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Archive for the ‘Blogging for Endometriosis Awareness’ Category

I’m not the most optimistic gal by nature, but I feel like these posts for the Blogging for Endometriosis Awareness campaign were a little more pessimistic than normal. Also some of my adoption-related posts lately. When I talk about these things to people who aren’t my husband or close family or friends, I’m not nearly so dark and stormy. I try to put a positive spin on it, or at least make it sound like I’m managing things the best I can and I’m not letting it get me down.

But endometriosis has gotten me down, time and time again. You don’t try to raise awareness and research money for a disease that isn’t that big of a deal.

I feel like America has gotten used to overcoming medical conditions. We make a big deal about cancer survivors, for example. As well we should–surviving cancer is cause for celebration. But I think sometimes we forget why we celebrate. We celebrate because it’s HARD work to beat cancer, and also because so many people, through no fault or lack of courage, don’t emerge victorious. When it’s not your personal battle, or the battle of someone very close to you, you forget or were never aware of all the hard stuff that went on before you were declared well.

Chronic conditions are a different animal, but I think the same principle applies. It’s so easy to look at people who’ve “overcome” their condition and can do “amazing” things, then look back at someone else and think they should just try harder. Just eat better, find exercise you can do, take more vitamins or herbs or probiotics or experimental drugs, try acupuncture or chiropractic care or voodoo or small animal sacrifice…surely there’s some reason you’re worn out and beaten down beyond what your illness does to your body without your say-so!

It’s just easier sometimes to pretend you are one of those amazing overcomers.

So if my blog posts sound a little defeated or depressed, it’s because I’m tired. I’m tired of knowing just a few months before endo pain set in, I was in the best shape of my life. I’m tired of pain that is unrelenting and unresponsive to conventional treatment. I’m tired of watching so many friends, cousins, and fellow church members have babies when I can’t become a mom for love or money (literally). I can tune all this out for hours or sometimes days at a time, but then it all hits me all over again and leaves me a hot mess.

It is both comforting and horrifying to know I’m not alone. There are other women who share aspects of my story, which means it’s real and validated, but it also means they are in just as much pain and turmoil. I sometimes tell myself they probably handle it better, but I bet their husbands or best girlfriends would disagree, even if they aren’t willing to admit it themselves.

Endometriosis is hard. It affects women in different ways, some with more pain and complications than I have, some with less. The common thread is that it tends to stick around even when you think you’ve overcome. Maybe a “cure” is too much to hope for, but deeper understanding and more effective treatments aren’t. Please visit Jamee’s blog again for resources and some links to help make that hope a reality.

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I’ve struggled with this week’s topic. Not because I don’t want to make a difference with regard to endo, but because I don’t feel I really have and I’m not sure how to go about rectifying that. For me, endometriosis feels like a very solitary thing. I don’t know anyone in “real life” who has it (although one of my co-workers thinks she may have it, but she hasn’t been formally diagnosed and birth control pills are actually helping her). For all that it runs in families, my mom, grandmothers, aunts, and lone female first cousin don’t have it, nor do any friends or family-in-law. I come up with creative ways to explain how it makes me feel (things like “a kangaroo is drop-kicking my uterine wall right now”), but no one actually gets it.

So for me, it feels like something that isolates me, especially when a slew of my friends had babies a year-and-a-half ago. While I feel like I’ve gone a decent job of educating those closest to me on how endo affects me, none of those people are doctors, or have research grants, or even have large web platforms to bring awareness and money to this cause. Mike and I have made donations to the Endometriosis Research Center in hopes that they can help patients like myself, but we are only one household, not a philanthropy.

I am humbled and amazed by women like Jamee who can draw blog traffic and fight for awareness while also fighting the disease itself. For me right now, the combination of endo and our so-far-futile quest to have children often leaves me fighting to just make it through the day. My job at church is a very physical one as well as one that can tax my mental energies and my introverted need for solitude, so on Sundays, Tuesdays, and Wednesdays, that’s where my fight goes. It’s hard not to look at other women who have so much more on their plates than I do and think, “You really should be doing more, Emilie!” More of…everything. But that’s not productive thinking because it just leads to paralyzing guilt and I don’t do much of anything.

What I would love to see the endo community press upon the doctors who treat us, though, is that we need more research into the root cause of our disease and ways to attack that root cause. Enough of the Band-Aids of birth control pills and ineffective surgeries. We deserve to have a clearer understanding of what is happening to our bodies and be able to manage the disease itself, not just individual symptoms. I know I’m not alone in that desire, and I really hope that it finally sinks in to enough of the right people to make some sweeping policy changes among doctors across the world.

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When I saw the prompt for week two of the campaign, how endometriosis has affected relationships, my husband, Mike, filled my thoughts. The infertility resulting from endometriosis has affected relationships with family and friends in various ways, but because we live on the other side of the country from our families and the friends we grew up with, the day-to-day changes from living with this condition primarily affect him.

Our entire marriage has had him working a full-time “business hours” job that provides the lion’s share of our income while I worked part-time in our church’s children’s programs and/or baby-sat for families I’ve gotten to know through that job. This has worked out great for us because such a schedule gives me time to write while he’s at work and also gives me time to clean the house, run errands, and generally “keep track of things.” Thus our weekends are often free for relaxing, having fun, and fully participating in our church community. Mike loves his job and earns enough to sustain this lifestyle, I get the freedom to recharge my introvert self and pursue my writing without burnout from also working full-time.

But while I genuinely prefer to do most of the housekeeping myself (though I welcome help from Mike with cooking, and thankfully he’s happy to give it), endo has often made this not feasible. Though Mike is happy to clean the tub or carry the trash can to the curb on weeks when it’s extra heavy, it makes me feel like I’ve somehow failed. He works all day, yet I’m the one claiming to be too tired to do the things I’m supposed to be doing anyway? But the pain is sometimes too much, even with medicine and plenty of rest. And when I have to take it easy for several days, it’s hard to build my energy back up when I am feeling better, especially when I know it’s only a few weeks before the cycle repeats itself.

The pain and fatigue of endo plus the depression that has come from a miscarriage, infertility, and a slower-than-a-disabled-sloth adoption process has at times turned Mike into my caretaker instead of my sweetheart. Sure, when I’m genuinely sick with a sinus infection or recovering from surgery, that sort of care is understandable. But more than I would like, he comes home from work at dinner time to find me on the couch with a book and my phone and a cat, dinner unassembled, house a mess, writing left undone, crying because the pain wouldn’t calm down or it was accompanied by nausea or a headache, and we still don’t have a baby and never will, darn it! He never complains out loud while he throws together something quick and cleans up afterward, but I know it’s not fun. I know he’s tired of listening to me cry when nothing I cry about is within our ability to fix. I know it’s not the marriage he thought he would have before we were both out of our twenties.

But from my side of the couch, even when I feel most like a wife-fail, I know I am blessed to have married such a gentle, loving man to whom caretaking comes fairly naturally. He gets this from his dad, a combination of nature and nurture, I’m sure. My sweet husband takes the “in sickness and in health” part of our vows very seriously, and I believe that this crazy disease has stretched his heart in a good way. He knows to blame the disease and not me when we can’t be intimate as often as we’d like or when we have to waste a rare sunny Saturday inside watching movies instead of exploring a new state park. I feel plenty of guilt for both of us, but he never adds to it.

I pray that if we have a son, he will take note of his daddy’s caretaking attitude and bring one of his own to his marriage. And I pray that I can be more grateful and less self-condemning when endo gets the better of me, because it’s a hard balance for me to strike.

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Our first week’s prompt for the Blogging for Endometriosis Awareness campaign was how endo affects us physically. When I read that on Jamee’s blog, my inner Captain Obvious kicked in and said, “It hurts!”

Part of me wants to say, “Yes, it hurts. Any article you can find anywhere that talks about endometriosis will tell you it hurts, and they aren’t lying. The end.”

But I’m a little too wordy to leave it at that. My two faithful readers should know that by now.

My first clue that I had endometriosis was pain. Because this pain was the stabbing lower-right abdominal/pelvic pain associated with appendicitis and it occurred between ovulation and my period, I assumed that my appendix was the culprit. I called my primary care doctor, who thought it more likely to be an ovarian cyst since I didn’t have any gastrointestinal symptoms or fever. I called my pastor/friend/”West Coast Mom” who told me it certainly wasn’t my appendix because that would be too much and she’d have to have a talk with God if He put that on me.

We laugh about that last bit now, because of course if it had been my appendix, a quick operation would have solved the problem once and for all. Endo has proven a bit more complicated, as have her (and my) subsequent prayers.

This initial round of pain came in March 2011, six months after miscarrying my only pregnancy. We’d conceived the first month we really tried (though we weren’t being terribly careful for about two months before that). As I’ve said on this blog many times, we even conceived on an anniversary trip to Europe, getting a positive test our first full day home. We were heartbroken to lose that little one a week later, but some blood tests showed nothing amiss except a gene mutation abbreviated MTHFR that required me to take specialized folic acid prior to and during future pregnancies. As we came out of our grief fog and started to try again, we had every confidence that, armed with special vitamins, we’d be parents only a few months behind schedule.

But that stupid pain wouldn’t go away. It scared me as much as it hurt me, because ultrasounds showed nothing wrong. When it happened again in April, we went to the ER just in case and the doctor who examined me suggested endo. I left to spend a week with my mom a couple days later, and by the time I came home and could see my ob/gyn, my mom, husband, and I had all gotten confirmation from Dr. Internet that endo was the likeliest cause of this weird pain. A laparoscopy the last week of April agreed with us.

Sometimes the pain is more of a tenderness, and if I just don’t press anything directly on my abdomen I can pretend I’m “normal.” If I don’t have a cyst or something else weird, I can sometimes plan ahead with ibuprofen and modified activity levels to keep the pain at bay even during the days just before my period. But this doesn’t always happen. Sometimes I do have something weird, or the pain sneaks up on me, or I sleep in a funny crunched-up position, or whatever, and the pain keeps me down. Makes me cry. Makes me angry because God is Love and yet He lets me hurt this much.

And all this pain reminds me so often that somewhere along the way, my hormones went haywire and we can’t get pregnant again. I thought adopting would separate my physical condition from our having children, but emotionally it doesn’t. It’s all wrapped up together still, the two sides of what we’ve lost constantly vying for attention. We still haven’t found a good way to control the endo symptoms, and we haven’t adopted or birthed a child. So we wait for both of these to sort themselves out.

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I follow an amazing blog called A New Kind of Normal, where the fabulous Jamee shares the good, bad, ugly, humorous, and hopeful aspects of dealing with endometriosis and other chronic illnesses. Hers was the first endo-related blog I connected with when I was diagnosed and I continue to find inspiration through her faith and perseverance (and pictures of her adorable daughter, adopted as an infant but now a lively preschooler). Jamee also works to coordinate the Blogging for Endometriosis Awareness campaign each March. I loved reading her posts and others’ posts last March, but travel and surgery recovery drained my energy and kept me from participating. This year I don’t have such excuses, so I’m giving it a go!

As a lead-up, Jamee posted ten questions to give her fellow “Endo Sisters” a chance to get to know each other. It’s pretty self-explanatory from here, so I’ll get to it:

  1. How long I have been diagnosed with endo: My symptoms began at this time three years ago and I was formally diagnosed via laparoscopy in April 2011.
  2. Types of treatments I have tried to my journey with endo: I had the above surgery plus a second one in 2013 that included robotic excision. I’ve done Lupron (longest three months of my life), several birth control pills, herbal and homeopathic remedies with a naturopathic doctor, and two rounds of IUI under the assumption that pregnancy acts as a sort of “cure” for endometriosis. I had a Mirena IUD inserted a few weeks ago and I flip-flop daily as to whether it’s doing more harm than good or if I just need to give it time.
  3. My biggest frustration of living with endo: Probably that nothing seems to work for me! My body hates hormone treatments and every pain reliever except Advil. Both of my surgeries have increased my pain, even the excision surgery that was done by a specialist. It can be extremely irritating when doctors start a new treatment plan with great confidence and then blankly stare when I report negative results, as if I’m sabotaging my own treatment. Believe me, I’m stumped too!
  4. The biggest hidden blessing that has come with living with endo: For better or worse, I have learned an awful lot about my body in the past few years. I refuse to accept odd cycles as “just one of those things,” because I’ve learned that my body is often trying to tell me something. If, for example, I’d chalked up a fever and chills to “it’s just flu season” even though it happened before my period twice in a row, it would have taken much longer to discover an endometrial infection while I was on Lupron. Women’s bodies are complicated, but that doesn’t mean they act without any reason.
  5. If I had to pick a song that would be my “battle anthem” for living with endo, it would be: Most days I feel more like a captive than a warrior with a right to a battle anthem, but Gungor’s “Beautiful Things” reminds me that God can use whatever life throws at us. Again, it’s hard for me to keep to that mindset, but it’s in the recesses of my brain and heart somewhere.
  6. The food I could not live without: Cheesecake
  7. My favorite guilty pleasure: Downton Abbey is way more than just a TV series for me right now. It’s probably a good thing all my DVDs are on loan to friends who can resist the urge to binge for days on end!
  8. My favorite place to shop: Both my husband and I love our nearest indie bookstore, Third Place Books. It’s our fallback place to go when we just want to be out of the house for a little bit but not do anything too taxing. We can roam for hours (and sometimes do).
  9. My favorite drool-worthy actor: I love classic movies, and my movie heart-throb will always be Cary Grant. Yes, he died of old age when I was four, but therein lies the beauty and timelessness of movies. But Colin Firth’s not a bad back-up.
  10. If I could be doing anything today it would be: Showing my husband all my favorite places in London. Because we’d be in London, which is pretty much my favorite place on earth. Anglophilia, thy name is Emilie.

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