Primary Ovarian Failure

Hello!


I can't believe that the last time I wrote in here, it was April. 


Tonight I'm a little bit restless and so, I figured it was the perfect time to write! 
(Dustin is sound asleep beside me, and usually he's the insomniac!)


I've been thinking about this blog and what I want for it - I think I'm going to write more about our upcoming wedding (which has been postponed, but that doesn't stop me from planning!) and our new home. I really want to take the time to decorate it the way I've always imagined. Dustin and I spend so much time at home, when we're sick, and I'd like to be our own little oasis. A place we feel 100% relaxed in!


Which brings me to my updates -


Back in April I wrote about how we were just about to visit our new town. Well, I got sick and that never happened. We ended up going back home to NJ for awhile instead. Dustin managed to get me an appointment at NIH (National Institute of Health) in Maryland and so, a couple weeks after we flew to NJ, we drove there and I stayed a couple of nights in the hospital. I was so sick and weak, I barely made it through the car ride. In fact we had to stop at a rest stop and it took all I had to keep from falling over in the bathroom stall and as we made our way to the car, I thought several times "Oh god, they're going to have to call the paramedics" - my heart was so fast, my blood pressure dropping. I was so, so weak.


Anyway, that experience was nothing short of a nightmare. At first I was woo'ed by the big, top-notch security building with its sparkling clean white hall ways. I liked the fact that I got my own little name tag and the nurses were familiar with my conditions. 


It seems, at these appointments, that I'm always lured in by this dream I've had since I was 19 - that suddenly some doctor somewhere is just going to say "I get it! I got it! Here's what we can do to fix you!" It never happens and you'd think by now I'd accept that, but I don't. I just keep dreaming!


They took 16 tubes of blood one morning and my blood pressure dropped to 70/30. I thought I was going to die. The rest of my stay there it was incredibly low. They gave me some fluids and I saw a physician who specializes in Primary Ovarian Failure - a condition I was diagnosed with at 16; the most irritating, anger-provoking of all my health problems (namely because of the jackass endocrinologists I've had to deal with). As per usual, he was another jerk who wanted to blame my symptoms on being female and "sad" and possibly anxious, and maybe I was just imagining waking up at 3 am with my heart rate at 175, or my inability to tolerate any type of heat without fainting, or my random fever of 104, my bouts of weakness that send me to my knees. You know - just "sadness". 


The funny (for lack of a better word) thing about the diagnosis of Primary Ovarian Failure is this: Regardless of your attitude, your feelings about the future, your goals, yadda-yadda-yadda - as soon as you receive this diagnosis you are pegged as a sad, grieving, infertile woman. If you're like me and have other health issues along with this god forsaken diagnosis, good luck. You'll be told over and over and over again that you need to just come to terms with your diagnosis and move on with life. There's always "in vitro" - you know, because you so want somebody else's eggs inside of you, because you are so-so-so hurried/rushed/crying/aching ready to have babies. 


News Flash: I have never cared.


I wish I could wear a T-shirt to every doctor I saw in the last ten years that said that, because it really is the truth.


The thing that has been bothering me all these years has nothing to do with infertility and everything to do with the fact that I'm young, I should be healthy and active, and I am not. My symptoms are real, debilitating, and scary and nobody has much of an explanation as to why. My ovaries suddenly failing before they could even start and sending me into, essentially a post-menopausal state (leaving me with osteoporosis and the added bonus of high cholesterol/increased risk of heart disease) was always on the second shelf for me, because I was too busy fainting and being unable to stand. That type of thing will usually take first priority.... I mean, infertility is a crappy diagnosis, but when you're unable to stand or sometimes even sit, you're not thinking about much else. Trust me.


I was an unusual child. I loved Montel Williams so much that I bought his book one year. Why Montel Williams? Because I was always at home, sick, unable to go to school and Montel, he was like the best teacher in the world. Sure, I can't even tell you where Asia is on a map and I mix up my countries with continents and I only just learned to tell time a few years ago ... but Montel taught me about life! I would sit there with the lunch my mom had packed me the night before, smiling at the TV, thinking "This guy is a genius!"


He had a few episodes about adoption and suddenly I was like eight years old crying in front of the TV, begging my mom to let me adopt a child. Somewhere along the line I forgot I was a child! 


It's probably one of the strangest things about my life.


When other children were playing house, I was playing "orphanage", dressing my baby dolls in ragged clothing (which I sometimes cut up myself!), putting on my nicest dress, and walking into my bedroom. I'd stand there happily, look to the side at my imaginary husband, and say "Which baby should we adopt?" and then walk out holding my new son or daughter, smiling proudly.


I did this a few times a week; different dolls, same smile.


It's as though God was preparing me - or no, it was simply "to be" from the time I was a baby myself. Fate, destiny, all of the stars aligning, so that I could be 1 in a 100, 000 women who's ovaries suddenly say "See ya!"


It was the very first thing I said to my pediatric endocrinologist, who diagnosed me at sixteen. He looked at my labs, looked at me, and essentially told me I'd never have my own children.
I shrugged my shoulders, thinking about my boyfriend at the time, and my high school singing performance next week, and a bazillion other things that seemed so much more important. He looked at me firmly, no emotion, just waiting for me to turn from a happy, normal teenager to an infertile woman.


"I've always wanted to adopt," I said, smiling.


He frowned.


For years I didn't get it. The reaction. The lack of expression. The way they all seemed to snicker when I mentioned adoption, and in turn, they'd mention in vitro and how it was a great option for me.


I was sixteen. It was like mentioning a nursing home to a 40 year old. I didn't get it or care.


The endocrinologist at NIH- he wanted me to agree that I was upset about something that I've always seen as a blessing, not a curse. 


Sure, it has probably lead to my complex medical issues, and sure, it would've been nice to have my hormones all nice and balanced, but I was the right woman for it to happen to. Not because my own biological children wouldn't be wonderful, but because I have the heart to adopt a child who already exists and is familyless. It's kind of amazing when you already know something in your heart (even from childhood!) and then life basically says:


"Guess what.. that feeling you've got? That passion, that empathy, that little idea you've carried around since you were little yourself?


Bingo. Go with it."


Some women are devastated at the diagnosis of infertility. I've seen infertile women on support group forums who's daily lives consist of FSH readings and the search for one, single story of hope from some other woman out there. They're broken, they're desperate, they feel empty inside. They focus on the one thing they don't have, even though I'm sure many of them have wonderful husbands and families and homes. They just can't see past it. They do the "why me?" thing over and over. They become infatuated with the idea of pregnancy. The very thought of being "barren" disgusts them. The word "adoption" scares them, belittles them. Many of these women are perfectly healthy otherwise. They live seemingly normal lives. They just feel a deep, aching grief.


I feel for them, but I'm lucky enough that I just don't understand it. 
Years ago, I thought maybe I'd get that way as I got older.


Nope. Still waiting.... 


God - it's so weird. I never know how to act at these appointments. How do you convey to a doctor that you're not one of those women, you're just sick? It's hard enough to get a doctor to believe you're actually sick these days, period. Nonetheless, get them to believe it, when you have this looming stereotype over your head.


Poor Dustin. He was hurting for me after NIH. He really thought it would be my answer. He thought they'd help me get better. He saw me so sick day in and day out and he went out of his way to get me that appointment. I told him the same thing would happen, and he just couldn't understand. "They're the top specialists," he kept telling me.


I nodded my head. I'd already been to three "top specialists", some of the coldest, rudest people on the planet. (Planet. Yes. Seriously. There are alien specialists somewhere out there who are nicer! I know it!)


He was shocked. He sat there with me as this idiot blew me off, shrugged his shoulders about my syncope episodes and all of the other crap that comes along with it. He told me to take estrogen, see a therapist, and move on, basically. He stared at us with "I know your kind." eyes and proceeded to ask us personal questions about our life.


I was at such an exciting place in my life (still am!) and told him so. Engaged to an amazing man, about to move away on our own, planning our wedding ... but sick. Before I could even say "I just want to feel better", he was out the door and we suddenly realized all the time and money we invested into our trip there was wasted.


Disappointing, but expected, nonetheless. In a deep down, "I was praying someone would prove me otherwise", kind of way.




I didn't know I'd end up writing about this tonight. I just had planned to briefly describe my NIH visit and then move onto all of the fun, exciting things I've been up to here in North Carolina, but I guess this has been weighing on my heart all along. It's something I've never shared with anybody before. Except for my mom and Dustin. It's so long and confusing, so backwards and twisted, I guess I never had the energy to explain it all. But that's it. In a nutshell... 


Ridiculous, isn't it? 

Goodbye Jax!

In just four days we'll be leaving Jacksonville.


I can't believe it.


As much as we complain about it, I know we're going to miss it. 


This is where we met, where we fell in love. It's also where we met some amazing friends and had the experience of a lifetime. So many memories here. It's hard to say goodbye.


When I moved here, I wasn't sure what life held in store for me. I never could have dreamed of what happened. I was hopeful that I'd come here, make friends, get some good doctors, and feel like my life was moving forward in one way or another. It felt like my life was on pause for so long and I was eager to do something, anything to see some positive changes occur. 


But honestly - I felt like I was being pulled here. There are so many things that could've prevented me from getting here. When I look back, even I realize it was kind of a crazy thing to do. Nobody back home was encouraging me to go. I could tell most of my family thought it was going to result in disaster. I was scared. I was moving to a city I'd never even been to. At the time I was so sick and weak and I remember wondering how I'd even make it through the airport, nonetheless how I was going to manage a move.


Ironically enough I'm laying here wondering the same thing about this next chapter in my life!


The big difference now is that I'm not leaving everything behind in Jacksonville-


My soul mate, my future husband, is coming along with me! 


Aahh, I am forever grateful for this city and for all of the people and circumstances that lead me here.  Words cannot describe. In fact, I have never been able to find the appropriate words to describe our love story or my feelings for him. From the very beginning, I could not accurately describe the draw I felt towards him - the way I looked out the window, saw him, and instantly felt like I wanted to be closer to him.


The excitement and butterflies that I felt when he first said to me, "There's not a thing I don't like about you." That second in time when I knew he was going to tell me how he felt and I could not wait to let him know I felt it too. 


We were sitting on a curb in this very apartment complex; both of our hearts racing (feeling weaker by the minute because of POTS!). I remember the look on his face during that moment in time when we both knew it could be the beginning of something really special, the way we walked around hand in hand.  I was weak and dizzy, but could not have been happier.


It was like the moon and the stars were lit up just for us....


And now, we're off to the next chapter of our adventure! North Carolina, here we come!