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:
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 quilty (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...
48 comments:
you are unbelievable...i love this idea!
my bladder is so full (waiting for iui)i can't concentrate at the moment, but i'll be back!
peace
shlomit
"Broken" - that's probably the first thing that came to mind. I've felt broken for so long (through the miscarriages, through losing Thomas and now dealing with infertility) I'm not entirely sure if that's the first thing the fell into my head of if the feeling just intensified, but when I think of trying to have a baby, broken is what comes to mind.
Ain't life grand?
Onward and Upward
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, perserverance. 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.
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.
Relieved at first - we had found something to "fix".
You are always doing so much for everyone. Please let me do something to say 'thank you'. I would love to help put together a quilt graphic for you Mel. Each square would fit together and the individual would have one to put up on their own blog to link back here.
"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.
I don't know that this can work for me, because I'm not a public blog anymore/for now. But I'll add. You can link my email. Or my blog, but it's private, as you know.
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."
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.
thanks again for doing this mel...
peace
shlomit
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 pg and that I was naming the baby after him, and that dream disintegrated right in front of me.
My contribution:
Well, duh! They're finally LISTENING to me!
What a great idea, Mel! Thanks for giving us the chance to do this!
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?"
Devastation.
It can't be happening to me.
I have to be a mom.
Why us?
How long will it take for my life to be normal?
ANy of the above would be some of the thoughts that ran through my head in a matter of seconds.
I LOVE this idea!
Mine would be:
Saying to self: "Hey, Dumbass. I knew all along!"
"Falling apart, body, mind and soul."
I'm still picking up the pieces and trying to glue them back together.
Thanks so much for this, Mel. Actually, there is so much to thank you for that I don't know where to start.
"I KNEW it! How soon we schedule the IVF cycle?"
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.
"Crap, I was right, PCOS."
Mel, first and for most, thank you. G-D has blessed us with you :).
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.
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.
On receiving my diagnosis, 2 things:
1. NOW will my husband pull his head from the sand?
2. I always knew there would be a problem.
(you can use both or either.)
LOVE this idea, you are one brilliant woman, Mel!
This is a great idea.
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"
I have to echo Larissa's thought.
I felt relieved. I went into the appointment thinking it just all be 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 a possibility when I was 18, but a lot a time had passed.
"Finally. Let's get started."
I think that's pretty much how I felt. 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.
I felt like I was wearing a scarlet letter "D" for Defective.
Here's what I thought
"Unexplained? So am I making this up? What is the plan next?"
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.
Bravo! You're so amazingly creative. I love it!
"Oops she did it again!" That would cover fertiles who lapped us or the annoying cliches and assvice that we get.
I have an answer, let's move ahead!
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.
This blog is such a wonderful resource. Thank you so much!!
"Well that at least makes some sense." And then, "How soon can I get that Rx filled?"
Mel, you are a constant fountain of good ideas. It's really quite amazing.
I wasn't surprised; I've known for years my ovaries are crap!
What a fantastic idea. I'm very impressed.
10 words or less... I'm going to have to go over. Is the ten words or less thing crucial?
What I said to DH:
"I don't believe you. It can't be that bad. I can fix it. The next SA, the numbers will be up."
What I thought to myself:
"All that humiliating day-14 sex for nothing. Why did we wait for so long to get tested?"
Now I have to be honest.
I thought:
He thinks it's him but I know it's me. It's because I'm a bad person.
Thanks for explaining why it needs to be 10 words. I'll have to go with the last comment I made. I know that IF isn't a punishment, but it felt that way at the time.
And the thank you for the embryologist: we're in Japan so there is a language barrier. And (of course) the two people I know who are Japanese and know me well enough to translate a letter to my embryologist are both struggling with IF... not sure if I can ask them to write my letter. IF sucks.
And thank *you* for the sweet comment on my blog! And for doing the (I can't spell it) emoblopedia and blilt!
"Now we know. Where do we go from here?"
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.
New blog address, btw...
http://ourowncreation.wordpress.com
I never saw this post - this is a GREAT IDEA.
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?"
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".
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.
this is a great idea, Mel -- thanks!
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 was to just not feel and be numb.
I NEED A DRINK! Was my last reaction. I totally need a HUGE drink!
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".
Wow Mel, this is a great idea (as usual, you brilliant thing, you)....
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?" (I'll totally understand if you don't put that one there)
"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.
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.
Great idea.
Relieved
I was under the impression that once we had a diagnosis we could fix it and move forward quickly. Ha!
Empty, heartbroken, broken, spiraling out of control, LOST
lucky#2
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.
Thanks for thinking of this -- it is a great idea.
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.
(great idea, by the way)
Great idea.
is there any way for infertile men and women to meet each other? I am a 25 year old infertile woman and looking for an infertile man who i can connect with. It's difficult for someone like me to have relationships as I have found, because you have to tell the other person your condition and they usually leave. I dont want a normal guy anymore, I want someone I can feel secure with, someone like me who understands me. I don't want to be alone, and I realised there are other people going through this too... but what can I do? I can't find any men who are also infertile?
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