This week’s writing prompt from ChancesOur is:
Did you tell your friends, family, co-workers that you are going to the march? What were their reactions? If you are not going to the Endomarch you can answer, do your friends family and co-workers know about your struggle with endometriosis? Are they supportive?
But first, in case you’d like to catch up here all the previous posts:
Week One: Basic Info
Week Two: Getting Personal
Week Three: An Open Letter to Congress
Week Four: An Interview
Week Five – Goals
Week Six: Why Is This Important?
Week Seven: Spread The Word
Honestly, I’m not entirely sure how to respond to this prompt. I’m not attending the march so I haven’t mentioned it at work. My friends and family know I have endo. It’s not a secret. Nor is my infertility. But I also don’t shout it from the rooftops. I do my shouting here. I pull out my soapbox here on this blog.
But are they supportive? Yes. Mostly. They are certainly not NOT supportive. But it’s difficult enough for ME to process what this disease means for me so I can’t really expect them to really grasp it. It’s difficult for me to say that endometriosis is the cause of all my infertility or every laparoscopic surgery. That’s not really proven.
It is unclear if all my reproductive issues are due to endo. It remains unclear to even now what is going on in my body. That makes it difficult for me to say symptom X is caused by Endo. If I can’t reconcile these things in my own brain, how can I expect others to understand? How can I expect them to offer appropriate support?
But they try. And that is worth a lot.
March 6, 2014
Recently [this post has been sitting as a draft for some time but that doesn't really matter since this topic recurs on a regular basis] there was a discussion in the IF corner of the Twitterverse about whether it is better or worse to have an explanation for your infertility. This is an old topic that surfaces every now again – usually when someone who has unexplained (or not well-explained) infertility decides to stop treatments. She knows that stopping is the right choice for her but she still doesn’t know WHY fertility treatments didn’t work. It seems to be frustration piled on top of anger piled on top of heartache.
My infertility is explained – thrice over. Well…explained may not be the best word for it. But I have diagnoses. I can give a name to the cause of my infertility if not a name to the cause of the cause. Giving a name to a thing can give you power over it – or a sense of power. I have names I can bandy about: Diminished Ovarian Reserve, Endometriosis, Adenomyosis. I have test results like AMH, FSH, countless ultrasounds, MRIs and now a pathology report that validate those diagnoses.
In the end, no one can tell me why I have these issues. No one can tell me what caused them. Not even one of them has a known cause in my case.
But I have names to call out and curse. Unfortunately they are all too long to produce any catchy battle cries. “Curse you, Diminished Ovarian Reserve!” just doesn’t have a good ring to it.
Am I lucky? Maybe. Probably. Most days I think so because I’m a person who likes to know things. Also, in the world of fertility treatments I am a rare bird. I didn’t have to make the difficult choice to stop fertility treatments. My RE broke up with me and said your uterus is Swiss cheese please stop the madness. Most people who have gone through IVF don’t have such concrete evidence of what is wrong with their reproductive organs.
And so I am somewhat lucky. I can’t imagine not having a name for what is wrong with me or having doctors that say, “It’s just bad luck, why don’t you try again?”
Actually I CAN imagine not having a name for what’s wrong with me as I did go through that before getting the endometriosis diagnosis. For any health issue, fertility related or not, it can be mentally and emotionally debilitating to have symptoms and no diagnosis. Doctors start giving you that look. That look that says maybe it’s all in her head. And after a while you start to believe it, too. But for those of you with unexplained infertility your only symptom may be empty arms and a broken heart.
And for you I have a proposal. I have names but no ultimate causes. A name is just a word given to something. Why don’t you name your infertility? Give it a name. OWN IT. That’s why I named my uterus. Maybe it won’t work for you, but for me it has helped to actually embrace it, own it…then beat it the fuck down. I got to do that literally through surgery, but words can work too (The pen is mightier than the sword and all). So give your infertility some manner of -osis and start yelling at it.
Just pretend you’re Meredith Grey and invent something like “Hostile Uterus” (OK it’s not entirely made up). Or be cheeky and call it Raymond – because everyone does NOT love him – or some other name you dislike. I can see how screaming at George or Shirley that s/he’s an ugly sonofabeach and should get the fuck out could be therapeutic.
Or not. You decide.
[DISCLAIMER: In case it wasn't glaringly obvious to you, it is not my intent to poke fun at people with unexplained infertility, merely to have fun with what could be a therapeutic process in dealing with it.]
March 4, 2014
Once again this post is late. This week…ahem…LAST week I was supposed to write about what I am doing to raise awareness.
I am tweeting.
@FurrowedFox’s #Endometriosis Tweets
I am Facebooking.
Well, you kind of have to be my friend to see that but, trust me, I’m doing it.
I also checked with my state coordinators for the EndoMarch to see if there were any local things happening. Some people are doing flashmobs and even making videos. You should check out Casey’s video here.
Sadly there is nothing going on in my area. But I will spread the word about all the awesome things everyone else is doing.
February 25, 2014
I have been remiss. I could have sworn I blogged about this already. But apparently I didn’t.
Our surrogacy has a hashtag: #KitKaper.
Why Kit Kaper you ask?
Well, let me tell you. First, you probably already know that I don’t do anything online withing branding it with a fox theme. If you didn’t know that you’ve likely been living under a rock.
A kit is a baby fox. And that’s what we are trying to create.
I’ve always thought of capers as group activities where you are trying to pull off something whimsical or illegal or ill-advised or… essentially a long shot. And complicated.
I love that this word has so many meanings. It’s playful. It’s harebrained. It *might* be illegal. It’s wild and crazy but just.might.work. And even though it is not integral to the definition it is implied that it is a GROUP escapade. Which is what I was looking for. I was thinking along these lines:
They say it takes a village to raise a child. Well, here in InfertilityLand we all know that it can take a village to create one too. In the case of surrogacy it’s more like a whole town than a village. I couldn’t do it without B. And we couldn’t do it without the support from YOU. We are all a part of #KitKaper.
I must give credit where it’s due however. B came up with this hashtag. She knew the elements I wanted to capture and suggested KitCaper.
What about KitCaper? Or if we wanted to go Kardashian KitKaper.
I don’t know about Kardashian but I do love alliteration. And bonus points for also referencing The Muppets.
And in finding the link to all my posts about alliteration I just found the original hashtag post. I DID write about it after all. It just wasn’t finalized yet.
I also love that *IF* this works, I will get a kit or two that will certainly have his or her own capers in the future. This hashtag has longevity. And B and I make an awesome team.
February 24, 2014
Well…I’ve been writing about this for six weeks now, so…if you haven’t figured it out by now… you’re not gonna?
I guess that’s a cop out.
Why is it important?
As Shakespeare once wrote, “let me count the ways.”
Women are quitting their jobs. Or being let go. Because they can’t physically work. Or because the mental/emotional toll/sacrifice is so great that they are incapable of being productive. How can you support yourself, let alone your family, when your health will not allow you to hold a job? Yet these women are generally not eligible for disability. You can sign this petition to change that.
With no job comes no health insurance (until very recently). Lupron, debatedly an effective drug to treat endo symptoms, is damn expensive despite being generic. It’s been around for AGES but the pharmaceutical industry has managed to package it in new ways to keep prices up. Even if you believe it’s not a good drug (as many do), it is commonly used to treat endo symptoms. Yet it is beyond the financial reach of anyone uninsured.
Why is this important?
Because real women are suffering. Only awareness can help them. Awareness will bring education and research. Awareness will bring better treatments. Perhaps even (dare I hope?) a cure.
February 17, 2014
I think I have always been fairly empathic. It doesn’t take a rocket scientist to imagine how I might feel if something bad happened to me. So whenever I saw bad things happening to others I was capable of empathy.
There is one area where I was lacking empathy. Because I couldn’t imagine what it felt like. I can imagine a house fire, cancer, death, unemployment, etc. But I always struggled with mental health. I saw people who struggled with mental health issues as weak. There are a lot of reasons for this but I don’t think it’s necessary to list them. It’s not important why I couldn’t empathize with people struggling with mental health issues. What IS important is that I now can.
First, my divorce. I had some very rough moments with that. It left me with a slightly better understanding of depression. But only slightly. It sucked donkey balls but I got through it. And without professional help – mostly because when I sought professional help what I found was an idiot. I also got through it without meds because I felt that I was supposed to feel miserable. It seemed wrong to me to medicinally suppress the pain that I knew was normal. Perhaps because it never got truly out of hand.
What gave me a real understanding of depression was my first pregnancy coupled with Pops’ third cancer. Frankly it was mostly the pregnancy that caused the crippling depression but knowing that my father was dying did not help me see the light at the end of the tunnel. I knew that once I got through the pregnancy I would still have hard times ahead. And when I say “get through the pregnancy”… perhaps I should remind people that it took five months to kill those twins. Five months of blood draws to check my HCG levels. Levels that kept stalling or rising when they should have been falling. It got to the point that I stopped believing that I would EVER be NOT pregnant. The anxiety was overwhelming.
But that’s another story which has mostly been told already.
In addition to my personal experiences with situational depression and anxiety that got out of hand I have met a lot of people (mostly women) on Twitter who suffer from depression and/or anxiety (among other things). I’ve learned so much more about mental illness in general – just by being on Twitter. I no longer see these people as weak. And I no longer see them as the “crazy” people on the bus to move away from.
Having taken care of Pops for almost 7 years I am also now more empathic to people in wheelchairs and/or people who have “accidents” in public places. It can be difficult to get to the bathroom when you are physically impaired.
And now for the story that prompted this post.
Last week a man got on my bus and sat next to me. He was mumbling to himself and clearly not quite right. I could make out most of what he was saying since he was next to me. He was counting the stops until he could get off the bus and telling himself it was going to be OK. Clearly, riding buses gives him anxiety. Perhaps it’s being crowded in. Or maybe he fears all vehicles and the inevitable accidents that occur. And maybe the fact that the driver accidentally closed the door on a woman behind him didn’t really help his anxiety (she was OK).
All I know is that I used to see people like him and move away and think “crazy” and “weak.” But this time I saw a brave man doing something he was scared of. Despite being scared. And so I thought “brave” instead of “weak.” And when I heard him say, “It’s going to be OK, it’s going to be OK” I turned to him, smiled, and said, “Yes. It will be OK.”
He seemed surprised I had spoken to him but smiled back and said, “Yes. Thank you. It will, won’t it?” I’d like to think I helped him make it one more stop. Regardless, I have finally found a silver lining for all my suffering: Seeing people for how brave they can be on the inside rather than how weak they look on the outside. I think it makes me a better, kinder person and I am proud of myself for still being capable of learning new behavior. Who says you can’t teach an old dog new tricks?
February 15, 2014
Week Five. Halfway there! If you’d like a recap…
The goals for marching are threefold: Empower. Educate. Effect Change.
Oh how I love alliteration.
Since I am not able to attend and I am not really integrated in to the medical community I think my main goal here will be to EDUCATE. My goal is to EDUCATE THE PUBLIC ABOUT ENDOMETRIOSIS. And I think I’m doing just that by writing these posts.
But could I do more? Probably.
But I have a lot of other things going on right now. So I’m going to attempt to educate without making myself crazy about it.
First up: Educate patients.
Think you might have endometriosis? Check here and then ask your doctor.
Do you know you have endometriosis but need an excision specialist for surgery? Check out this map to find an endometriosis specialist (hopefully) near you.
As with any health condition it is wise to be your own advocate. Or, better yet, bring someone with you to your appointments. Always ask questions, do your own research and challenge your doctor if what she says doesn’t correspond to your research. Make her explain her reasoning.
And if you are experiencing severe pelvic pain on a regular basis don’t let anyone try to tell you that it’s normal. It’s not.