Sunday, February 26, 2012

First round of tests for new medical snag in the road are completed.
Just waiting for results and what the doctor has to say.

If it's favorable, I get a medical clearance from him and return to my RE to finish the mock cycle / last IVF.

If it's not... well I guess we'll burn that bridge when we get to it.

I've finally brought myself around to the idea that the important thing here is that I am a mom... not necessarily that I am pregnant. Though a little part of my "dream" dies with that thought (there are things I will miss not being pregnant - some good, some bad - but still miss), I am finally to a place where I can consider other options.

I contacted an adoption agency to get more information. Based on some of my criteria, I know this is going to end up a very pricey endeavor. But... in the end... it's all worth it, right?

So much is hinging on these test results though right now, it's hard to think beyond them. To our last IVF chance (or at the very least some final "why me?" answers); to our steps following if this last IVF doesn't work.

One day at a time, I suppose...

Wednesday, February 22, 2012

Tick Tock

And just like that, the plan comes to a screeching halt.

It is what it is. I can do nothing about it, but go along for the ride and hope that things get resolved quickly and in a favorable light.

I need this news like I need another hole in my damn head. I understand the need, but it doesn't frustrate any less.

Plod along, deal with each problem at a time, tackle these new issues like I have in the past and pray that it's all a needless precaution and I can quickly get back on target.

It doesn't mean I don't want to just sit here and cry, though.

Tuesday, February 14, 2012

Valentines Day

I feel better for having a plan. It may not be the perfect plan, but it's a plan nonetheless.

We're going to move forward with the mock cycle starting end of this week. It will not be easy - a whole cycle of all the meds, culminating in a likely rather painful procedure. But, I'll have one of two answers I need to keep moving on. We're also giving one more shot to the IVF - with or without the PGD. Way I figure it is, if the insurance won't pay for it, doing it without, provided the biopsy comes back normal from the mock cycle, pretty much tells me all I need to know. Though the pain of another failure will be near unbearable - I'll have my answer and can proceed with a new plan feeling I've got all the information I can possibly get

The other appt on Friday may be more difficult for me to handle. You see... if you know me at all, you know I've struggled with a lot of GI issues. I'm now having some new symptoms and pains which could potentially point to something quite serious. I'm hoping the primary's theory is wrong; that he's ruling out the "worst case scenario before we look at other things. But it's scary to face, regardless, especially when faced with so much other uncertainty. But I've tried to remind myself - we've been through a lot of bad. A lot of "near tragic"... I can get through this like I got through everything else and we'll just have to take it one step at a time.

It's all I can do anymore - my life has spun out of my control far faster than I care for. But, it is what it is and I just have to learn to roll with (yet more) of the punches it throws my way and make the best with what I've got.

For those who may not quite understand why I'm waspish, aloof, estranged... I'll tell you this much. I blog only about half of what actually goes on in my life on a daily basis. I have been dealing with a lot of struggle.... but some of it I'm only now starting to face head on ... and others I've tried to avoid contemplating. Before you judge or whine or complain about my behavior, know this... you don't know even half of what I am dealing with.... so either love me for who I am, with all my quirks and faults and hardships... or walk away now.

I've discovered something very important lately. One - I have the most amazing partner a person could ask for. It may be difficult for him at times, but he has truly shown me what "unconditional" means; what standing up for and standing by your loved one truly is. On this romantic day of all days... though I am currently 600+ miles away.... I want to tell him each day that goes by, I love him that much more.

I've also discovered the reason why I have remained friends with one very special woman all this time - we "get" each other's crazy. And love each other despite (or maybe because) of it. My sister and more than my sister - you have shown me what friendship means and how a friend deserves to be treated. Thank you.

It's late (ish). I'm tired (very). And I do still have to focus on work tomorrow, despite two glasses of wine. So to bed with me; to maybe forget my troubles for another day or two and enjoy the peace I can find for myself wherever it may be.

Saturday, February 11, 2012

*tap, tap* Is this thing on?

So, how's this work?

After a night of nothing but tears, I keep coming back to "but I don't know for SURE my eggs are bad."

It's a guess... it means that every IVF is a shot in the dark and likely to lead to more heartbreak.

But I. Don't. Know.

It's that unknowing which makes me want to push on... to find an answer and hopefully get lucky along the way.

We're going to progress with a mock cycle in order to get an endometrial biopsy. It won't answer the egg question, but it will at least help answer the "are we even timing this right / is there an implantation issue?"

The egg issue becomes more complicated. More for financial reasons than anything else.

For those of you who haven't the vaguest idea of the process of infertility treatment, let me share some numbers for you. If you don't have stupendous insurance, most insurance companies pay very little or even nothing at all for actual IVF treatment.

When we started this process, the company W worked for actually HAD stupendous insurance. But when he switched jobs, that would go away entirely unless I kept up with COBRA. Considering the cost of COBRA vs the cost of fully out of pocked, we opted to keep only me on that insurance. At our expense.

So let's look at a cycle ON the COBRA for all our out of pocket expenses:
Monthly COBRA (regardless of whether I'm in a cycle or not it must be paid every month): $742.24
Cost of prescription pre-natal vitamin - (copay) $10/month
Cost of prescription folic acid - (not covered) $20/month
Cost of IVF medications & supplies (copay) approx. $100/cycle
Doctor's visit copays $10 x approx 5-6 visits per cycle
Close to $1000 for one cycle month (not counting non-cycle month costs)
There was also an administrative fee at the very beginning around $350, I think.


Now... remember... I was also unemployed during a lot of this time or working as a contractor which required me to take time off for bloodwork, ultrasounds, retrieval and transfer.

Cost for a cycle completely out of pocket: $20,000+

We're getting a bargain, right?

So now we're coming down to choices. Insurance will not pay for donor eggs (my BEST chance to conceive). Cost if my clinic has a ready donor: $22,600 (though it's POSSIBLE my insurance pays for my portion of this (around $6100, minus my copays, etc. So our portion then becomes $16000-1700). Cost if they do NOT have a donor and we need to go to an agency? Closing in on $30,000.

Donor eggs are out unless we put ourselves in debt.

To get the answer of "can my eggs even have a hope to survive?" we need to do what's called a PGD or embryo biopsy. Reading the jargon of medical insurance, I can't say for sure if there is or is not a circumstance in which this is covered. Let's assume not. Two cycles (mock cycle to check uterine lining and "real" cycle for transfer w/ biopsy) plus the cost of the biopsy  ($1500 to my provider; $3500-4000 to an outside lab).
 So roughly another $7500 out of pocket.

When you ask us to go out somewhere and we turn you down... it's not because we're mean or we don't like you... we can't afford it.

I saw some pages with PayPal donating buttons... I thought "Hmmm... good way to defray some costs... but how does that work from a financial/tax/legal point of view?" That thought was almost immediately followed up with - "Do I really want to beg my family and friends for financial help, which we may never be able to repay and air all this laundry to more than just the 6 or 7 people who probably read my blog?"

I don't know. I'm lost. Add onto this some potentially further bad news (or at the very BEST some "What the hell is wrong with me NOW" news) and I have to wonder what my great purpose is here in this world that the Almighty thinks it's worth keeping me around.

In my lowest last night, I came across a blog of a woman who is now facing the possibility of a life without children. She had a list of "things I'll never get to do"... it was truly heartbreaking. I don't WANT to be there. I don't want to face that. But, as I read somewhere else, when is enough, enough? How do you get yourself past this and move forward, especially, like me, you don't feel satisfied that you have all the answers yet as to "why."

Maybe I hold in my wallet the solution to all of it and that $310M will be mine tonight... a girl can dream, right?

A day full of heartbreak

Yesterday was not a good medical day. It was an even crappier "attempt to work" day.

I'm struggling... I'm faltering and I will admit that.

All of the little petty annoyances from earlier in the week actually served as a reminder of how difficult this particular struggle is and, though I have found some who can genuinely sympathize, we are alone in our togetherness.

And, some days, when the news seems most dire, when it's piled with other medical issues, other financial issues, other realizations that maybe just maybe you really have passed the "Mother" phase in your life and moved straight onto the "Crone".... all those petty little annoyances serve to remind you just how alone you are on the day-to-day struggle with your own emotions and your own body.

I spent most of my night crying... and by the look of it, a lot of today will be spent that way too.

I can't take any more bad new Universe. I know you think I'm strong enough to handle it, but I'm really not and I need a break. I can be rational and talk my way through Reason... but inside Fear is taking over and Heartbreak is making just thinking a struggle.

If it's going to be over, send me the means to accept it. If it's not, send me the means to make my dream happen and take away this struggle once and for all.
I’ve started to read a lot of blogs by women dealing with infertility. It’s heartbreaking sometimes, not just because their stories are sometimes sad and frustrating, but because I read them and all I can think is “yes… this is what I’m going through.” In a way, though, it does help sometimes. Really knowing there is someone else out there who is doing this because of an overwhelming desire which can’t always be put into words; someone who knows the pain of the shots and the procedures and the hormonal changes… and most of all the struggle of emotions through each cycle, holding onto hope only to have it lost.

There is a whole community of women out there, connected by this invisible thread of the internet.  And though the reasons may be different (or unknown entirely), we each have this common bond of wanting to be a mom so badly and finding it such a struggle.

Monday, February 6, 2012

All The Words

Had a bit of a cry last night. Sometimes, I look in the mirror and my thought process is... "My hair is grey. My scars are hurting. I'm closing in on 40. I'm old. My eggs are old. I'll never have a baby and that's why."

It makes looking in the mirror hard some days.

Days following often are filled with ways to put my situation in a positive light again.

Today's search came across this: http://www.chancetohope.org/p/blog.html. It's basically a "here's WHAT to say."

Yes. This, people. Pay attention here.

If you Google what NOT to say to an infertile man or woman, you get a lot of Top "X" things. And, yeah... just a quick glance through them, I have heard a vast amount of them. And you know what? They aren't necessarily meant to be mean or hurtful (though, some people can be that way, the majority of folks aren't doing it intentionally), but they are. They may not be intentional... but oftentimes they are not thought through either.

And I think that's where a lot of my bitterness has come from over the last year.

This process is hard enough as it is without feeling like you're being judged, doing something wrong or just plain stupid because you didn't think of X, Y, Z to get pregnant. This falls into the same pet peeve I have over people who, when faced with someone who has depression, responds with "well just stop being sad."

Infertility is a medical condition like any other medical condition. No matter how well intentioned your "advice" may be, really think before you put it out there to someone going through this. Because it's not as simple as "it will happen" or "just relax and stop stressing over it." And, to be perfectly honest, you just sound like an ass when you tell us this.

Why We Are Strong

Thanks to a friend, I have been put in touch with a lovely woman who is starting this journey of IVF. And, reading about where she is and where she's going, I am reminded that, when faced with adversity we have two options - Be strong or give in.

I will not give in. Even if I ultimately come to the conclusion that this process should end... I have to remind myself that it is not me giving up and giving in. Sometimes nature is just cruel and that's ok... that's not my fault.

It has led me to repost something I posted on one of the fertility forums when someone asked how do we pull ourselves out of the depression, anger and frustration a failed cycle (or repeated failed cycles) places us.

After my chemical, I also started a pretty bad spiral downwards.

DH and I did go to a therapist at the time and after talking to us both for a while she pointed out one very important thing to me. It seems a "no duh" now, but I do realize it's a trap I (still) fall into:


It's not my fault.


It's hard to remember this sometimes and put a lot of blame and pressure on ourselves that somehow we've done something wrong, that it's our fault we have issues getting pregnant, that we're somehow "bad" or "less" because of it.


But... it's NOT OUR FAULT.


She wanted me to remember this. To make this my mantra. She wanted me to get out and do other things I love, to exercise or meditate and get my mind to a better place and my bodies own endorphins doing their job.


This last BFN seems to be hitting me pretty hard on occasion. Probably the hormones still in my system, but I feel fairly bi-polar some days, and DH has been worried.


But I just try to tell myself that 1) I'm allowed to feel bad; I'm allowed to grieve and 2) I have not done anything to make this occur. It's not my fault.


I don't know if that will help; and from experience I know it doesn't make all the bad feelings go away. But it does keep pulling me back from that edge of darkness and makes me continue to explore our options... or even someday accept no options at all. I don't like to think about it... but it doesn't send me into hysterics anymore either.


Just my two coppers worth...

Friday, February 3, 2012

A Little Politics

Yeah, yeah... I know... I don't usually do this.
But this article has prompted me to write about it, as it actually is somewhat relevant to my situation.

I do genuinely understand some upset and push-back from religious run organizations. For the same reason I understand religious run hospitals wishing to refuse to do abortions. But, I think we should likely make something clear... to my knowledge (and I fully admit I do not currently have proof to back up this statement, but will endeavor to research it and get back to you on this), there ARE certain circumstances where the Church (and we're speaking specifically of the Catholic Church) does give dispensation for reasons to be on birth control (I'm not sure if there are similar dispensations for abortion... again... need research). Now, granted, this may be a case of those crazy American bishops/priests/etc. "forgiving" things they aren't supposed to.

When I was diagnosed with endometriosis, after the surgery to remove what the doctor found, the recommendation was that I go on The Pill. I was probably around 16 or 17 at the time. My doctor at the time was very religious (though not affiliated with a religious hospital) and my mother, being a good Catholic was concerned about this from a religious point of view. Was allowing me to be on birth control against the Church's "mandate" against birth control? It was decided that, to save me from continued pain and also to attempt to prevent infertility later on in life, birth control in this situation was acceptable.

Let's take a step back for a moment. Take a look at your medical insurance. Look up the medical policy on "infertility" and also the policy on abortion. Go ahead... I'll wait.

I'm willing to bet that if you do you'll most likely find what I did.

A policy that covers nothing or next to nothing for "infertility" treatments; but that covers "elective abortion."

Now, if you're not remotely religious, this post probably doesn't effect you at all. In fact, you're probably saying "so?"

But, if you're religious or, even if you're not, but you've suffered through fertility issues, you may be exactly as livid as I am about this little piece of information (and, btw... if your insurance policy covers both and more, good for you and you better darn well find a way to keep hold of that policy).

Birth control pills CAN and ARE used for things other than to prevent unwanted pregnancies. In fact, in some cases, they can help to ensure the ability to procreate later. Abortions, regardless of your religious belief, are sometimes necessary in life-saving situations and in situations which could help assure the ability to procreate later in life. Fertility treatments are necessary for some couples who, for one reason or another, are unable to conceive on their own.

Our health care system is broken. When my insurance company is ruling my treatment, rather than my doctor, when my government is telling me what is or is not necessary or "right" for me, the system needs fixed. And, while I do respect the fact that some people feel very strongly about what goes on in my uterus, the simple fact is, that in the end, this will be between me and my God.

If we're going to mandate certain things to prevent procreation (even if that is the "side effect" of a necessary procedure), let's make sure it's equally mandated for folks who WANT to have children. I'm angry that my dream may have to come down to a decision based on "I can no longer afford to continue this process."

I guess this makes me Pro-Life-Choice. Or something.

(Author's note: I *know* some folks probably don't agree with me. That's fine. I don't need to hear your arguments, so please refrain. I've said it before, I'll say it again... the whole situation is extremely emotionally charged for me and if you can't understand this, move along and keep your opinions to yourself. Because I'm tired of fighting; I'm tired of defending. Unless you're standing in my shoes, you can't understand...)

Wednesday, February 1, 2012

A Little Slice of Crazy


There does come a time in this whole process when you have to ask yourself “is it worth it?” 


After a year of trying through IVF, the only “success” I had lasted maybe a week. 


I know some folks out there just don’t really “get” my state of mind after all of this. They may say they “understand”… but unless you’ve been where I am, you can’t possibly understand.  You can’t know how certain fears grip you out of the blue and make you question every little thing as “is that was went wrong?”
You can’t know how torn up I am over the success of others. How even the most well-intentioned “help” and “comfort” hurts more than if I was just left alone. How certain events and places and people I have started to avoid like the plague, either for fear that it will upset me or cause another failure or make me more angry than I already am.


I have deliberately started sequestering myself. Sometimes to avoid people; sometimes to avoid situations; sometimes to avoid the mere possibility of trouble or distress.


And I know that there are folks out there who are probably angry or offended or hurt… but I am not going to apologize. As a friend put it to me recently “if they can’t understand why, screw ‘em. You don’t need them.”
It’s sad but it’s true. Very few people I know can possibly relate to what I face day to day. And it’s not that my life is so much more terrible than others. It’s just that it’s terrible enough for me that what I really need from my friends right now is patience, and, if not understanding, at least acceptance that I am going through a trauma like any other trauma and certain things are going to trigger fears, insecurities, anger, sadness. The last thing I need is judgment. 


I am coming to a few realizations with regards to the whole situation. These are very hard for me. They make me feel “less” in so many ways. I was told recently, in response to that statement, that I was “less” if I were comparing myself to views of a 100 years ago (actually, I think he said 500, but even at 100 it’s technically inaccurate… maybe the concept of women barefoot and pregnant died out sometime in the 60’s and 70’s. So I’ll acquiesce that my views may be around 50 years outdated; but not much more than that, really). 


Realization #1 – It is HIGHLY unlikely that I will be able to conceive a child with my own genetic material. The cynic in me says “maybe that’s a good thing, given your genetics.” However, you can see how even this line of though can lead to feeling “less” or “broken.”


Realization #2 – It is possible that I am not even able to carry a child. Potential implantation and inflammation issues aside, I already know my insides are pretty screwed up from my previous surgeries and the adhesions which exist. Though I am reassured repeatedly that these will not be an issue to pregnancy, I’ve often wondered if there weren’t an incredible hindrance and potential cause of continued infertility issues. A new chiropractor I saw recently inadvertently raised the question in my mind again when he stated that things are likely all attached to other things on my insides because of the adhesions. It doesn’t make it an impossible task… but it does cause a lot more issues to consider.


Realization #3 – Given the above two realizations, I may only have a few options left to me. Most of which are cost prohibitive. We won’t even get into my rant on finances being a roadblock to pregnancy. But there you have it. One of my greatest desires of my life blocked because of a lack of money. 


So, I come into 2012 with some very difficult decisions ahead of me; some of which break my heart each time I think of them; others which hold the potential for more disappointment and heartache. 


I will not lie. I am asking a great deal from the people in my life lately, particularly those I have called “friend.” My mood changes from second to second and I admit it is hard to predict what could set me off. So, if I have refused you or your invitations, if I seem short in my responses (or don’t respond at all), if I seem ungrateful for your “advice”, please take into consideration that I am going through an awful lot right now. That in any given month, I’m pumped full of drugs which increase my hormone levels beyond what my body is used to, cause me horrid side effects and pain and bruising… and all too often end in disappointing news and one more step further from my dreams.


I don’t need anyone to really “understand” what I am going through. I don’t EVER want someone to have to go through this. What I do need is understanding that I am in a very delicate place right now. Certain events over the last year have made me a much more fearful person; have made me question “is THAT what cause the cycle to fail?” or “have I done something wrong?” If you can’t understand that, if you’d rather be offended by my refusals or annoyed by my anxiety and issues, well I’m not sure I need people like that around me right now anyway. Best of luck and blessings to you, but don’t let the door hit you on the ass on the way out. I will say I recognize this is 100% me and how I feel; not that someone has been deliberately mean to me. 

I am trying to minimize the amount of blame I lay at my own feet. I am trying to get my anxieties about certain things under control. But I am not going a good job of it right now and I don’t need people in my life who will add to that. I am incredibly imperfect and I need to relearn to accept that in myself. 


If anyone does have something specific they want to ask me about or need to tell me, please feel free to email me.