Good Things

• Purple-orange sunsets.
• Cuddling on the couch after a long day at work.
• Having a nice, cool watermelon on a hot day.
• Reading a good book by the fire.
• Sleeping in on a rainy day.
• Walking with someone you love on the beach, in the fall, when no one else is around.
• Having dinner with friends and talking, laughing, eating, drinking late into the night.
• Opening up a birthday present (or any present) and being truly surprised and delighted.
• Knowing Christmas is just around the corner.

Yeah, like that.

Emily over at Scrambled Eggs wrote about the ache and pain of hovering outside the circle. It's heartbreakingly beautifully.

Infertility with a side of Sjogren's

Last few days, my left eye was feeling a little swollen and itchy. I had been dealing with underlying eye infections for almost a year and they have been mostly annoying more than anything else, so I just continued my usual eye hygiene (yes I practice good eye hygiene!) and didn't think about it much. This morning when I woke up, both my eyes were painful. It hurt, everytime I blinked. So, I pulled out my handy Merck Manual and it looked like I had an infection of my tear glands/ducts causing "abnormal tear production" which leads to dry eyes which can lead to infections. Ok, nothing new there. Then, one sentence caught my eye. "Abnormal tear production may be due to a problem with the tear glands and ducts or due to a systemic disease that affects the tear glands, such as Sjogren's syndrome" (pronounced "show-grins" but you know what? I ain't smiling). I remembered coming across this Swedish sounding name in my reading about autoimmune diseases and POF. Looked on my computer to see if I could find the information again and sure enough some people with POF also have Sjogren's.

After reading some more about the symptoms, I suspect that I may have it. But, you know what the best part of this syndrome is? Sjogren's, like POF, is one of those things Dr's don't tend to catch or gets misdiagnosed. The average diagnosis time, according to the Sjogren's Syndrome Foundation, is 6 years. Which means that I may have to deal with a whole second set of Dr's for the Sjogren's on top of the Dr's I'm hoping to find to treat my POF and have a baby. A whole other slew of Dr's I may have to fight to get the appropriate testing done, a whole area to research so that I can properly take care of my condition in case the trained professionals aren't on top of things, not to mention any insurance battles I may have to contend with.

This is going to be a spankin' fun weekend.

Drawing circles

I know there are many, many women who are dealing with DOR or POF. But I feel like I'm standing outside the circle. I don't technically have POF because my FSH is high, but not so high that I’m menopausal. My high FSH means I have DOR, but most of the research, support groups, etc. involve women over 40, because the majority of women with DOR are in that age group. In fact, the RE hadn’t thought it was worthwhile to test my FSH because I am not yet 35.

I understand that regardless of my age, I am not really all that different than these women, but I feel I am different. I feel like I’m not exactly part of the group. I know that has a lot to do with who I am and how I view things. I have always felt like the different one. The girl who never had the right clothes or the right look. The new kid in town who doesn't know all the rules of the game. The one who missed the first day of school and everyone else already has their safety buddy. The one who doesn't belong.

I have struggled with feeling this way for most of my life. I have come to a place where, 85% of the time, I realize it is just my perception of the situation and not rooted in reality. I know my tendency is to view the glass as half empty instead of half full. Most of the time, I can usually keep those I-don't-belong thoughts at bay and not let them overtake me. But, in trying times, I am weaker. I let those feelings come creeping up and they hungrily feed on my weakness. They feed, I weaken, then they get stronger and feed on me some more. In those times, when I read about infertile women achieving their families, I feel disheartened instead of hope. I don’t belong therefore what happened to them can't possibly happen to me. And, before I know it, I’m stopped in my tracks, stripped of my warrior fierceness.

I know that eventually I shake these feelings off. Things become clearer, more hopeful and I’m ready to fight for my chance at having children, again. I’m just at a loss at what I'm supposed to do when I’m in the midst of it. How do I keep myself from standing outside the circle? How do I keep myself from drawing that damn circle in the first place?

Snuffleupagus

I have been thinking about this blog and the support I have been getting. In part, I started this blog as an alternative to therapy. I was in therapy in my early 20s and it was life changing. Partly because I was ready to deal with the things that were not good in my life and partly because I lucked out with my therapist. She was a great therapist for me and helped me figure out how to listen and be true to my own voice. I tried therapy again after my miscarriage because I suspected I might fall back into depression. But, I just didn't click with this therapist (different one). I tried writing in a journal, but felt like I needed to have some coherency and focus to what I was writing instead of just stream of consciousness writing. A big reason for this blog is to get me to listen to my own voice again. I also thought it might be a way to find support from women who might relate to what I was going through. I knew that starting my blog didn't mean anyone would be reading it right away, that it would take time. I was also open to the fact that no one would ever read it and writing would just be therapy time for me without the expense of actually paying anyone to hear me ramble. I was happily surprised, then, to start getting comments after posting for only a short while. It also made me realize how alone I felt in this whole thing, because it felt so good to know someone was out there. So, to those who have commented on my blog, thank you not only for your comments so early in the game but for letting me know you're out there. It comforts me like the taste and feel of warm soup on a rainy day. And if you’re a lurker, please keep lurking...or else I'll have to own up to having more imaginary friends.

Normal by omission

A few days ago, a co-worker I hadn’t talked to in awhile asked me how I was doing. I said I was doing ok and then we proceeded to talk about various shows on TV. Granted, he and I usually talk about TV shows. That’s the nature of our relationship. But, it got me thinking about how my life appears quite normal and mundane to most people I interact with even though the pain of miscarriage and infertility has been something I have been dealing with for over a year. I also thought about how I see other people’s lives. That, with the exception of a few people, I think most people I am around have pretty good lives with some struggles here and there, but overall happy and free of worry. But, if I come off normal and relatively worry free when a lot of the time I am completely the opposite, how true is it for other people?

The truth is that I don’t talk about my problems to most people and in not talking about them, I come off as someone whose life is without hardship. Now, we all know everyone has their problems and struggles, but for the most part, for most people we know, we never know the exact nature and depth of the problems they face. And that makes me sad because maybe if I had known, I could have helped. Maybe, if I knew the woman on the second floor has suffered something similar to what I suffered, we could be supportive of each other. Maybe, if I knew that the 8 month pregnant woman down the hall, working with 2 other pregnant women, has struggled with diminished ovarian reserve and it took her 4 IUI’s and 2 IVF’s for her to get to the place she is now and she is still scared shitless that she will not be going home with a live baby, I can have some comfort in knowing that what I am going through, the longing, the disappointments, the constant hoping against hope then receiving bad news, is not such an uncommon struggle after all.

The head is willing, but the heart still hopes

It's been a week since getting back my FSH results. In that time, I have read everything I could to understand what is known about high FSH and what it means for having a baby with my own eggs. In short, it's a low probability of pregnancy and if we were lucky enough to get pregnant again, even lower probability of live birth. This is true whether we try on our own, try with clomid+IUI or IVF.

As I look back on my cycles in the last few years, I realize they probably started gettting shorter about 4 years ago. I also realize that what all the Dr's and nurses were telling me about my anembryonic pregnancy (aka blighted ovum) being a fluke was probably wrong given what I know now. It wasn't my miscarriage that was the fluke, it was that I was able to get pregnant at all. Once pregnant, studies show that the chances of having a live birth are only about 20%. On top of that, because of egg quality issues, if I was able to have a baby with my own eggs, there is likely a stronger possibility of having a baby with Down's or something worse compared with other women my age.

Knowing all these facts, my head knows the right choice, if I want to experience a pregnancy, is to do it with donor eggs. DE means I have a great chance of pregnancy and a great chance of a healthy baby. Because, even though my eggs are equivalent to that of a 40 or 50 year old woman, the rest of me is still a good, young, acceptable 33. And I know I will love any child I have whether it be through DE/IVF, adoption or kidnapping*. And I am so ready to have a baby. NOW.

But it is so hard to give up the idea of having a biological child. I may not have many good ovaries left, but the fact that I am still getting periods (every 24 days! Beat that!) is actually a good sign given I have high FSH. But no one, not even the best Dr’s know or can figure out how many good eggs I might have left. Let alone how to catch any of them, if and when they decide to pop out. Yet, I can’t help but hope. I can’t help but think maybe I can get lucky just this one time. And I can’t help wondering if I give up on trying on our own now, whether I am giving up on having a child from my own genes in a rush to have any children at all.

It doesn’t help either, that on a month when I know my FSH is so high I get egg white cervical mucus on cd11 and cd12 when typically I get it cd7 and cd8. Ever get the feeling God is just fucking around with you because he has nothing better to do?

*Not really considering kidnapping as a viable option…just a cheaper one than the other two.

Mo Cuisle (part II)

The positive HPT was on Easter Sunday and the next day I went into the clinic to get the referral process started to see an OB. I was told I had to do another pregnancy test then went in the next day to get the results which confirmed the pregnancy. I talked to them about the barely there period and about the fact that I was probably about 10 weeks along. I was able to get a Dr’s appointment for two days later. I was told they would want to see me right away because of my indeterminate LMP and do an u/s to confirm how far along it would be. I was told I shouldn’t worry though, because I wasn’t having cramps. By this time, I had let the pregnancy sink in and was reveling in it. I started smiling and saying hi to everyone in the hallway at work. I thought about how I had never felt like I had gotten any breaks in life and now, this wonderful, unexpected gift drops in my lap. I blissfully reveled in the knowledge that I was going to have a baby.

The morning before my appointment, I checked my toilet paper after going to the bathroom as I always had a habit of doing (again, thanks mom). I saw that it was pink and my heart started pounding. I was at work and so I called Mr. Worrier and he came to take me home. I called the nurse I talked to earlier in the week who put me through to an OB on call. She asked if I had cramping and when I said no, she told me it was probably ok but if I started cramping, to go to the ER. My mantra for the rest of the day was no cramps, no cramps, no cramps. I couldn’t eat and I was desperately holding onto the hope that everything was going to turn out ok. I told myself to just trust and have faith. Just Please don’t let me have any cramps.

I got my wish, I had no cramps. And, as far as I could tell, no more pink on the toilet paper. Mr. Worrier came with me to the Dr’s appointment. He held my hand through the abdominal u/s…through the transvaginal u/s…through the tears. The u/s showed only a sac, no fetus, no baby. I was devastated, numb and confused. The nurse tried to give me hope, telling me maybe I was wrong about my dates and that it was too early to see the fetus. I knew that wasn’t the case and the blood draws over the next few days confirmed it.

I had the actual miscarriage about three weeks later. It was the most painful cramps I had ever had and I soaked pad after pad with blood. All I could think about was that the cramps must be a little bit what childbirth felt like. Besides the bleeding there were also large blood clots. I remember when I first saw them in the toilet, they reminded me of chicken livers. I couldn’t help myself and reached in to save them. I didn’t know what I planned to do with them. I just couldn’t bear the thought of them being flushed down the toilet.

Though it took almost a month for the miscarriage to occur, I was grateful for that time. The pregnancy had barely begun for me when I went in for the u/s and those weeks gave me time to accept it, even though the pregnancy was doomed. Knowing I was not going to have a baby was painful, but being able to feel my longing for it reaffirmed my pregnancy and assured me it was real and I needed to know that at least my pregnancy was real. I wasn’t ready yet to lose the pregnancy, too.

Afterwards, as I tried to cope with the miscarriage, I came across the advice, many times, to name my “angel” so I could grieve and move on. I tried, but I could never find a name that felt right and thinking of my lost baby as an angel just didn’t fit my belief system. Logically, I knew no baby ever developed from that pregnancy. That what caused my symptoms and the positive HPT was only from the sac that developed. Emotionally, though, it was something more, something deeper which, at the time, I didn’t have a name for. Now, as I face the knowledge that I will never have a biological child, I realize that the loss of that pregnancy was not only a loss of long wished for dreams and hopes, but a loss of mo cuisle.

Mo Cuisle (Part I)

In April 2004, right before Easter, I realized I was late. And I was worried. Not because I thought I was pregnant but because I thought something seriously wrong with my reproductive parts. My last period was barely a period. I spotted for a day or two, had some light bleeding for barely a day, then spotted some more. I knew I was not going to get my period anytime soon. I just did not have the usual premenstrual symptoms—backache, crankiness, etc. And, if I thought about it, my cycles had just felt off for a long time. They just did not seem the same since I changed my work environment in 2000. At first, I attributed this offness to stress of a new work place and to a new, more demanding work environment. While I had kept track of my period, religiously, since almost my first cycle ever (thanks to my mom who would always mark our day 1 on a calendar in the bathroom by circling the date and marking “M” for mom and “S” for me) I completely lost track of it that year. I eventually started keeping track again on and off for the next few years, then an even closer tab about 7 or 8 months before that April in 2004 because that is when Mr. Warrior and I decided to stop using any kind of birth control. We weren’t deciding to have a baby, exactly. Just that if it happened, then it would happen. I also started keeping some mental notes on when we were having sex. It wasn’t difficult, really, because it wasn’t happening that often. Mr. Worrier had been walking the depression fence for the preceding few years and it affected our sex life. Then, for some reason in February 2004, I started marking sex on my cycle calendar also. There was just one mark that month, on day 8 of my cycle. I remember thinking at the time, if only we had done it a week later, it would have been a perfect hit for ovulation day. I wasn’t charting at the time, but my cycles had always, ALWAYS been 28 days and all the books say that with a 28 day cycle, you ovulate on day 14, right? The books can’t possibly be wrong, right? I mean, each and every single one of them say that a 28 day cycle means you ovulate on day 14. So, it was no surprise when I had bleeding three weeks later even though it was a barely there period. There was some strange, but very light pink on the toilet paper thing about a couple weeks before the barely there period, but I didn't want to think about it. It made me worry that something was drastically wrong with me but I just pushed it into the back of my mind. I actually was able to do that until I realized the Saturday before Easter that I hadn’t gotten my period yet and I was overdue.

I got on the computer and consulted Dr. Google. Dr. Google introduced me to Dr. emedicine who told me all about ovarian failure, ovarian insufficiency, PCOS and a multitude of other conditions whose symptoms included not getting your period. And, in all these descriptions, the first thing to do was to rule out pregnancy before further testing. Since it was a weekend and there was no possibility of seeing a flesh and blood Dr right away, my thinking was that if I took an HPT to rule out pregnancy, when I did get in to see the Dr in a few days, we could go straight into the serious testing to identify the REAL problem I had. I told this to Mr. Warrior and he just kept asking me, are you sure you aren’t really pregnant? Maybe you’re really pregnant? You have been kind of moody lately and tired a lot. And, didn’t you say your boobs were aching almost all the time? I showed him my clearly marked calendar and gently reminded him that we really only had sex one time this year and that was in the previous cycle. No sex this cycle, no way I could be pregnant. I mean being pregnant when you haven’t had sex was kind of like saying if you threw a rock off a tall building it will shoot up into the sky and hit the moon. Kind of unlikely to happen, you know? So, yes, I will take an HPT, but just because that is what you do first when you want to diagnose these kinds of problems. Being the type of people we are, we read up on what the most effective HPT on the market was (First Response Early) and walked across the street to the drugstore. Came home, then learned to pee on a stick. Immediately one line showed up dark as night, as we watched the liquid flow up the stick. I thought it was awfully strange that the reference line was backwards on this stick. I mean it was completely opposite what the little picture on the directions showed! What horrid quality control!! And, this is supposed to be the good test?!? When I pointed this out to Mr. Warrior, he gently pointed out, that it was the pregnancy line not the reference line. I wouldn’t believe him...until minutes later when the second line appeared, lighter than the first. It didn’t matter now which was the reference line and which was the pregnancy line. It was a definite positive.

I still couldn’t make any sense of it but I cried from the sheer joy and relief of it.

31.1

Summer is neither my favorite time of year nor my real name, but all else within the confines of this blog will be as true a reflection of my experiences through infertility as I can get. Wearing this badge of infertility is a relatively new thing. Though I have had a miscarriage and have gone through the “prescribed” year long TTC with no pregnancy and lurked in the shadows of the Infertile Elite for over a year (Julie, Tertia, Grrl, Julia, Cecily to name just a few), I didn’t quite feel like I was in their class because what they wrote, they wrote so well and on top of that my experiences certainly don’t compare to the hardships they endured (but I certainly don't seem to have any problem addressing them as if I knew them, do I?).

So, why this label and this blog now? Last week, my day 3 FSH levels came back. The Dr left a message asking me to page him and call him back. I knew it couldn’t be a good sign because if everything was normal, they don’t call you, you call them. I braced myself for the worse, for what I had suspected for at least the past year and for what I feared for the past 4 or 5 years. I just turned 33 years old, but it was true. My biological clock was dying a slow death and along with it my hopes of having a biological child of my own. Surprisingly, my reaction was not the usual meltdown and despair followed by the gazillion worries about what else could be wrong with me or will be wrong with me. I knew having this diminished ovarian reserve at so young an age meant my periods will stop sooner than is typical and I will go into premature ovarian failure. Not good news. So why was I handling this relatively well? Sure, I cried for two hours, but I was actually able to get back to work and put this in the back of my mind and not be anti-social to the people around me and finish the day weepy but with a semblance of sanity. A far cry from the months of depression that followed my miscarriage last year. In the next couple of days I thought about how I had wanted to start a blog but it never came together in a way that felt right. I could never find the right name for it that encompassed who I was. But these last days it came to me and here I am. I realize now that I couldn’t find the right name because I had spent this time after my miscarriage stuck in my worries. I had days when I hated the person I had become but didn’t know how to go back to the person that I was. But, for some reason discovering my high FSH level brought back the fighter in me. Not the aggressive, I-am-going-to-tackle-this-thing-no-matter-what-life-throws-at-me fighter. I was never that kind of person. But, an ok-this-is-who-I-am-so-how-am-I-going-to-deal-with-it fighter.

Will I go back to the withering pile of worries that I was? Probably. For a little while. On some days. Because, that’s who I am also. But, the infertility fight isn’t about having my own babies anymore and conquering infertility. Now, it is about having a family and fighting the good fight.