Friday, April 11, 2008

Infertility, The Other -ism

When I think only of my own situation and the friends I've lost over the years of dealing with infertility and recurrent miscarriage I get down and wonder what I did wrong or how I could have maintained a 10+ year friendship with such uncaring people. I mean I was there for them during their pregnancies and NICU stays with the preemie babies and all the other things life threw their way. Why did they drop me from their lives after the last miscarriage and ensuing 2 years of not being able to get pregnant again?

Last night it hit me. It's like that commercial that says "Pork, the other white meat." It's "Infertility, the other -ism." It's like racism, sexism, age-ism, any case where people discriminate against those who are different than they are. So what do we call it? Fertilism?

A former colleague used the term PLU as a code for "people like us." I thought it was rather crude, but it did hit home that human tendency to want to surround yourself with others who are just like you. Personally I don't get it because I like learning new things and being exposed to different viewpoints and experiences. My husband and I chose a very diverse community in which to live for that very reason. However, it does help me get why those friends of ours who went on to build their families with 1, 2 or more kids eventually felt we didn't belong in their circle anymore. I guess in a way it makes it less personal, and I don't have to wonder what I did to lose their friendship.

I do have to say that "fertilism" is as ugly to me as racism, sexism or age-ism. I mean, it's not really within a person's control to be more fertile any more than it is to change the color of their skin, choose their gender or turn back the clock. Maybe it's time for another kind of revolution. One where we infertiles of the world stand up and demand our rights to be treated equally, to not have to hide our status, to not have to pay outrageous amounts of money for treatment because insurance companies won't offer coverage, to not have to sit back in silent pain while our fertile friends cast us aside like the onsies their kids have outgrown. Maybe it's time for our Million Human March or our Infertile Pride Parade. What do you think? I'm tired of being a second class citizen when it comes to my fertility!

Monday, February 18, 2008

Paternalistic Doctors

Paternalistic doctors drive me crazy! They make hard situations even harder. Today I'm speaking of my endocrinologist. Any of you out there who are also dealing with hypothyroidism will no doubt be able to relate to my frustration. I was having some pretty unmistakable symptoms like more frequently freezing hands and feet, more dry hair falling out more often, episodes of extreme cold and an inability to get warm while others in the same room are perfectly comfortable and feeling like I had a rock in my throat (right where my dysfunctional thyroid is located.) After not being able to get in with the doctor (over a month 'til her next available appt.) my husband succeeded in getting her to order blood work to check my levels. At my last appt. she told me that her goal was to keep my TSH at 1. So she calls today to tell me that my thyroid levels are "just perfect!" When I ask her what they are specifically she tells me my TSH was 2.5. WTH? So I say, "I suppose you don't believe that was the cause of my symptoms then." Of course she doesn't!! Then I tell her that I have an appt. for 2/26 and that I don't believe my level is good at all for ttc and want her to know that we're heading into our first IVF. So she says, "Well good. We'll talk about it then, and hey, maybe I'll even adjust your dose since you're doing IVF." Thanks for the favor, doc! I felt like I should be up on my hind legs begging with my tongue hanging out. Hey, she just dangled a bone in front of me right? Maybe she'll even adjust my dose. If you actually remembered a damn thing about me and my case you should be upping my dose since my levels are 150% higher than your stated goal for me!

You know, when I'm fighting IF, depression, hypothyroidism, blood clotting disorders, and the obesity that comes along with some of the aforementioned conditions the last thing I need is to have to fight the doctors I've hired to help me. When will more physicians learn that many of their patients actually know their own bodies and are a valuable partner in determining their own best treatment? Needless to say, it's time to find another endocrinologist.

Friday, February 1, 2008

"We will file with your insurance company."

Were sweeter words ever heard by an infertile? I couldn't believe it today when I called the office of the Reproductive Immunologist I want to see. The woman in the billing office said, "Yes, we do participate with your insurance. I'll file it for you and fight with them if they don't want to pay for a certain test or service." **Jaw drops and eyes open a little wider as I try to figure out if my hearing is okay.** Then I hear myself saying at an embarrassingly high pitch, "REALLY?"

I can't remember ever feeling this happy while talking to a person in the billing office on this long and expensive IF journey. At least for today, for this moment I feel like the universe is smiling on me, and I can relax just a little and believe everything may work out. If I can get my records copied and the new patient info. out to the clinic quickly, DH and I may even be able to make a little Valentine's Day getaway out of our trip to Chicago to see this doctor. Aaah. I'm not even going to imagine anything that can go wrong right now. Something went very right today, and I'm going to enjoy it. I hope each of you has something go right soon so you can relax and enjoy life just a little too!

Tuesday, January 29, 2008

A Ballpark Frank

That, my friends, is what the radiologist who did my last HSG told me my uterus looked like. I may not know much, but I do know it's not me who's supposed to have the weenie! I've been told by my OB/GYN after transvaginal u/s that I have a heart shaped uterus. He never mentioned it could be a problem so I just thought "Well, that's nice. Even though I've miscarried all my pgs even my uterus has so much love to give that it's shaped like a heart." Isn't that sweet? Turns out it's not.

The report came back from the HSG with the conclusion that I have a bicornuate uterus with a very wide something-or-other. Basically the two horns are very spread out from each other. The radiologist suggested a MRI to rule out a septate. When my RE got the report he asked me to get copies of the film for him for both this latest HSG and the one I had 5 years ago (which by the way said I had an unremarkable anteverted uterus). After viewing the films the RE said I may have a slightly bicornuate, or actually arcuate, uterus but he is certain I don't have a septate. He went to great lengths to show me this via dildocam, but honestly, it all kind of looks like blobs of black and gray to me. He went on to say that an MRI wasn't necessary b/c there is no way he would operate in my situation. Okay. No operation needed? Excellent!

Well, maybe not. I've since learned that an arcuate uterus maybe isn't really a diagnosis in the strictest since. I guess the accurate diagnosis would be bicornuate albeit a mild version. However some contend that there is no way to rule out a septate 100% without a combination lap/hysteroscopy. For my upcoming IVF I had a hysteroscopy and the doc (new RE in Colorado) said it looked great. However, I'm getting him a copy of the HSG CD and will have a follow-up to go over all my results on 2/6. In the meantime I've given a shout out to the ladies at the Yahoo Mullerian Anomalies board to see what their take is. I was given the advice to do this by the kind author of A Uterus Divided .

Anyway, I hope to hell I get some answers before I go totally crazy with worry. In the meantime I keep gaining weight instead of losing like I need to in order to improve my odds of success with the IVF. Damn the emotional eating, but that's a post for another time.

Saturday, January 26, 2008

Why Do They Die?

Don't I at least deserve that much? To know why, the cause, the reason my babies die. It's absolutely maddening to have doctor after doctor say, "Well, you do have the MTHFR and the Hashimoto's hypothyroid, but I don't believe that is the cause of your miscarriages." Well, the two we had tested were genetically normal males so that rules out "natures way" and the off chance that the lab grew my tissue instead of the babies'. What do you believe the cause is then? "Sometimes we just don't know." WTF?!

The last time I got this information was a couple of days ago. Did I have a doctor's appt.? No, I got the pleasure of reading it in a report that the perinatologist sent to my OB/GYN. I had gathered some final records to send out to CCRM in preparation for our IVF, and there it was. The cherry on top of that crap sundae? He says maybe I have some generalized autoimmune disorder that they haven't diagnosed yet, but the fucking pernatologist never told DH and me that during our meeting with him! Did he miss the part where I said I would do anything possible to avoid another miscarriage? After all the fucking tests, blood draws, poking, prodding and humiliation I've been through thus far did he really think I'd turn down doing some more if it could possibly give me an answer?!

I hate this because I'm not even technically his patient. He only treats women during pregnance, and I haven't been able to get knocked up again since we lost the last baby in July '06. I just had an appointment with him pre-emptively because I need care for the MTHFR from the very start of a pregnancy and my OB/GYN thought I was too difficult of a case for him to adequately follow. My RE passes you off if you miscarry which royally sucks since my body just doesn't let go and I end up having to see another doc just for a D & C. So I don't relish the thought of having him be my only physician and going through getting passed on during such a horrible time. Who the hell wants to call up a doc and say, " I haven't seen you in a while, but I seem to have failed another one of my babies. Could you squeeze in an appt. to scrape this one's remains out of my useless uterus?"

So, now what? I guess I'll have to try and get the perinatologist to see me again and ask what other tests we can do. Or I can try to find a rheumatologist or someone to help me figure out what to do. I know their are Reproductive Immunologists out there, but I just don't know that I can emotionally or financially afford their testing or controversial IVIG treatments. Not to mention that they are all out of state. I hate feeling so helpless. The pain and fear are sucking the life out of me.

I'm so fucking tired of this. And DH is out of town again, and I just told him off on the phone for the second time today. I feel so alone, and I'm just losing it here. How does anyone make it through this with a good outcome?

Thursday, January 24, 2008

Feeling a Little Alone

Nothing particularly witty to say today. I'm just sick of DH having to travel for work all the time. I'm finding embarking on IVF hard enough to deal with, but only seeing DH in what appears to be the revolving door our home has become is making everything worse. I know so many people have it worse than me with husbands deployed to Iraq or going through separations or divorce. It just doesn't make me feel any better. It also seems like the more he is away the less likely I am to get close to him or really communicate about what's going on when he is here. Maybe I'm pissed at him deep down. I'd hate to admit that since his job pays the bills around here. No one ever said emotions are reasonable though.

I've been waiting for what seems like forever to have our regroup appointment to get this IVF on the road, and I just had to push the appointment back a week b/c DH won't be here. Sometimes I just want to throw my hands in the air and say forget it! This is too much for me to go through without some serious support. He just got home, spent the whole weekend sick, was going to take Friday as comp time to have a long weekend together and now has to attend a funeral out of town before leaving on business again on Tuesday. We don't have anyone to watch the dog on such short notice so I can't even go to the funeral with him. 2008 has not been too good on our marriage so far. As I write this I feel petty and stupid, but there you have it. Is it just the IF talking?

Sunday, January 20, 2008

I Can't Believe It's Come to This

How many times do you think people dealing with infertility say that phrase? I uttered it to my husband just this morning while I was waiting for the nurse to draw my CD3 bloodwork-- FSH, LH, E2-- so they could then ship it off to CCRM for analysis. How did we get to the point that we were up last night reading a book of instructions about how to freeze this container, but not that one and to make sure the nurse uses this red top tube, but not the other... all so we could get some blood drawn, pay to have it shipped 2,000+ miles across the country, so a doctor out there can tell us what happens next in trying to conceive our child. What happened to some dinner, a little romance, and a fun roll in the hay?

The miscarriages were a big enough shock to the system. Having my last one after taking thyroid meds, enormous amounts of folic acid, B12, B6 and even Lovenox injections to thin my blood sent me over the edge. But now we not only have to do IVF to get pregnant, we need genetic testing on the embryos to do all we can to avoid another miscarriage and thus another breakdown. The FSH/IUIs didn't work despite the fact that we had 5 - 20mm follicles on trigger day and 150 million beautiful post wash sperm for the IUI. How the hell did that happen? I mean, we should have been one of the lucky ones to get twins out of that deal, right?! The nurses were even looking at us like we were going to end up with multiples for sure and "did we know what we were getting into?" But, the doc said we had 3-4 shots with IUI before we'd need to move on to IVF, and we'd been pregnant together 3 times before. My last two miscarriages were tested and shown to be chromosomally normal males, so my eggs weren't crap yet. Right? This protocol gave us an excellent chance, right? Wrong! When I tried to schedule the next IUI I was informed that my RE wanted a consult with us about where to go next. Oh Boy!

So, after our discussions with him, and finding out our insurance only pays a lifetime limit of $5K for fertility treatments we are now going to Colorado for our first IVF. (How's that for optimism? I'm talking about our 1st IVF because surely we'll need more than one. Ugh!) It's more expensive there. I doubt we'll make it out without plunking down at least $20K. Never mind the $3K we've already handed over for a ton of testing they require. But we're supposed to have a 3 fold better chance at bringing home a baby with them. Of course no one really regulates the stats that are posted on SART, so who the hell knows. But that's our decision, and we're sticking to it.

Now that I've answered my own question I guess I'll log off. I know most of you are probably still wondering how you got to the point you're at now too. Feel free to give a shout out and share your story. Misery loves company, you know!