Another test this morning confirmed no pregnancy. Which shouldn't have been a punch in the face because I knew it would be negative. I got a negative two days ago. But it still felt like a punch in the face.
Then I got a call today at work from the NIH Study in Baltimore. This study - all about Premature Ovarian Insufficiency (as they politically correctly call it... failure is such a downer), would have me stay for three nights at a hospital in Baltimore, where I would get a bone density scan, karyotyping, alllll kinds of blood work, etc. FOR FREE to try to figure out a) why I have this condition and b) the factors that impact the chances of women with the condition getting pregnant.
I would just have to pay for the flight to Baltimore. I have been so excited about this study ever since I heard about it in the Spring. It would be a way to get some answers. And a plan. And I already pre-qualified and was just waiting until September because they were undergoing some "protocol changes."
I learned on the phone today that "protocol changes" means they've done away with the whole effing study. It's turned into a series of phone consults in which they tell me about the condition and how to live with it and manage it in a healthy way. No tests. No Baltimore. No doctors. No answers.
It was just the second punch in the face I needed today to totally lose my shit. At work. In the middle of the day. I managed to grab my gym bag and mumble "going for a workout" to my student worker before high-tailing it out of the office to have a good cry.
The cry helped. The workout helped too. You guys helped. Having a trip to Mexico on the horizon (um, next Saturday! How did that happen?!?) also helped. Having a couple of beers tonight will probably help. I'll be okay.
I also need to update a smidge late on Stupid Stork's Manly Monday. Here's some more info on my beloved Champ.
- When he gets drunk, he grows equally large amounts of disorientation and confidence. This leads to some rather hilarious situations, such as him providing wildly incorrect driving directions (that you have no choice but to follow because he sounds so daggone confident!) and explaining complex directions that make no sense. There was one time that he had each member of my family simultaneously calling the cell phone of a different family member (all at the same time, in the same room). No rhyme or reason to that. He cannot recall the purpose of this experiment.
Champ is pretty tall (6'1") and pretty skinny (155 lbs) and he has the longest, weirdest toes ever. He has long limbs all around, but his second toe is as long or longer than my pinky finger. Look at your pinky finger now. My husband's toe is probably longer than it. I submit the following picture into evidence. Please note the toes in the background.:
That's all I have for today. Thanks again for the support!!
1.) NIH is BOMBASS. You'd be in the right hands.
ReplyDelete2.) Your husband's toes look like ET fingers.
He would be mortified if he knew I showed this picture. I had his toe "tagged" on Facebook and he immediately untagged it! Hehehe!
DeleteYou just got me SO EXCITED about you coming to Baltimore. I live in Baltimore! But then I got SO BUMMED when I read that the study was cancelled. Sorry lady :(
ReplyDeleteOMG, I would have LOVED to see you in Baltimore! I'm so bummed about this too. I've had my hopes up about it for months!
DeleteSuck. Sorry to hear about the study! That would have been incredible, and it is definitely an area that needs to be studied. Sorry lady.
ReplyDelete:( Yes. Not only would I be hopefully getting some answers, I could help the study of the condition. DENGIT.
DeleteI'm sorry about all the punches in the faces you've received recently. POF is something I've worried about a lot (because, you know, why not worry about everything possible) but the doctor assured me I don't have it. Just fun PCOS. Woop.
ReplyDeleteAlso-those are freakishly long toes. They will haunt my dreams.
POF sucks a fat one, but I'm sure PCOS does too.
DeleteThose toes... they haunt my life... he can use them to pinch me and it's at LEAST as hard a pinch as anyone with fingers.
Hey Jen I am just catching up on your news, I am sooo sorry for the bfn and the NIH being ejits. That totally sucks. Enjoy the beers, sending you cyber hugs xx
ReplyDeleteGlad you're back in one piece, Arwen Rose! We've missed you. Cyber hugs back!
Deleteso rough. and the emotional roller-coaster too, double shittiness. I never know how to think about the IUIs, it feels so unlikely yet you let yourself believe that somehow... maybe... but thinking of you guys for the next steps, whatever they may be. And yes, those are some crazy toes.
ReplyDeleteI think no matter how much you prepare to not be upset, you're still thinking about it constantly during the TWW...no drinking, no crazy exercise... it's impossible not to have that glimmer of hope!
DeleteI'm so sorry that they cancelled that study. I can imagine how devastating that news would have been. :(
ReplyDeleteAt first I just thought that second picture was of a cat, but then I saw the toes. Haha...you were not kidding!
That NIH study better have some DAMN GOOD PHONE CONSULTS! :-/
DeleteSounds like a trip to Mexico is exactly what the doctor ordered. Sorry about the BFN. It sucks
ReplyDeleteIt's what keeps me moving these last two weeks!
DeleteWhen it rains, it pours, doesn't it? I'm so sorry for the second punch in the face. I hope your trip to Mexico offers a sense of renewal. ~ hugs ~
ReplyDeleteAll I want is a drink in my hand, the sun on my face, and water nipping at my toes. Can't. Wait.
DeleteHi there. I have really enjoyed your blog. I received the same POF/POI diagnosis 5 years ago. And I participated in the NIH study with Dr Nelson. It helped somewhat but in the end they figured out that the cause of my condition is 'UNKNOWN'! I cannot say that life has gotten any easier for me. I have taken up a lot of hobbies that I enjoy and writing my blog certainly helps.
ReplyDeleteWhat has helped me the most is always making sure that I had something that I was looking forward to. Have a great trip to Mexico!
Sorry you didn't get any answers with the NIH study. I'm sure I could have gotten the same result and would have been seriously bummed to still not know.
DeleteI'm so sorry your study in Baltimore was changed so drastically. It sounded very exciting. I would love to do something like that so I don't blame you for being disappointed that it was pretty much canceled.
ReplyDeleteOn the bright side - how fun to be going to Mexico next weekend! I so wish I was getting ready for a sunny getaway. I hope it's just what you need.
Mexico will make all bad news go away. At least for a week. Can't wait!
DeleteHey Jen! I'm late on the news but was thinking about you and checked to see if you had results. I am so sorry for the BFN. I too was excited about your trip to Baltimore... It's only an hour away! Cue bummer music... Wah wah :( sucks.
ReplyDeleteI'm hoping you enjoy your trip to Mexico. Well I know you will enjoy it, it's Mexico!! Sending some extra love your way.