Waiting In Sunshine

How God Awful It All Was

Being here back at my childhood home has brought back lots of weird memories and sensations from the past five years. It's like I can remember each time I was down visiting while we were in the thick of things, hoping that the next time I came to visit something would have changed. It was always so hard to visit my sister and my nephew, and my dad and I having long talks in the car rides up and down to visit her. And, of course, the big monkey in the room is that this is where I lost DIJ. It was in my parent's guest bedroom that I laid there for an hour searching for his heartbeat on the doppler, and then we eventually went to the emergency room at the hospital I was born in just to make sure all was ok. We all know how that story ended. My brother had been sleeping over that night and my sister and I went in there to wake him up after we got home from the hospital at about 3AM. We shook his feet, said his name and said "wake up, wake up, we need you, we need you." He sat up in the bed and my sister just flat out said, "Sunshine lost the baby. Get up." Obviously he was super confused but then he rallied and was an incredible support for me during the next six hours or so I was still here before getting on a plane to fly back up to New York with my dead baby in my womb. You'd think I wouldn't remember the flight, getting off the plane, meeting DH and his mother at the airport, and then the drive directly to my OB's, but I do. It's a weird memory to look back on.

And now, having been out of the game for five months exactly today, I look back and it's still so fucking weird. I'll get these weird mini flashbacks of being on the phone with a clinic, pushing for an earlier start date, or today I had one when I cornered the donor egg coordinator at Cornell once I decided to go that route. I was sweet talking her, being as nice, friendly and peppy as could be so she would like ME the BEST and hopefully push the process along. She spent a good amount of time with me even though I didn't have an appointment, which made me feel like I accomplished something for that one day, which put me in a better and more hopeful mood for the rest of the day. The only thing I can compare it to is like before I got married and I had a crush on someone, and if I got an email or a phonecall from him I was SO happy the rest of the day, at least for that day or whatever. It was the same thing with IF, if I made contact with a clinic/testing/agency that day, then I felt like something got done and I was maybe one more mini step closer to the goal. But it only lasted for a day or so. And then I had to start all over again once the high wore off. Who can live like this? What type of life is it?

On the topic of looking back, when I think back to when the twin's were born it's amazing how much my feelings, emotions and thoughts have drastically changed from when I first met them. I mean, I had no clue who they were, or come to think of it, what to even do with them!! I loved them, but now it's a ridiculous type of love. Just now my dad was holding Princess so I could go take a shower, and I had to literally pull myself away from her. I just keep leaning over and kissing her little rosy chipmunk cheeks, I just couldn't get over how adorable she was. And, I STILL can not get over that these are my biological children. STILL. I am so, so grateful for this gift, every single day. Don't take that the wrong way- I don't mean that I wouldn't have been grateful if we had a child via DE, DS or adoption. I just mean that I had accepted the fact that I would never have a bio child. It took a year to get to that point, but once I did, I did. And then to do such a turn around from a donor egg/donor sperm/surrogate cycle to what we actually have...talk about a mind fuck. So, every single time someone says to me that Peanut has DH's eyes and Princess has my lips, I just offer up a little prayer of thanks to tell the universe how grateful I am, and that I appreciate every single moment with these two. (One time, even, in the midst of a meltdown, I was holding a screaming, taunt baby and looking straight down into his open mouth and appreciated the fact that his mouth and gums were formed normally, that all looked great, that everything was in working order!) But yeah, when I look back to those first six weeks before I truly began to bond, it's quite an odd feeling. Even when I look at pictures, I have no idea who those babies are.

So, now to discuss my previous post. I want to thank all of you who reached out via comments and emails. It seems like the over riding theme is to stay, and something that every single person wrote was how I keep it real and tell the truth. I'm assuming that most bloggers don't do that, or if they do, they sugar coat it a little bit. I could never do that- what's the point of blogging and trying to help others in the same situation? So, I am happy that you guys all appreciate that and I really don't want to change my M.O. So, the deal is that I'll keep blogging as long as I am true to myself, but if/when I start feeling pressure for expressing my opinions, then I'll stop. Please don't take this as an ultimatom or whatever, I was just getting sick of feeling bad about myself.

So now I want to get back to my delicious babies. I am the LUCKIEST woman in the world that these two chose me to be their mom!

The Future (of many things)

The Future (of many things.)

Ok, I am at a crossroads. Lately, I have been delaying uploading posts because frankly, I fear the wrath of your comments. I dread getting the email alerting me that someone posted, or seeing an email in the address I use for the blog. Sure, some of have been understanding, but many have not. I understand, know and appreciate that your comments and concerns are out of love and caring for me, but sometimes it's ok not to agree with me and you don't have to let me know.

So, I don't know how to do bullet points yet on this computer so I'll have to number them. I want to talk about the future of this blog and the future of my involvement in IF and Celiac awareness.

Part One: I have been doing a boatload of IF/Celiac stuff that I have not mentioned on here, for the simple fact that there is so much and I wanted to be more concrete when I talked about it. Now I realize I should have talked about it much earlier so you could have gotten a better sampling of me mentally, and how I'm really not this bitter angry IF vet (although, if I was, I'm damned allowed to be.) When I get involved in something, I get INvolved. Take for example all my YouTube videos (which at this point have more hits than there are seats in the University of Michigan's football stadium, according to DH. So that's a lotta hits!) Or, me putting together groups of local IFers so we could all support each other. Or, going to Washington, DC two times to lobby for health benefits. Or, being active on websites and trying to help as many people. Or, creating the three Facebook albums showing the typical day in an IFer, or going through a surrogacy, which I have sent to as many people as possible who hopefully forward on. Or, my story on ivfconnections to hopefully help another couple experiencing what we did. Or, this blog.

Ok, you get it. So, the same thing goes with Celiac awareness. I've been working my butt off doing the following:
1. The American Fertility Association found me via this blog and on their own have been wanting to also somehow get the word out about IF and Celiac. So, I've been speaking to one of their directors and we have decided to partner up. The AFA creates educational videos and worksheets on a variety of IF topics which are posted on their website, and our goal is to create a Celiac one that we can post but also forward to as many RE's and GI doctors in the country (the world!) So, I have been contacting specific RE's asking if they will be interviewed for this video, and I contacted an old friend who works in video editing to see if he can help out for free (he will.) However, it still costs between $6 and $8,000 to produce a video (also dependent on where the doctors are located), which means we need to fundraise for this money.

2. I have a background in fundraising for non-profit institutions so I happen to be especially suited for this task. I've been researching the myriad of Celiac organizations in this country and making lists of people and contacts so when I am ready to go for the "ask" everything is all set. I also want to get these organizations on board with what we are doing in general, to help again spread the word about the relationship between these two diseases.

3. "My Story" on IVFC had been forwarded so many times that it eventually made its way to a woman who's daughter went through IF. She was so touched by our story that she decided to make a donation in honor of my children's names to the charity of my choice. Of course, at first I thought about RESOLVE, but then it got me thinking....

4. ....why can't I create my OWN small organization? Again, I'm not quite sure what I am thinking about yet, so I've simply been calling it The Infertlity/Celiac Consortium. I want to use this as my homebase for all the ideas I hope to achieve one day. I spoke to the woman who would like to donate in our names and it turns out she happens to be an extremely philanthropic person and really liked my energy and ideas. So, there may be a partnership there.

5. Dr. Oz and The View: I can't remember if I mentioned this here yet, but the producers at the Dr. Oz show were taken with my story and are interested in having me on as a guest. Additionally, one of my aunt's best friends is a famous news anchor here in New York and he happened to be interviewing Oz a few weeks ago for a segment, so I wrote up a quick summary and he personally handed it to Dr. Oz himself. Fingers crossed. I have also contacted The View (because it was Elisabeth Hasselbeck talking about Celiac on his show), and someone actually forwarded the producer's personal email to me so I can contact him directly. Again, the more people/the wider the audience, the better we can get this message out.

6. Whenever I see an opportunity to get this story told, I jump at it. For example, the moms of multiples group I belong to here in New York has a monthly newsletter and the president asked me if I could write the opening article. So, I wrote up a semi-short summary of what happened, preached my gospel about friends and family members demanding a Celiac panel if they have unexplained IF and/or unexplained repeat miscarriages, and I also spoke a bit about what the club means to me and how I find great support in it.

7. A longterm goal is to present at the ASRM's annual conference one year, hoping to reach as many RE's as possible at once. However, you need to have a case study in order to do this. A few years ago there actually was funding to study the effects of Celiac on infertility, but unfortunately the money ran out. Big names were attached too- Harvard, Cornell, etc. There is a Swiss pharmaceutical company that developed a much more efficient blood test for CD and the AFA was working with them on this study, but no luck. Perhaps we can try and revive that, as we must get a study in order to present at ASRM.

8. But even with no study, there is still a lot of awareness and education we can do from many angles- from contacting all the Celiac societies, to contacting GI's and of course infertility centers.

So, yeah, I've been busy. And at this point I'm not doing as much as I would like obviously because the twins are awake much more and I don't have any help, so I can't get on the computer except at night. My 15 year old neighbor is very interested in becoming a mother's helper so I'm considering hiring her a few hours a week so I can get stuff done around the house as well as make small, baby step dents in this massive adventure I have dedicated myself to. I can't live with myself knowing there could be even one couple out there going through needless treatment after treatment after treatment.

Part Two:
1. This is my blog. Not yours. Hence, my life and experiences through my lens.
2. I'm allowed to be angry if I want. The same way I am allowed to be happy, or sad, or depressed, or ecstatic, or whatever emotion if that's how I feel at that specific moment, in response to whatever situation is currently being presented to me.
3. There is nothing wrong with being angry. Nothing. I just emerged from fighting a five year, needless war. Healing ain't gonna happen over night. If anger helps spur me to do any of the above mentioned points in Part One, then great. I promise that I am not pacing around my house in a bathrobe trying to figure out how to enact revenge on the RE's of the world.
4. If you had a good experience/found success at one clinic, then great. How is me talking about MY experience on MY blog somehow denying the fact that you had a good experience at the same place? What can I say except that if you want to read about someone having a more positive experience at a clinic, go read her blog and not mine. My words here aren't life changing for anyone; it's just how I see it through my eyes.
5. Stop telling me how I "should" act and how I "should" feel. We all know there certainly aren't rules when it comes to how you "should" feel in life, and everything is uncharted territory, so you telling me all these "shoulds" does absolutely nothing for me except make me feel like a) crap or b) guilty for something or the other. So, no thanks.

So, what does The Future hold for Sunshine? Dunno. I may switch this blog over to only discuss my IF/Celiac Consortium and use it as a way to keep track of progress. Or, maybe I will completely self edit myself and only talk about puppy dogs and rainbows and not reality, with a running list of how much the twin's weigh and how many times they pooped last week. That's sad, because I've had a lot of women reach out to me, thanking me for keeping it so real about what life as a mother is like after 5+ years in the trenches. I've never covered anything up from my readers, but after getting some pretty harsh comments and emails basically telling me what a lousy mother I was, or that I wasn't doing enough of this or too much of that, or why am I feeling/acting/doing X, Y, Z, well I'm done with it.

I'll see how this goes. I am away visiting my family for a week or so and if I get just one more negative email while I am here, and it makes me sad for even one minute during my few precious days with my far away family, then show's over and the circus will have to find a new town. I don't mean to come across as harsh, narcissistic or egotistical, but this has been bothering me for months now and I finally had to say something, and I truly hope I didn't just alienate those readers who happily log on to read the misadventures of me trying to figure it all out, one day at a time...

Love,
Sunshine

Transversary Day! (And, I hate Cornell.)

 

(Sorry about the odd format for this post- I have a ticket into Typepad to fix it!)

One year ago today three embryos were transferred into Kelly and two became Princess and Peanut!

omg, they are so freaking delicious now. I have to literally stop myself from giving them too many lovebites. They both love to be bounced, especially to a rhythm, and they throw their heads back and give me this gianormous grin and sometimes even giggle. It is pure joy, the type only a baby could experience. All they know at that moment is the thrill of being bounced up and down and having the person in front of them make silly noises and faces. Why can't we always stay like this?

So, it makes me sick to even type these words, but I have to call C-C-C-ornell. I can't afford the $1,000 a year storage fee for the three embryos from the DIJ cycle. DH wanted to get rid of them forever ago, I just *literally* haven't been able to pick up the phone and dial that number. I can't tell you the fear and sickness I feel when I think about the voice message that comes on at first. I can't even stand to hear that woman's voice. I don't EVER want to hear "Thank you for calling the blah blah blah Center for Infertility/ Or Whatever Center for Reproductive Medicine." 

I decided I just had to do it. I grew some balls and typed the letter "C" in my cell phone and guess how many Cornell telephone numbers came up as stored in my phone? NINE. I had the main number, then Span.dorfer's number, my nurse's direct number, the donor egg team, my donor egg coordinator, the second donor egg line, the billing department, the lady in charge of co-culture, and finally some random coordinator who I think did a bunch of stuff. I am so so disgusted. Not to mention the plethora of all the other doctors and coordinators and nurses from the four other clincics I went to whose information is still taking up precious digitialspace on my phone.

I have been wanting to purge my phone of all things ART for a loooong ass time. But for some reason I can't. What the hell am I waiting for? Dunno. Maybe I'll need it one day and I already have all these direct numbers which puts me at an advantage. I can "skip the line," so to speak.

But uggghh SO annoying.

Anyway, so I dialed Cornell and I just fucking hate it. I swear, they even have an awful ring. The lady who picks up tells me I need to speak to whoever about discarding my embryos and she puts me on hold to transfer me. I have this clear image of the huge office and my call being flown from one side to the other. I can see every single detail so clearly. The colors of the office, where all the doors are, the three hallways of u/s rooms. PUKE.

Of course the lady wasn't there so I left a voicemail. Of course she hasn't called me back yet.

Here's the thing- I said I would donate them back to Cornell for research on the caveat that the doctors start understanding the connection between Celiac and IF, and I demand that two new questions be put on their new patient form: 1) Do you have a history of unexplained stomach issues? 2) Does anyone in your family have a history of unexplained stomach issues? At least it can get the conversation started; a patient can say that why, yes, she does have stomach issues- why are you asking this? And then a good doctor should reply, "Well, Celiac could be....." If someone had asked me that one simple question...

I don't know why all my anger is directed towards Cornell and not the other clinics. I guess because it's supposed to be "the best." I can't help feeling that they FUCKED ME OVER. THEY MISSED MY DIAGNOSIS. I was put through HELL for NO FUCKING REASON. And I want them to pay for it. Things need to fucking change around here.

I can't stress it enough- THEY MISSED MY DIAGNOSIS. Are you kidding me? Are you serious? FIVE years of unnecessary medical treatments? That sounds like malpractice to me....yeah yeah those are strong words and I'm sure it's not true, but damn that's how we all feel.

I'm in an angry place again (can you tell?) It was triggered by just simply thinking of them. I realize now that this is one of the reasons why I postponed contactingthem, even at the cost of $250 every quarter. I knew it would bring up all these emotions again. And, it did.

So, to make myself feel better, I started writing the letter I have been meaning to send to all of them for some time. It outlines everything I did at Cornell and then what happened, and I phrased it as an educational letter to draw awareness and make sure they are aware of this for future patients. I felt better after I wrote the first draft.  I am sending it directly to Roszen.waks, and I am cc'ing all the other RE's as well as the entire Board of Trustees. Yep, I want my message heard.

Anyway, I am leaving tomorrow to visit my family and my mom and sister FINALLY get to meet the twins. I'll probably be down there for about ten days or so, and I'll check in after! Here is an adorable picture of the twins! 

PS- For those of you who have crossed over, did you ever purge your cell phone? If so, how long after your DC arrived?

PPS: I tried to donate the embyros to the University of Michigan's new stem cell lab and I was all excited. However, right now the law says they can not accept embryos that were created from a donor egg or sperm. Sucks! I'd MUCH rather give them to a research lab then Cornell who probably has too many to even handle. Contact me if you are interested in getting UM's information.

PPPS: Edited To Add: OK, I'm trying to get to the root of why I am so angry at Cornell and not the others as much. I think I'm not as angry at RMA, my first clinic, because it was my first clinic and they aren't as "good" as Cornell. Secondly, I sent a very detailed email once Kelly was halfway through the pregnancy to Dr. Span.dorfer with a detailed outline of everything that happened, and that it was imperative he know this information and share it with the group. I assumed I would get an email back from him, at the very least a "congrats, that's great news," as I used to receive emails from him when I was a patient there. But...chirp chirp chirp, no response. And I wasn't in the right place mentally to pursue this while Kelly was still pregnant and I was scared shitless all the time. Third, as I mentioned above, they are supposed to be THE.BEST. I'm sorry, if you have the balls to charge what you charge for a fecking ultrasound, let alone an entire IVF cycle, you better either put up or shut up. I expected more, I still do. We go to these top clinics with our hearts on our sleeves and we TRUST them with our lives, our futures, our finances. I feel betrayed by them. As mixed up as that may sound to some of you, it's how I feel right now. Fourth, I don't blame SIRM because I feel like they understood, they "got it." We had numerous conversations with many doctors and nurses, they all listened carefully and took my story to heart. I know I enacted change at that clinic, by the very nature of what kind of clinic they are, their "personality," which is much more open and caring. It's the opposite of Cornell where you often feel like just one of many cows in a diary farm. I don't know, it's hard to explain, but it's just different- they are snobby at Cornell, it's hard to get in touch with anyone, they have all these rules and regulations, they know they have a waiting list up the gazoo and perhaps they don't care if you go elsewhere for treatment, so that gave me a cold heart when I look back on my five year IF career. So I think that's why my anger and emotions are geared more towards NY's Upper East Side then anywhere else in the country....

 

Happy One Year Conception Day, Twins!

 

One year ago today was my egg retrivial in Texas. I can't remember how many eggs they got, but I remember feeling ok about it. We went home the next day and I got the fertilization phone call while we were boarding the plane. Again, I remember being happy but not ecstatic. Which makes it all the nuttier that TWO were normal and stuck around....It's so crazy to think it's been a freaking YEAR.

So, in honor of their one year conception anniversary, we tried rice cereal for the first time today! Amazingly it went perfect. Both of them "got" the idea of the spoon and didn't try to thrust it out. I have some ridiculously cute pictures of them eating, but I just switched over to a Mac and I have no clue how to use Iphoto yet.

They have become so much more fun, they love to "chat" and make these cute talking noises. We get smiles all the time and we love it! The amount of cuteness in this house is just over the top between the twins and our doggie.

So, I know this is such a lame post and I actually still have some deep thoughts about being a parent after IF, but its getting harder and harder to write the posts, as much as I want to! They are awake much more during the day, which leaves less time for anything else, including computer time. I have this whole Celiac/Infertility Consortium I want to begin and the American Fertility Association has partnered with me on it, but it's just impossible to do any sort of work if I don't have a babysitter in the house with me (I haven't had a sitter yet). I have lots to talk about this topic but I'll leave it for another post because I actually want your advice on some things. Oh, and I had a wonderful, special first Mother's Day. So many people made it a point to come up to me or email/call me for Mother's Day since they knew what a big deal it was for us. Mother's Day also fell on our 7th wedding anniversary, which made it even MORE awesome!

Anyway, I'm going to try and leave you with a picture! I promise, more soon!

 

If you live in New York State!! READ AND ACT!

Help us pass an IVF bill!

 

We need your emails TODAY! I started writing a regular blog post but then found out about this. Here is the information:

 

This week Senator Gillibrand will be introducing the very essential "The Family Act," which will provide a tax credit for infertility treatment. We would like Senator Schumer to join her as an original co-sponsor. If this issue is important to you or a loved one, I urge you to email Senator Schumer to support The Family Act. Please email at meghan_taira@schumer.senate.gov. We need to get this moving and thank you!

 

Emails need to be in TODAY! All you have to say is something to the effect that" infertility patients need access to affordable health care and this legislation will help make treatment more affordable. I urge you to support Senator Gillibrand in The Family Act providing a tax credit for IVF treatment." And put "The Family Act" in the subject line.

 

 

 

Here is what I wrote (but you don’t have to write as much as I did)

 

Dear Senator Schumer,

My name is Sunshine and my husband and I underwent five years of infertility treatments, including six intrauterine inseminations and a whopping 11 In-Vitro Fertilization cycles. I was only 30 years old when we started this journey, and we were diagnosed with "unexplained infertility," as the doctors could find nothing wrong. We just kept pushing forward, always hoping the next one would be the one. I got pregnant four times and lost all four babies, one devastating one at 20 weeks which was the result of my 8th IVF attempt.

 

My health insurance covered medications which was amazing and we are incredibly grateful. However, each IVF cycle cost us about $13,000. That's money that could have been put toward a house, or a college education one day, or goods and services in New York businesses. Why are these treatments not covered by health insurance? We didn't ask for this disease, just as someone with diabetes didn't ask for that disease. If a man's sperm is misshapen or a woman's uterus has a septum, this is a medical issue and should be treated as such. Also, if health insurance will cover the termination of a pregnancy, or birth control to prevent a pregnancy, why does it not turn it around and cover the conception of a pregnancy if assistance is needed?

 

Because insurance does not cover IVF, couples are forced with awful decisions- namely, to transfer back more embryos than they should because they simply can not afford another cycle. This often results in multiple pregnancies, which actually costs the health insurance companies more through high risk doctors, additional OB appointments, NICU stays, physical and occupational therapy, and strains on the educational system if students need state services. This does not make financial sense.

 

 I urge you to support Senator Gillibrand in The Family Act providing a tax credit for IVF treatment. You will be changing our lives. 

 

Help us build our families, Senator!

 

Sincerely,

Sunshine