Uterus Liberation Day, or, Don’t Say You’re Sorry

It’s been a whopping 8 months since my last post, and there is so much I want to write about. But first, I’m going to wrap up that last rant with this cathartic summation courtesy of John Oliver on Last Week Tonight.

Ok, it’s time for stories about things actually going my way. After 6 years of not changing my mind, my preferred doctor finally consented to giving me a hysterectomy.

UTE LIB

I don’t care if it is a birthday meme, IT SPEAKS TO ME

The nightmare I described in the last post plus the severity of my pain was finally enough to convince her this was what I needed, PROMPTLY (reality: 5 weeks). I kept a handy countdown app on my phone.

COUNTDOWN CAP My friends and family were thrilled for me, and congratulated me while acknowledging that congratulations shouldn’t be necessary. Nobody congratulates you on getting your appendix out, and nobody makes you wait years to do it. I cared about my ute as much as my appendix. (Incidentally, like any good academic, I have a really really long appendix).

I am exceedingly lucky that I can count on one hand the number of insensitive friends or family that have disregarded or ignored my disease. Actually, I can count on one finger, and I bet you can guess which one I use to count him. In continuing evidence that I am surrounded by the very best people, my friends threw me a Hysterectomy Party.

Family even brought cupcakes from Boise for me!

Family even brought cupcakes from Boise for me! Courtesy of Lilly Jane’s Cupcakes.

UTEIATAEmily made me a pinata, complete with cysts and lesions and ovaries that will not cooperate. PERFECT.

I cannot tell you how good it felt to beat that uterus pinata with its own ovary. And we all concurred, burning a uterus in effigy was the most pagan thing any of us have done on Easter weekend.

UTE EFFIGY

or any other weekend, really.

I had hoped that once I set a date for my surgery, I could cope better with my pain. I could always remind myself “Only 30 days…only 25 days…” but I was mistaken. Every day was worse than the one before it. I couldn’t go to work for the five weeks leading to my surgery. You could find me miserable in bed from painsomnia, or miserable on the couch clutching an electric blanket because standard hot pads were insufficient.  And angry, I was always exhausted and angry. My psych let me up my anxiety medication from “as needed” to “three times a day.” I did cross stitch projects, which made sense since I couldn’t move around and all I could think about were needles.

OVARYACTING

Picked up this pattern from Etsy shop NerdyLittleStitcher, the cysts and scars and endo growths were my idea. https://www.etsy.com/shop/nerdylittlestitcher

I couldn’t exercise, I’d been putting on weight, I hated my body and all my clothes, and I was teetering on the edge of a midlife crisis, mourning the loss of my 20’s and all the freedom and energy I had then. (In my 20’s, I fell in love, graduated college, got married, traveled, and danced all the time. Even with all my accomplishments, I feel as if endo robbed me of that decade while I cycled fruitlessly through every birth control available, continually upsetting my hormones and only ever making the pain worse).

The 1-10 Pain Scale is totally insufficient for a person coping with chronic pain. It’s appropriate for someone who’s just fallen down stairs, or a tooth ache, or childbirth (I assume!), something acute. I was operating (sort of) with a daily baseline of what I interpreted as 7-8. Even driving hurt– every bump stabbed. My doctor asked me, “How do you live?” and my only answer was “Ten seconds at a time.” I couldn’t plan for anything, couldn’t look forward to anything with excitement; even the surgery. I was sure I’d be feeling awful for a few weeks even after “Eviction Day.” There was still no identifiable end. I even had to reevaluate my Level 10. Yes, I found a pain higher than the strongest pain I had imagined. I tried to enter 11s and 12s in my symptom tracker, but…

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My doctor prepared me for two possibilities for my recovery. One, that since I had lived with so much pain, this too would suck. Both my previous surgeries left me worthless for at least 9 days. She prepared me for worse, with 40 oxycodone. The other possibility was that since I had so much pain, this would be relatively a breeze. After all, I had been “living” at an 8. I needed to take 15 oxy just to get me TO surgery. Vicodin no longer even took the edge off (and if you mention ibuprofen I might reach through the internet to slap you).

I was at the hospital by 6:30 a.m, and before the gas, my surgeon had me tell the surgical team about my hysterectomy party and pinata. They loved it.

POSTSURGERY

I was home by 6:30 p.m. with the huge relief knowing I had left my uterus, cervix, both tubes, and left ovary at the hospital. I felt so good I tried to eat pizza (I admit, a bad idea). But aside from that stunt, I didn’t have nausea. I didn’t have any bleeding. I didn’t feel the air bubbles in my shoulders. As for pain, I followed to the recommended dose schedule of the oxy, but stopped after 5 days! I only needed 15 oxy to recover!* I went out for dinner with my sweetie 3 days after surgery. When I saw my doctor for the post-op appointment, I had been off pain pills for a week! A WEEK! She was flabbergasted (and yes, she apologized for making this a 6 year process, so hopefully the next Katie that comes around has it easier).

In my post-op appointment, my doctor confirmed I’m recovering fine. She said the weirdest thing… “I’d like to see you back in… no more than a year.”

I went back to work in about ten days, and was able to attend graduation for “my” kids. I can exercise again. I love my scars. I can sleep and wake up rested and without pain. My clothes are starting to fit again. I am having days with no pain! When I do hurt, for the first time in my life, Aleve seems to do the trick. I’m still turned off to Ibuprofen.

There is so much left I want to write about, so I promise I’ll be back in less than 8 months this time. I’ve learned a lot this year about coping with chronic illness and hospitalization for both myself and my husband. Roughly a list of Do’s and Don’t’s, which I will begin here.

When I tell you about my hysterectomy, don’t say you’re sorry.

Endo wasn’t going to kill me, but hysterectomy saved my life.

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.