The Diagnostic Blilt Unraveled
The squares on the quilt only represent part of the story. Read below to hear the larger reaction of each stirrup queen or sperm palace jester when he or she received that infertility diagnosis. Contribute your own reaction to your own diagnosis in the comments section. The Blilt projects are always open and we will be continually adding to them as new words come along from future members of the infertility and pregnancy loss community. Click on the hyperlinked words in order to learn more about the Virtual Quilt Project and how you can contribute.
“I knew it was bad. . .but this bad” was my first thought when I found out that not only were we battling PCOS, but blocked tubes and mild MFI as well (from Sean and Mary’s Family).
I knew in my heart from the time I was small that I would have problems having children, but I also knew it was the one thing that I wanted more than anything. We never received a diagnosis. We just reached the year mark. The two year mark. The three year mark. Things failed and failed. I think around the time we started seeing an RE (a year in) and I was officially infertile, the feeling was that things would work out. But often it’s more like “I always knew this would happen. But holy crap, this is my LIFE” (from the private blog The Problem With Hope).
I’ve got to say that I didn’t really believe I was infertile (despite being signed on with an RE, 5 failed IUIs and a cancelled IVF) until very recently…and now: I feel marked, broken and doomed (from You’re Still Young!).
My dream life died! I had so many plans; I couldn’t wait to see R with our baby. He gave me so much when we got married–he asked me to be a mother to Little H, and I couldn’t return that sentiment because I couldn’t make a Little anyone. And then my uncle passed away, the man our child was to be named after. At that point, I went from being infertile to being defeated and no longer whole. The last little dream I had held onto was telling Goofball that I was pregnant and that I was naming the baby after him, and that dream disintegrated right in front of me (from Making Toy Soldiers).
I knew that I wasn’t going to let having to do IVF get in the way. I would go forward and keep at it with a determined, head-strong perseverance. I still feel this way. Even though it definitely gets me down, I still think that I just have to keep plowing through and eventually I’ll get to my goal. It’s just taking a lot longer (and a lot of different routes) then I originally expected (from Sticky Feet).
I felt a rising sense of panic. The day I decided to call my OB/GYN to ask about starting the fertility testing process was also the day I found out an acquaintance was pregnant. As soon as I read her e-mail, I ran to the office bathroom and just bawled for a good half hour. Then, fighting panic, I dialed the number to my OB’s office and made an appointment (from This Sorta Fairytale).
My first thought, on hearing that my initially “slightly elevated estrogen” was actually masking high FSH (and therefore, “diminished ovarian reserve”) was, “This can’t be happening. I’m not THAT old…am I?” (from This is NOT What I Ordered).
“Falling apart, body, mind and soul.” I’m still picking up the pieces and trying to glue them back together (from Max’s Mommy).
When the RE looked at my file and blood work, she quickly came up with my same conclusion that I had. PCOS. By this point I had gone to my primary care and a gyno – who both told me that I didn’t have it because I wasn’t overweight. Err—I wanted to call them up and tell them “I told you so!” And to refer them to RESOLVE (from Flutter of Hope).
Because we’d had several SA by that point, I wasn’t at all surprised. In fact, I was glad because now we could move forward and do something. It was a little shocking to be told that my husband’s sperm count was so bad that IUI was out of the question, but the unthinking steam roller part of my personality came out and just started working on the practical aspects of the problem. We were scheduled for a cycle by the time I left the office (from The Twinkies).
We never did get a diagnosis but after the first MC I can remember a small gurgling starting deep in the pit of my gut that grew to a wailing “WHY! WHY! WHY!” when it reached my lips (that wailing continued in my head for months). I can remember many days standing in the shower absolutely WAILING the words “WHY! WHY! WHY!” as I bawled. I used to turn the water up so hot it would sting my skin just so I could feel something besides the pain in my heart. Now that we are moving forward with adoption my whole outlook has changed. I’m reminded of a phrase my Grandmother always used … “Nothing is so bad that it aint good for somebody”. It took me years to understand what she meant. She was a very wise woman (from The Spirit of Magnolia).
Since I have known that we would have to do IVF (for male factor) for so long I was in total shock that we had female factor also. My first thought was “You’ve got to be kidding me” (from Changing Expectations).
I felt relieved. I went into the appointment thinking it was just all in my mind, that I wasn’t ovulating, or that they wouldn’t be able to tell why. PCOS really sucked, but I liked having the label and knowing there was a treatment plan. In fact, I really should have known better, having gotten that as a possibility when I was 18, but a lot a time had passed (from Southern Infertility).
“Finally. Let’s get started.” I think that’s pretty much how I felt. In the months leading up to the “diagnosis” (which in our case was simply hitting the one-year mark), I had little to no hope of actually getting pregnant spontaneously. I was just waiting for the clock to tick over so insurance would cover us seeing an RE (from Relaxing Doesn’t Make Babies).
My first thought when we were first diagnosed. Everything was in slow motion. It’s like screaming… “No this can’t be happening to me.” “No not me.” I guess I was immediately pushed into denial (from Baby Blues).
Endometriosis? I thought my life was over. I got diagnosed while I was single and before I’d ever tried to get pregnant. I’d been in so much pain that I was looking for a binary yes/no answer about whether or not I could have kids, because if I couldn’t, I was going to have a hysterectomy to end the pain. Instead, I got a “Maybe, but it will be harder, and you may have more miscarriages.” So, keep the uterus, but then what? My biggest fear at the time was that nobody would want me with such obviously broken parts. Well. Second biggest fear. My biggest fear was that they would stop making Vicodin, because Jebus, the pain (from herveryown).
My initial reaction was mostly a nonreaction. I knew we were going to have problems so it wasn’t a surprise. After recent setbacks my reaction has changed to disbelief that it’s taking so long and hopelessness that it will ever happen for us (from Peace of Mind Is All I Want).
I was so not surprised by the PCOS diagnosis. Just angry that we didn’t know sooner. It was my first object lesson in needing to make myself heard by doctors. I’d known for over 10 years that something wasn’t right, but no one took it seriously. Now I really understand about being my own advocate (from Our Own Creation).
Comfort him. Reach out and comfort him and make it somehow okay. An Explanation: We were told my husband’s low sperm count and morphology made it impossible to conceive without IVF with ICSI. That simple. That complex (from Within the Woods).
I wasn’t completely shocked to find out that I had PCOS. It was 6 months later, when we went for our followup when we were ready to start IUI’s that we found out my hubby has a low count, plus very low morphology. At that point, I had already come to terms with the fact that it was all on my shoulders. My first thought was “Thank goodness it’s not just me” (from A Sibling for Celia).
Like Msfitzia, “broken” was my first reaction too. Later: devastatedly confused and hopeful.
Broken has been the most resounding feeling though — my stupid broken body (from Exile in Kidville).
Foggy. I remember hearing my doctor at my ear during my recovering from my lap saying, “This was the worse endo I have ever seen. We couldn’t remove it.” Shocked. I had no symptoms. Okay after the fact I did–but nothing MAJOR! My cycles were perfect. WHY ME! Numb. There was NOTHING I could do to fix Stage IV Endo. I just had to deal and move on. The best way to do that was to just not feel and be numb. I NEED A DRINK! Was my last reaction. I totally need a HUGE drink! (from My Journey Towards My Little Miracle).
That had to be one of the worst days of my life. I had survived much before the diagnosis, death of several close friends and family members I loved, divorce, two miscarriages totaling four babies, and yet this was what brought me to my knees. I felt guilty that the diagnosis hurt more. I felt anger that it wasn’t something I could fix. I felt even angrier that nobody had noticed this before when there was ample opportunity. I was in denial for a while, then shock, and now I am in a place where I just don’t know what to think about it. I was never able to put into words how that day felt for me. I instead shifted all of my thoughts and emotions into the technical realm. This is what an HSG is and these are articles on my condition. I couldn’t go to the place where you have to emotionally explain and explore what was happening. It was too hard (from Are We There Yet?).
My first thought when we got our severe male factor diagnosis was “But we can’t FIX that!” And then it was “what do we do now?” (from Serenity Now!).
Here’s what I thought sitting across from Superdoc as he recounted our results: Are you kidding me? We’re NORMAL! It was like a death sentance. Both of us are fine! There’s no reason why we weren’t getting pregnant! Fan-fucking-tastic (from Unexplain This).
I can’t remember my first thoughts but when the world started to fade back in (it was my 22nd birthday and the doctor told me that there was a 10% chance that I would EVER have a child), my first thought was – “Maybe we can adopt twin girls from Brazil” (from Fertility Musings).
Well, I had so many things running through my mind four years ago when we got our diagnosis, but the ones that stand out are: Oh, CRAP! Does this suck, or what?. What did I do to deserve this?. Well, that fertility monitor was a total waste of money. And really, disbelief. I really thought that the testing we went through would show that either I didn’t have the problem, or that there was something so minor that it could be easily remedied. I was so unprepared for what I’d heard, it didn’t register at first. Only later, when I was alone, did it hit me like a Mack truck-this was going to be my life, like it or not (from Infertility Sucks).
Relieved. I was under the impression that once we had a diagnosis we could fix it and move forward quickly. Ha! (from Fatty Pants).
We were never given an exact diagnoses therefore never had an “A Ha” moment. But after uncountable iui’s medicated & not, two failed ivf’s and a look into a future that might include 3 more ivf’s (one with a possible move to donor eggs from a younger sister) the continuing thought is …but I’ll still get pregnant, right?… Talk about a head stuck in the sand. Oh well, my head can stay in the sand until I emotionally can’t take it anymore. Then I know I’ll have to re-think my thought but I’ll jump off that bridge when I have to (from the private blog Knock Me Up).
I felt as if someone had died. My grandfather had died the week before we got our diagnosis, and I felt the same feeling of loss in both situations (from Subfertile Sadness).
“You made me wait.” I was devastated and so hurt by my husband because I told him over and over again that time was not on our side and his only answer was to be patient. Patience would never have gotten us pregnant. And, yes, a part of me still blames him for our predicament (submitted anonymously).
April 12, 2007 Comments Off on The Diagnostic Blilt Unraveled
WalkAmerica
So…
I’m really shy about putting this out there, but I’m doing WalkAmerica this year, which is the walk to benefit the March of Dimes. The money raised will go to “improve the health of babies by preventing birth defects, premature birth, and infant mortality.” Which…as you know…is kind of sort of extremely really close to my heart.
Our twins were IUGR and had to come out at 33 weeks (almost 34). They spent three weeks in the NICU and came home on heart monitors. It’s sort of crazy to read the old email updates I’d send–the day my son hit the big four pound mark! The day they took 1/2 ounce by mouth!
Um…that’s why I’m walking this May. Because my son finally hit the big four pound mark when he was about six weeks old due to the excellent care of the NICU staff and advances in medicine supported by the March of Dimes. And for the day the twins took 1/2 ounce by mouth or came off the heart monitors or became the little crazed monkeys they are today. All due to the excellent care of doctors and nurses and the good work of the March of Dimes.
I still get choked up writing about this.
So if you don’t mind a plea for fundraising–since it is a good cause that it close to many-a-stirrup queen’s heart, please click on the WalkAmerica link below to contribute–even if it is just a dollar or two in memory of another baby born too soon on the Land of If or in honour of a child who has made it out of the premature years. It is hard to be a part of this blogosphere and not know a story.
We’re also walking in honour of our friend’s son who came home this week after 111 days in the NICU. She is a fellow stirrup queen who delivered her son in her second trimester. He was 1 pound 12 ounces at birth. He is over 6 pounds 6 ounces today. Happy Coming Home Day, Yoav.
April 11, 2007 Comments Off on WalkAmerica
Coincidences
Let’s take a moment to ponder this series of coincidences:
Before last night, I had never heard the name Graciela. During dinner, my friend told me about a new woman she met named Graciela while she was traveling in Japan. When I got home, I printed out a contact list for some volunteer work that I’m doing. Last name on the list? Graciela.
Two days ago, we were passing by a series of houses in my parent’s neighbourhood. As we passed each one, I pointed at it and told my husband who had lived in each house when I was little. We passed by the house of a boy who was in my nursery school class–my first love. I have harboured a grudge against my nursery school teacher for 28 years because on the last Shabbat, she sat me next to Poison Oak Boy instead of my love, Danny (whom I called “Benny” because I liked the name Benny better than Danny. And Danny never conveyed any annoyance over being called Benny instead of Danny). “She knew this,” I told my husband as we passed his old house. “She knew I loved him and she sat me next to Poison Oak Boy.”
I am still not over it.
Last night, as I was meeting my friend for dinner–the friend who would tell me about Graciela–I paused in my parking spot to write myself a note. As I moved to open my door, a car pulled into the empty space next to mine and I waited for her car to stop. I thought to myself, “wouldn’t it be funny if it were the friend I’m meeting for dinner; choosing the parking spot right next to mine in this huge lot simply by chance.”
It wasn’t.
It was an old friend from nursery school–one that I haven’t seen in over six years since we lived in the same apartment building before we each were married.
We got out of the car and I told her about how I had been speaking about Danny the day before to my husband. And how it was a strange coincidence to bump into another classmate from that small nursery school class 28 years later. She asked what had happened to me in the last 6 or so years since we had last seen each other. We had both gotten married and changed our last names. I had the twins. She didn’t have any children yet. She asked if the twins were identical or fraternal. She said, “oh, it must have happened quickly for you!” I pointed out that over 6 years had passed since we had seen each other. The twins were now 2. It hadn’t been that quick.
My laydar buzzed a bit in the back of my head. Oh…you know…laydar? That sixth sense stirrup queens have for figuring out when someone else is a stirrup queen before they say anything? That familiar feeling of knowing that for both women, a good lay brings nothing your way.
We walked into the restaurant together and looked for my friend. She offered to wait with me until my friend arrived. She asked what I was currently writing. I told her that I do freelance work for magazines and I’m working on a non-fiction book. “What sort of subject?” she asked. “Infertility,” I answered.
“From your own experience?” she asked hopefully.
“Sure; the kids are fertility treatment twins.”
And that’s how I learned about her own diagnosis, the start of her first IVF cycle, and how her SIL just told her about her second pregnancy as my friend was telling her SIL about starting treatments.
We go to the same clinic. We have the same doctor in this large clinic. We both have high FSH.
I had been at home, working on the Diagnosis Blilt (oh–side note–send in your words for your square by tomorrow night. I have 35 squares created so far on kicky quilty-looking virtual fabrics. And we haven’t had any repeats–every thought is unique. Isn’t that incredible? 35 unique reactions to the same news. I’m going to post this first blilt when it’s finished on Thursday.) and then I go out to dinner to bump into an old friend with a new diagnosis.
Two girls in a class with perhaps eight girls total end up at the same clinic. What did the teacher put in our grape juice? Or is it all just a coincidence?
In Jasper Fforde’s novel, Lost in a Good Book, the main character is being “killed by coincidence.” When she asks her uncle what he thinks about coincidences, he says he believes that “most coincidences are simply quirks of chance…[but] the universe always moves from an ordered state to a disordered one; that a glass may fall to the ground and shatter yet you never see a broken glass reassemble itself and then jump back onto the table.”
What does that explanation have to do with the conjunction of Graciela-infertility-nursery school coincidences?
Because I marked the page about coincidences in that book when I read it 4 years ago.
What a coincidence that I had some foresight to mark that page for easy retrieval as I write a blog entry about the coincidences of the past three days.
What do you do with coincidences? It seems a shame to ignore them. It seems a little far-fetched to believe these things fall into place randomly and a little far-fetched to believe these things are predestined. It’s sort of like a dream that sticks with you–you don’t want to overlook it and, at the same time, you know it’s probably just your mind finding connections in unconnected spaces. But if the glass can break, why can’t the glass unbreak? And if these are simple quirks of chance, why do they make you feel as if someone is jerking your head upward and making you see the bigger picture?
April 10, 2007 Comments Off on Coincidences
The First of Many Blilts
Updated with the beginnings of the blilt at the end of the post:
You know how a quilt pulls together all these unrelated pieces of fabric and combines them to produce a single object–a blanket? Well…a blilt would be the same idea. There are all these unrelated blogs that go off on their separate stories. But they could be tied together to create a source of warmth and comfort.
Maybe this is something that needs more of a visual explanation than paragraphs of analogies.
Okay, so as of writing this, no one has submitted a link about receiving an infertility diagnosis for the emoblopedia. So this is my idea: everyone will submit how they felt when they received their diagnosis in ten words or less. Just think back to the moment when you received whatever test results began to point towards a problem or the moment when you realized that you wanted to be pregnant but would need assistance to do so. Whichever word(s) come to mind–anywhere from a single word to a ten-word phrase (pick one sentiment)–put them in the comments section or email them to me at thetowncriers@gmail.com.
I will then take these and weave them into a clickable, virtual quilt of blogs. It will look something like this:
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You’re Still Young |
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Serenity Now |
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But instead of blog names, the words inside the squares will be the emotions felt when you received a diagnosis and the link will take the person back to your blog. The general idea: that you might find a like-minded person in clicking on the squares of the quilt that speak to your own experience. For instance, if I just received my own diagnosis and I was feeling as if I had just been punched in the gut, if someone had a square that said “punched in the gut,” I could click over and read their journey. At the same time, the blilt stands as a testament to the wide range of emotions one feels in these common infertility situations–receiving a diagnosis, receiving a BFN, experiencing a miscarriage, seeing two lines.
I’m playing with graphics to try to make something that looks a little more quil
ty (quilty in the quilt-like sense and not in the Lolita sense). But regardless, send your words (or short phrases) either by leaving a comment or sending an email. It would speed things along if you also included your blog address. And I will have this clickable quilt up and running in that section of the emoblopedia later in the week. Send your thoughts between now and midnight on April 11th (Wednesday night). I’ll start constructing the next blilt for a new subject after this first one goes up.
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Update:
Just thought of this as I started laying out the first pieces of the blilt: you don’t need to have a blog in order to participate. We can have squares that aren’t linked outside the blilt that still convey how someone felt in the moment. And we can link words to an email address if you’re open to having someone write you out of the blue to talk about their own diagnosis (a la the peer counselors list). I just didn’t want anyone’s words left off simply because they didn’t have a blog.
Here is the beginnings of the Diagnosis Blilt (I’ll put up the full blilt when it’s ready on Thursday or Friday):
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I think it’s gorgeous to see such diversity in thought. Need to go weave my own words into the blilt as well…
April 7, 2007 Comments Off on The First of Many Blilts
Friday Blog Roundup
Um…I’ve been nominated for a Best of Blogs Award (thank you, Allison!). So…er…if you like my blog…um…please click on over and vote for me…um…. And…er…I think you can vote once a day…so…um…feel free to make voting the first thing you do every morning…like…as you drink your coffee…or something…um…so thank you…and…er…that’s it.
Best of Blogs: Adoption and Fertility Blogs
Um…and the next thing is that I started a new space to house the emoblopedia now that it is starting to grow. If you are linking to the old space on my blog, it will still work since it continues to direct people there. Please spread the word about its existence and keep sending links as you write them (or find them in the deep dark recesses of your archives). I collect all the links that come in and enter them once or twice a week so it sometimes takes me a day or two to get links up into the emoblopedia. Just so you know, I always send back a note when they’re up. In light of some Internet abuse I recently discovered and in the interest of quality control, I’ve now decided against going with a wiki program. So I’ll enter them by hand–a little slower, but probably less work overall. You can speed up the process by using the new submission format. And here’s another idea: when you can’t think of anything to blog about, use the empty emoblopedia categories to think up a new post subject. And then send the link!
To kick off the little emoblopedia’s space, I christen this week: Linky Linky Week. Look at the emoblopedia to see where there are gaps and send over a link to plump up a skinny category. Or kick off a new category by sending a link to start it off. If you are feeling too shy to send a link, leave a comment on someone else’s blog suggesting one of their posts for the emoblopedia.
Oh…well…lookie here–these look like some good posts for the emoblopedia…
Congratulations to Katd on the birth of her daughter, Lily. If you’ve been following Katd’s story at They Grow In Your Heart, you know that she was waiting to adopt. Most people get 9 months to get into the idea of parenthood. Katd and her husband had about 2 weeks. 2 weeks ago, they were going through life, eating out, going to work, stressing about adoption. And today, they’re parents. It’s sort of mind-blowing how quickly life can change. Head over and wish them good thoughts and look at pictures of little Lily.
Speaking of adoption, if you want to hear one of the most kick-ass stories told by a kick-ass storyteller–the Journeywoman–head over to her blog and read her post “Daddy, I Knew You’d Come For Me.” Will send chills down your arms.
Anam Cara at Living Without Thomas has a brief post this week about a school assignment where her daughter needed a photo of the family. The son they lost is missing from every photo of the family. I’m not sure why this entry touched me so, but I love that her daughter spoke up at school and informed the teacher that she actually has two brothers.
Niobe at Dead Baby Jokes has a gorgeous and heartbreaking post about her c-section scar. Even more heartbreaking is reading the comments of all the other scars–internal and external–from loss.
Bleu at Soulbliss has a very moving post this week called “Vent.” The two week wait has a funny way of bringing to the surface all of the shit in your past that brings out the same emotions of frustration and sadness. In her vent, she wonders how her child will view his own childhood and wonders if there is a way to circumvent this phenomenon as she lets go of all the things she has already let go of again and again.
Lastly, sometimes a blog post about nothing can speak volumes. Lut C. reassures with her post this week that not every pregnant woman feels symptoms. For anyone who has been worrying about a lack of symptoms during the wait or early pregnancy, I found her post extremely reassuring. I think you can’t help but search for symptoms–some sign of good things to come–but not every woman feels symptoms and the early symptoms are so similar to pre-period symptoms that it really is impossible to know anything from sore boobs or a lack of sore boobs. It’s not a post to blow wishing smoke up your bum, but one that presents reality. And I take comfort in that reality from time to time when I need hope more than I need information.
A small vignette on why it is good to move people from human-nequin status to living, breathing human… On the crappiest Thursday ever, we went to the food store. When I was entering, former human-nequin, Steve–who does odds and ends around the grocery store–came over to tell me that when he saw the look on my face as I was driving through the parking lot, he immediately wanted to find me a car cart to make the morning easier. He told me, “I just wanted to bring it to your car to make something easier because you looked so frazzled.” Thank you, Steve. You are truly the only reason I go to that food store. If it wasn’t somewhat creepy for me to show up at the food store with some homemade cookies for you, I would. Instead, I will simply write a letter to your manager telling him that you are the only reason I ever give money to his crappy, crappy food store. Steve makes me want to seek out other human-nequins and turn them into real people. I have a feeling that it’s time to introduce myself to tall-skinny-man-at-Starbucks-who-always-gives-my-kids-cups-of-water-even-when-I-don’t-
order-anything.
April 6, 2007 Comments Off on Friday Blog Roundup
