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!

Friday, January 18, 2008

Depression's a Bitch

And her ugly stepsister, Anxiety, isn't much fun either. If you've never been depressed it's like trying to walk through mud up to your neck. It gets in your eyes too. It's hard to see things clearly, to believe that life is good or that you're good or that things will be any different than they are in that moment. On the days that depression takes a break there is Anxiety waiting to do her thing. You finally have some energy, but you are so worried about how things will turn out that you just can't seem to make a move. Every decision is enormous. Even the things that couldn't matter less feel like they are huge. So you get stuck. Who wouldn't? Just think of all the decisions you have to make every day, from what to wear to how to respond to someone or what to make for dinner. What if they all felt like they were important? Pretty overwhelming. Then you beat yourself up because you can't even get through the day to day things everyone else does with ease, and the negative thinking sends you right back into Depression's dark embrace.

Therapists have skills to teach to help you avoid getting sucked into the cycle, and that works great sometimes. Kind of like Harry Potter using his Patronus to avoid the Dementor's Kiss.* But then Life happens. Someone dies, you have to put your beloved pet to sleep, the inject/IUI fails, and you get the picture. It's damn hard not to slip and fall when those times come. I'm finally learning to be thankful when the time it takes for me to get back up is much shorter than it used to be. That bitch, Depression, would have me just see the negative, and Anxiety would have me believe that my life will always be this way and worry about how I haven't fully recovered. For today, at least, they can kiss off. I can see the light baby. I'm doing okay. I'm getting my CD3 bloodwork done Sunday and am that much closer to my follow-up with with Dr. Surrey at CCRM and getting my schedule in place for IVF!!

*If you haven't read the Harry Potter series, you should give it a try. I read the first several books when I taught elementary school so I could talk with the kids about them, but continued on because I really enjoyed them!

Tuesday, January 15, 2008

Ghosts from Past Lives

No, I'm not talking about reincarnation. I'm talking about those times when people from a period in your life you were happy to leave behind are regurgitated into your present like some bad meal that didn't go down well the first time. In particular I'm thinking of high school. I know, some people just loved high school and are still BFFs with their childhood playmates. Well I'm not one of them. Come on, knowing that I'd been through a date rape, unplanned pregnancy and abortion turned miscarriage by the spring of my sophomore year did you really think I would be?

Here's the thing. I know given what I've shared of my story and not knowing me from Adam you could easily have this picture of me in your head that screams trailer trash, drop-out, sad, sad loser. Well, guess again. I've got a post graduate degree and was on to my second career at 30. The thing is that in high school I was also the cheerleading, honor student, president of the student council that never lacked a date. I kept my dark secrets to myself. After the harrowing incidents with the monster boyfriend I also became a big time party girl who drank and toked her way into sweet oblivion every chance she got just to try and forget. To forget what happened and to forget all the crap that was waiting for me at home. So while my classmates were voting me Most Likely to Succeed I was doing my best to duck out of life. Add this all to the fact that my parents moved me to a po'dunk hell of a tiny town at the beginning of junior high. A place where those planning on leaving for university at the end of their high school career were a minority. And now you know why once I got the hell out I never looked back.

Fast forward 10 years, and thanks, Mom, for giving my current phone number to anyone who asks for it. Do you not remember what that time of my life was like?! Well, it was a kind of weird Sybilesque dual existence, but really the dark side was the more real side. Isn't it always? I made it clear that I didn't wish to participate in a reunion. Well, maybe I made up some bullshit excuse because that annoying part of me that just wants to be liked does still crop up at the worst times. Plus the person that called was a sweet guy who I guess was considered a big nerd back then, but that I considered a friend. ---That was probably the other thing that made life hard in high school. I never could get with the whole ignorant, hateful clique thing and had friends from all groups. Of course, when you try to fit in with everyone you end up truly fitting in with no one. Hiding my secret shame probably didn't help my perception any. Why the hell would anyone really care about me?---

So, I dodged that 10 year bullet. It brought up the usual feelings of "has my life turned out how I thought it would"and all that crap, but didn't really bother me much. Unfortunately they came at me full force for the 20 year reunion. Yeah, 20 years! Aaaack! That sweet friend played my heartstrings and talked me into letting some people email me. I had a feeling the person who wanted to get in touch with me so much just wanted the scoop on what had happened with me. You know, "how's the girl who everyone thought would do so well really doing?" And "p.s. if her life sucks n0w then I'll look back on my high school years much more fondly b/c I won in the end!" I hate how petty girls and women can be. Did I trust my instincts? NO! So after an email or two, I got the "Wow, I thought you would have been a doctor or lawyer" some bullshit about how after her 1st son she had an ectopic and has been scared to try again so she can totally understand how I feel with all of these losses and NO KIDS, but so and so has a boy and a girl and so and so has two boys.... Then nothing.

Needless to say I didn't go to the reunion. It was in another state far away, and I would have been hard pressed to give an hour of my time to such an exercise, let alone an entire trip. I don't even have family there anymore. But of course that "sweet friend" called once again to tell me some footage from the reunion was up on You Tube. Curious idiot that I am I checked it out, and everyone looked so happy.

So, you ask, what's the big deal? People all over have a story like this. For starters the bitch who emailed me for her "scoop" and "shared my pain" over infertility and recurrent loss was so fucking pregnant she looked like she was about to pop the kid out on the spot! At 38, I've had so many people in my life pass me by with the having kids thing. However, at the time she was emailing me the reunion was only about 4 months away. Did she not know she was pregnant with her second child? Of course she did! That feeling of being duped, of trusting these people yet again ---( I won't even go into the backstabbing, lying, hurtful shit some of those girls put me through. If you haven't lived it I'm sure you've seen a bad high school movie or two.)--- and knowing that it was just for their sick gratification and that my infertility struggles were just gossip fodder for the reunion has left me reeling. Obviously. It's the middle of January, and the reunion was last summer. I don't know why I can't get over this. I know it's not true, but it just feels like everyone else got the kids and life they wanted, and I didn't. It really gripes my ass when I'm hurting and those who've hurt me in the past are happy as clams.

Does any of this make sense? Why do I torture myself? How do I just let it go?

Monday, January 14, 2008

From Abortion to ART

When I was a teenager I was so naive and desperate for love. Alcoholic father, overly critical mother and all that. For some stupid reason my parents let me start dating at the ripe old age of 14. Throw in a few Judy Blume books, some naive teenage fantasy, and the next thing you know the tender moment with the boyfriend who loved me turns into date rape in the back of his father's van. It wasn't violent in a way that he hit me or anything, but once you're literally backed up against the wall and terrified and you've said no for the tenth time there isn't anywhere to go. I had willingly gone to make out with him, and I'd never heard of date rape, so out of shame I didn't tell anyone. I was also so desperate to believe that the monster loved me that I continued to date him and have sex with him. After years in therapy I've learned this isn't that uncommon.

Well, by the time I was 15 I was pregnant for the first time. I was terrified to tell my mother, but somehow I managed. She kept it all hush-hush from my father which just added to my shame. He wasn't really involved in our lives too much even though he lived in the same house. He's not a happy drunk. I was convinced that he would just think I was a slut and want to kill me or something. Now I think my mother didn't want him to get angry and blame her.

Somehow I managed to keep that secret while still going to school and trying out for the cheerleading squad. I had some spotting but nothing that remarkable. My mother met with some doctors and she took me to have an abortion over my protests that I loved my baby. Mind you by then I knew what a creep the boyfriend was, and I didn't even speak to him anymore, let alone tell him I was pregnant. After the abortion the doctor told my mother that the baby had stopped growing weeks ago so essentially the abortion ended up being a D&C for a missed miscarriage. I never believed her until I was an adult and proceeded to have three miscarriages with my husband at ages 22, 31 and 36. The fact that I always lost my babies between 7 - 8 weeks and the two that were tested were found to be chromosomally normal males tells me that something's wrong with how my body works.

That abortion at 15 messed me up so bad that I was completely screwed up about my "right" to have a child up until a couple of years ago. I didn't believe I was worthy or could be a good enough mother. I now believe that's part of why I never went to an RE or pursued fertility treatments despite the fact that we took years to conceive each time. Of course there were other factors along the way, but that's beyond the scope of this post. So now here we are after some failed FSH/IUI cycles about to pay out $20K for IVF at a clinic that's half way across the country, no less. I can't freaking believe it's come to this. It's been a long road from abortion to ART, and I'm still so battered that I find it hard to have hope.

Sunday, January 13, 2008

Entering the Blogosphere

I must say I never thought I'd be here. Struggling to get and stay pregnant has changed my life in so many ways. This is just the latest addition to my coping strategies. Sometimes the thoughts and feelings seem like they are just going to bubble up inside me forever. Maybe sending them out into the void of cyber-space will help calm the storm somehow. I think I'd prefer to allow my story to leak out over time like it does in real life rather than write some sort of dossier of my life in this, my first and somewhat hesitant post. I think just enough to explain the title of this blog will suffice.

I've been pregnant 4 times in my life, and I don't have a single thing to show for it. Thus, I'm wondering "Oh, Baby, where art thou?" Where did you go? Why didn't you stay with me so I could hold you in my belly and then in my arms. You were loved from the start.

If you choose to share this journey with me then welcome. It would be a blessing if my search for baby could somehow comfort or help others along the way. If it doesn't, that's okay. I'm just looking for a way to stay sane on this insane journey through infertility and recurrent miscarriage.