but now feels like the right time to get it out there and let them know that they are strong, creative, determined, inspiring women no matter what anyone tries to tell them. 

Ignore those who do not understand, and fight for what you know to be true. 

*** 

Dear Endo Sisters,

Your disease does not define you.

Your disability does not define you.

Your body does not define you.

YOU define you.

Of course, your body is a big part of your life. It is the vessel that carries you throughout your time on this earth. It is what you leave behind when you die. Your experiences on earth are shaped by how your body exists. Your genetic makeup, what you eat, how you make your living, where you live. Many of the choices that you make, opportunities that are available to you, and obstacles that you must overcome are affected by your body.

But that still does not define who you are, or what you are capable of.

This is not something that I have always known. This is not a truth that I was taught, or something that I heard that I thought was valuable. This conclusion became clear to me after 10 years battling physical obstacles, and thinking about experiences that are familiar to millions of other women. This one truth, that who you are in your soul defines you above all else, came to me after some of my darkest days living with Stage IV Endometriosis.

In July 2012, I was surgically diagnosed with then-Stage III endometriosis after a large endometrioma required laparoscopic surgery. I had been tentatively diagnosed for years, enduring severe physical side effects from suppressive therapies, meant to stop my body’s natural cycles and prevent periods. I listened to my doctors, never questioning that the treatments were right for me. After my surgery, I was put on another round of Lupron treatment, a drug that was developed for prostate cancer, but is widely used to suppress ovulatory function in women with endometriosis. When it was found that this drug caused bone loss in my spine, my doctors told me that I had no other options, and that if I wanted to get pregnant, I had to do it now.

Not long after, I was given the fertility drug Clomid to jump-start my ovaries, which were not functioning after years of suppression. This dramatically flared my disease, leaving me in intense, daily pain. I was unable to keep up with the coursework in my graduate program, and barely able to work 20 hours a week. I took medical leave from school, and begged my doctor for another surgery.

If ever there was a time when my body defined who I was, that was it. Every waking moment of my life was consumed with thoughts about my growing disease, my desperation to get pregnant, and my growing hatred for the body I was stuck with. How could I be so sick? How could I be so weak? That was not who I felt I was inside, and I grew to hate what I saw in the mirror: a very, very sick person.

This stupid, pathetic body was getting in my way, making me irritable, unfocused, incapable of following through with my commitments. I could barely get myself dressed and accomplish a few chores without needing to rest for several days. The worst part of this was that I started identifying who I was on the inside with what was happening to my body.

My doctors’ aggressive approach to fertility made me even angrier, and I began questioning their recommendations to push forth with In-Vitro Fertilization, rather than having another exploratory surgery. How was I going to be a mother when I didn’t even have the energy to take care of myself? And how would my body handle the daily fertility drugs when it reacted so badly to smallest dose before?

I had read about excision from another endometriosis patient years ago, and decided to look into it. Excision surgery is a method of cutting the disease out like a cancer, rather than suppressing it or burning just the surface of the disease, while leaving the rest behind to grow again, as mine did. I did nothing else for almost a month, learning everything I could about excision, and joining online communities for women with Endometriosis. Finally, I found a surgeon who said he could help me, who seemed to truly care not only about my body and what was happening to it, but what I wanted to accomplish as a person. I booked my out-of-state excision surgery for June 2013.

Dr. Yeung found the cause for all my pain and infertility: advanced Stage IV Endometriosis, binding my pelvic cavity into a jumbled, inflamed mass. Every organ was covered in adhesions and endometriosis lesions. He removed 20 abnormal tissue samples, 18 of which pathology confirmed as endometriosis. My appendix was folded in on itself and had to be removed. My reproductive organs were out of place. My ovaries, which each contained an endometrioma, were adhered to the back of my pelvis, behind my uterus, and one fallopian tube kinked shut. My bladder was beginning to fold in on itself, and my rectum was glued to my vagina with dense adhesions that was causing my intense pain with sitting, going to the bathroom, and enduring exams. My bowel had several lesions that may require a future bowel resection, and my ureters had significant scar tissue, or retro-peritoneal fibrosis.

Had I not advocated for myself, had I followed my gynecologist's advice and not had excision surgery, I would have been at risk for life threatening bowel obstructions and kidney failure.

After I awoke from surgery, my husband gave me a packet of pictures taken by my surgeon, and a recording explaining each photograph, and my diagnosis. Tears streamed down my face for all that my body had been through. Tears of sadness and relief.

My body was not weak.

I was not exaggerating my pain.

My body was sick. Very, very sick.

In the months since my surgery, my body has amazed me. It has shown the strength, endurance, and power I felt inside, but could never seem to show the world. Each day that I do something I couldn’t have done six months ago, or even 10 years ago, I marvel at it.

My body is not weak.

I am not weak.

I am a strong person, filled with determination, passion, and commitment.

I am a person with a terrible disease. But it does not define who I am.

Now that I know this universal truth, that your body, disease, disability does not define you, I am so much happier and grateful for my life. I know that I live with this disease, that it affects what happens to my body and how my body functions, but I will never again believe for one second that it reflects who I am inside.

And neither should you.

You are not your body. You are not your disease. You are not a collection of symptoms.

Many people may judge you by your body, by its shortcomings, or try to say that you are defined by your symptoms. Some preposterous people may even try to tell you that you caused your disease, that you have this disease because of some kind of emotional imbalance, that you can cure it by loving yourself more, or getting in touch with your uterus.

I’m here to tell you not to listen.

You are not a whiner. Your body is sick.

You are not lazy. Your body is tired.

You are not a burden. Your body needs help.

You are not doomed to a life of suffering. You need a better treatment. You need a true endometriosis specialist, one that can effectively perform excision surgery and recommend complimentary services, like physical therapy and nutrition.   

You are a person who deserves respect, admiration, a chance to be everything it is you want to be. You are a person who has fought your entire life to show the world who you really are, despite obstacles that are set in your path. A person who deserves the proven treatment, a chance at a full life. Endometriosis does NOT resolve on its own, nor can it be cured with hormonal suppression, GnRH agonists and antagonists like Lupron and Elagolix, or by wishing it away or reconnecting with your uterus (if you still have one). You deserve better than companies and individuals who would prey upon your suffering for their own profit. You deserve medical professionals who are trained and educated about your disease, who will listen to your symptoms and can identify the real problem, or find someone else who can. 

You, the strong, the incredible, the determined, the loved, and the devoted.

Now is the time to show the world what you are capable of, and fight for the chance to achieve it!

Keep fighting! Let’s get our voices heard!

For more information about endometriosis, excision surgery, nutrition, and the Million Woman March, please visit the following links:

Endometriosis Research Center

Center for Endometriosis Care
SLU Center for Endomeriosis

Endometriosis Morbidity: can it be prevented with early diagnosis and complete excision surgery

endometriosis.org

The Nutritionista

Ask Me About My Endo

PERFECT Gluten-Free, Sugar-Free Nut Butter Cookies

Sorry for the potato of a picture...I was too busy gobbling up these delicious cookies (for dinner, no less!) to reach for the SLR. I've been on my Endo Diet for about a 5 weeks now, and I've done pretty well sticking to it. No gluten, dairy, soy, chocolate, sugar, caffeine, or alcohol. I typically eat fruit if I get a sweet tooth, but tonight...fruit just wasn't cutting it! So I whipped up these tasty treats with what I had in my pantry, expecting them to be pretty boring and unsatisfying. Low and behold...they're amazing! Here's the recipe. 

Perfect Organic Gluten-Free, Sugar-Free Nut Butter Cookies

Ingredients:

2 1/2 cups gluten-free oatmeal

3 tbs gluten-free flour (almond, coconut)

1 cup nut butter of your choosing (watch out for soy if you have endo!)

1 cup coconut oil

1/2 cup raw honey

1-2 tbs agave nectar

1 egg

1 tsp vanilla extract

1 tsp baking soda

pinch of salt

Directions:

Preheat your oven to 375*. Prepare two baking sheets with non-stick spray, or a thin layer of coconut oil. Run the oatmeal through your food processor for about 2 minutes, pulsing occasionally to ensure all oats are processed. This should look like a rough powder, not as fine as flour, but as fine as you can get it. Toss in the flour, salt, and baking soda. Pulse to combine evenly. Set aside. 

Combine the coconut oil, nut butter, and honey in a large bowl, and mix on medium speed until creamy and well incorporated. Add the egg, agave, and vanilla, and mix on medium until smooth.  

Add the dry ingredients in 3 batches, mixing on low-medium speed. When finished, the dough should be soft, but moldable. Use an ice cream scoop to portion out 12 cookies, evenly spaced on two baking sheets. Bake for 13 minutes, rotating for even cooking. 

Allow to cool on a cooling rack for 10 minutes before devouring! 

A Day on the Endo Diet

When I first decided to tackle a major diet change, I was intimidated, anxious, and a little indignant: why should I have to restrict myself so much? That's not fair! Well...now that I've put in a couple of weeks of change, my body looks and feels totally different. Ok...so maybe it is worth it. And to be honest, it wasn't that hard! The biggest difference I've noticed is a more regular...ahem...digestive system, and a huge decrease in belly bloat. I can't say for sure what exactly this is a result of: less inflammation, 5 lbs of weight loss, less...ahem...digestive trouble. 

Whatever it is...I feel this diet is doing something good for me. So I'd like to share what a day on this diet looks like. (Shh...it's not all bad!)

A Day in the Life without Gluten, Sugar, Soy, Dairy, Chocolate, Caffeine, or Alcohol

Breakfast:

This is the biggest change for me. I'm not a morning person (blame persistent nausea, fatigue, and back pain), and I am not known for waking early to make a big, healthy breakfast. However, on this diet, I can't eat what I used to have for a quick, on-the-go meal: cereal, yogurt, waffle, donuts! None of my go-to foods. So, I've made the commitment to wake a little early and make myself something healthy. This typically includes (all foods organic):

1 serving of gluten-free oatmeal made with rice milk

a handful of fruit (berries, peaches, banana) 

wild, raw honey to taste 

1 cup of fresh-brewed decaffeinated tea (usually herbal)

Lunch:

This wasn't a hard change. Lunch is typically my throw-away meal anyway, since I'm either running after kiddos, or busying myself with sewing or projects at home. My lunches are usually fairly small. Also, if I'm home, I sleep in pretty late to make up for my fatigue and exhaustion from work (hopefully this will change after my surgery!). So I usually eat a good, late breakfast, and don't need a big lunch. So I usually eat:

fresh veggies with hummus

fresh fruit

home-made granola or gluten-free muffin

nuts

OR

leftover dinner from the night before

Dinner:

This is the meal I actually don't usually cook. I've been so exhausted lately that by the end of the day, I'm done! We try to make large meals that can be eaten the next night, or as lunch. I've been known to make a crock pot meal and eat it all week. If you don't get tired of leftovers, it's a great way to take advantage of a good day when you have energy and make a great, big meal that can be picked on for several days. There are a LOT of foods that follow the diet, and I try to make sure my dinners include 1-2 types of veggies, a protein, and a grain or bean. Here's a list of foods we might eat separately or prepared in a stew, casserole, or stir-fry:

steamed veggies, like broccoli, corn, carrots, squash, parsnips (I like to microwave corn in the husk...it steams itself in 3 minutes!)

organic beef, turkey, or chicken (organic is super important, especially for chicken, at least with endo)

gluten-free grain, such as rice, quinoa, barley

beans

gluten-free pasta (I like to make a creamy sauce of avocado, basil, lemon juice, and a little olive oil)

I also snack on nuts and fruit when if I get the urge during the day. I allow myself to have honey or agave as a sweetener, and because I have to drink baking soda each night, I don't restrict myself from drinking juice or diet sodas. I use my Soda Stream to make sodas at home, and I try to drink 100% juice with no added sugar. 

Do you have any great recipes that follow the diet? Feel free to follow me on Pinterest as I grow my inventory of great tips and meal ideas!

The Endo Diet: Lemon Poppy Seed Blackberry Muffins

I recently began following the Endo Diet, after reading Dr. Cook's book Stop Endometriosis and Pelvic Pain. I had thought about the diet before, but it wasn't until reading exactly why the diet is suggested that I decided to give it a try. The Endo Diet cuts out inflammatory foods, that could add to a inflammation caused by an existing disease. It also cuts out foods that would increase the amount of estrogen in the body, which feeds the disease. The Endo Diet involves cutting out gluten, soy, dairy, sugar, chocolate, caffeine, and alcohol. It also involves eating organic foods as much as possible. Talk about a BIG change! I'm two weeks into the diet, and I'm finding it doable. I allow myself honey and agave as sweetener, decaffeinated tea, and fruit juice or diet soda for my kidney treatment, which is drinking a teaspoon of baking soda a day. That is the only thing I won't give up. Do you know how terrible baking soda tastes? I have to have a decent cover-up!  In any case, today I made a couple snacks that follow what I call the "No Fun" diet. I thought I'd share the recipe for the Lemon Poppy Seed Blackberry Muffins.

I adapted them from this recipe from The Lemon Bowl. They turned out fairly good, considering that there wasn't any sugar or butter. They are a little drier than I am used to, so next time I might add something like applesauce or banana to give them a bit more of a moist texture. With a little sugar-free jam, I bet they would be fantastic! Sadly, I have none. :(

The Endo Diet: Lemon Poppy Seed Blackberry Muffins

Ingredients (all organic): 

2 cups gluten-free flour (I used Trader Joes' brand)

1/2 tsp baking soda

1/4 tsp salt

2 eggs

2 egg whites

1/4 cup raw wild honey

2 tbs coconut oil

2 tsp vanilla

zest and juice of 1 lemon

1 tbs poppy seeds

1 cup blackberries

Instructions:

1. Preheat the oven at 350*.

2. Whisk flour, baking soda, and salt in a small bowl. Set aside. 

3. Combine eggs, egg whites, honey, coconut oil, vanilla, lemon zest, and lemon juice with a mixer until well incorporated. 

4. Add the dry ingredients in 3 batches, combining well each time. When batter is smooth, add poppy seeds.

5. Fold in blackberries and ladle evenly into muffin pan. My mixture made 10 muffins, filled almost to the top.

6. Bake 25 minutes, or until a toothpick comes out clean. Cool, and enjoy!

Train Conductor Vest

I recently bought Oliver and S Little Things to Sew, and the first pattern I tried out was the Explorer Vest. Her version is so cute and whimsical...all teal and yellow and so perfectly vintage. One of the little boys I take care of is really into trains, as many little boys his age are. I told him I wanted to make him a vest, and together we came up with the idea for the Conductor Vest. I chose a grey pinstripe I had from a dress idea that I never got around to, and incorporated his favorite color: red!

I had the red lining left over from my attempt at making holiday bears a couple years ago (wow...a couple years ago. Sheesh, time flies!). The pattern doesn't call for lining fabric, but I wanted to give the vest a special touch!

I think it is perfect for a little conductor! He likes to pretend he is taking us to the North Pole on the Polar Express. :)

I added his formal title to the back pocket. ;) Sorry for the photo quality...hubby was switching lenses on his camera, so I had to use my phone.

I didn't have any bias tape, so I tried using ribbon instead. While very cute, it didn't work that well around the arms. Trying to mend that this weekend, since it started pulling away when he wore the vest. Overall, the pattern was pretty easy. I adapted it a bit to how I wanted to use it, but I definitely recommend checking out the book. There are some really cute ideas!

The Nanny Bag Tutorial

It's here! The tutorial! It's a long one, and to be honest, it was a long process, but it was completely worth it to have a custom designed bag. I used it yesterday, and man...there is no purse better! And it is a lot better than the diaper bag I was using, which was too small with too few usable pockets. See, that diaper bag had elastic pockets on the inside, which took up room from the interior space. I ended up piling stuff on top of stuff, which made it difficult to access and find everything. My bag has elastic pockets on the outside, and flat pockets inside, in the attempt at efficiency. So far, so good! When you make your bag, think about the things you carry with you, and customize the pockets accordingly. Here's how I packed my things yesterday:

I packed: sunscreen, my lunch/snacks (not shown), multiple drinks (shown here with my things, but in reality, I packed the kids' things when I got there), sunglasses, Purell, a sweater, my medication pack with Epipen/benedryl, feminine products, keys, lip gloss, a pen, an iPad, wallet, comb, and diapers. Plus, when I got to work, I packed the portable collapsible potty, extra snacks, extra pants/underpants for the 3 year old, and still had room to spare! I made my bag with a cross-the-body strap, because I find that the most comfortable option, and it leaves me hands-free for pushing strollers, holding hands, or running around at the park. 

Obviously, the "Nanny Bag" is a great diaper bag for anyone chasing kiddos around, so if you're a mom, dad, grandparent, older sibling...whatever! This is a great bag for you. ;) So here we go.

The Nanny Bag

You will need: (all measurements are approximate)

1 yard each of exterior, interior fabrics, and pocket lining

3/4 yard exterior pocket/strap fabric

2 yards fusible fleece

contrasting thread

contrasting 14 inch zipper

Cut your pieces. All are simple rectangles. You'll need:

19.5 x 13.5 inches - front and back

fabric A (x2), fusible fleece (x4), fabric B (x2)

19.5 x 6 inches - bottom

fabric A (x2), fusible fleece (x2)

13.5 x 7 inches (to allow for expansion) - sides

fabric A (x2), fabric B (x2)

27 x 8 inches - elastic exterior pockets

fabric C (x2), fabric D (x2)

19.5 inches elastic (x2)

8 x 7 inches - side pockets

fabric C (x2), fabric D (x2)

19.5 x 11 - interior pockets

fabric D (x4)

39 x 2.5 (or more) inches - strap

fabric C (x2), fusible fleece

19.5 x 9 inches - removable pouch

fabric A (x2), fabric D (x2)

I didn't use interfacing, I just went with the fleece. In retrospect, it would have been useful for when the bag is not so full, and should I make another, I might use it. When I looked at other DIY diaper bags on Pinterest, I kind of liked the ones that were softer, and this one really does feel nice and comfy. I'll update you if I decide I can't stand the soft version, but so far, I love it! So...just the fleece to fuse! 

Attach your fusible fleece to all applicable pieces: front and back, bottom, and sides for exterior and interior of the bag. Place the fleece on the ironing board, glue side up. You're going to attach it to the back of your fabric, so place your fabric right side up on top of the glue-side of the fleece. Next, using the steam function, heat set for the fabric type you're using, steam and press. My fabric was a heavy polyester...I ended up using a setting that was slightly hotter than would have been recommended, because it didn't seem to be penetrating through to the glue well. It was tricky to do this and not harm the fabric. Gentle touch!! I also had to iron again to making everything nice and smooth. Anyhoo...allow it to dry/cool, and you're ready to roll. 

Trim any extra edges.

Next, start construct the exterior pockets. Sew the exterior pocket fabric and lining, right sides together, leaving a small opening to turn inside out later. 

Before turning inside out, sew your elastic to the two ends at the top of the pocket.

Here you can see it attached. The elastic is only sewn into the the edges, since you will be turning it inside out and top stitching to create a band. There are several ways to sew elastic into a garment. In waist bands, I make a pocket, then thread the elastic through. You could do that, or you could sew with elastic thread. This is just how I did it in the moment, and it worked pretty well. 

Clip the corners...

...and turn the pocket inside out. I leave mine fairly small (perhaps I like a challenge!), but if you want an easier time turning inside out, leave a larger space.

Sew the opening closed.

Press your seams, and your pocket should look something like this.

Next, top stitch to the left of the elastic to create a band and keep the elastic in place. Be careful not to sew over the elastic. It should be able to stretch freely. 

You'll need to hold onto the end of the elastic to keep things straight. Stretch as you sew.

Your finished pocket should now look like this!

Now, you're going to decide your pocket placement. You can play around with how many separations, how big they should be, how high or low to place them. I left a couple of inches at the bottom, with my pocket sitting somewhat lower than the center. I used a water bottle to help me create sizes for two pockets for bottles/drinks, and left a larger pocket for snacks. You will pin vertically where you want your pockets separated, and  top stitch along them. I added red lines to help show what I'm trying to explain.  

You can see how I pinned the outer edges first, pinned vertically where I wanted the pockets to separate, and pleated the bottom of the pocket so there would be room for expansion. 

Sew along your pins. Now your exterior back and front are done. 

 The side pockets are the same basic construction without the elastic. Sew the exterior and lining right sides together, leaving a space open, and turn inside out. Press the edges, and sew onto the side panels. You could mark off pockets for items you typically carry, likes keys or phone.

Next, we're going to construct the exterior of the bag. Pin your bottom panel to the bottom of the front panel, right sides together. Sew, and repeat with the back.

Opened up, it should look like this.

Do the same with the side panels. It will look like this when it is flat. Here's a makeshift diagram on where to sew! (Isn't it terrible helpful?!?!). Press the seams open when you get to this step.

The trickiest part was sewing the bottom to the side panels. Maybe another blogger can be more helpful, but I just kind of pinned and did my best! :) Where there was extra fabric, I just pleated it a little. 

Make sure to pull the corners out a bit so that you don't sew it by accident and make more work for yourself picking seams!

Here, you can see the little pleat at the bottom of the side panel. This just gives more room for expansion. 

Your bag should look like this! You'll turn it right-side-out so it will look like this:

You can see how soft it is...like I said before, interfacing will give it more structure, if that's what you prefer.

Now we will construct the interior. For the flat pockets, sew the two layers right sides together, leaving a space for turning inside out. Press the seams, sew vertically to separate the pockets, and you're done.

Construct the interior using the same steps that you used for the exterior.

I saved myself a step by not sewing the sides of the pockets until I added the side panels, but you can sew them first if you want to. :)

To construct the strap, you will have one long piece fused with fleece, and one that is not. Sew the two right sides together, leaving a large space open to turn inside out OR sew one side together, open, and top stitch. I took the tougher road and turned it inside out. It took a while, but I like the look. It's lofty and soft.

Now it's time to sew the exterior to the interior. It's a tricky part to explain...I hope it makes sense.

Pin the exterior and interior at the tops, right sides together. The easiest way I found was to keep the interior inside out, and place the exterior inside, like this.

You'll need to pin the strap to the side panels, like so.

It should look like this when it is all pinned. If there is extra fabric (like mine), simply make tiny pleats where necessary. 

Leave one side panel open. This is how you will turn the bag inside out. You could leave any part open, I decided the side would work for me. 

Pull the bag inside out (or right side out, I suppose), and push the interior inside the exterior. It should look like this.

Here's the open side. We will sew this closed. The corners were too thick for my sewing machine, so I sewed those by hand with a hidden stitch.

Pin the strap inside, fold the edges inside, and top stitch. You will top stitch around the top edge of the entire bag, so it will all look uniform in the end. 

And your Nanny Bag is finished! If you're not completely exhausted, there's one more thing to make: the removable pouch.

I used the exterior fabric and the pocket lining (because I had a ton of these fabrics). I made more work for myself that necessary by sewing the sides and lining together first, then putting them together. This was because I didn't want any rough edges. So...you'll basically make two panels like we constructed the pockets. There are probably a billion other tutorials for making pouches and purses, but this was just a last-minute addition, and I winged it!

After you turn them right side out and press the seams, sew the zipper to the top of each side. This was my first time installing a zipper. Eh...I did ok. But I do not have any tips. 

Then, pin the two sides, exterior sides together, and sew around the rest of the bag, leaving the zipper open.

Turn inside out and done!

Now, you have a removable pouch! You might use this for snacks, diapers...I'm using mine for feminine products, medications, and my wallet.

Ta-da!!

And there you have it! My favorite part of the process was choosing fabric. I had a TON of the exterior fabric left over from my curtain project. My husband bought it at Job Lot for super cheap! I still have a ton. I also had the yellow fabric left over from one of my Hawaii dresses. I bought the other fabrics at JoAnn's...I saw them when I went in for supplies for the dinosaur tales, and I couldn't resist getting a yard each for this project. So...what fabric will YOU choose for your Nanny Bag? If you make one, be sure to share it in the comments! Thanks for hanging in there during this long tutorial. Happy Sewing!