Wednesday, February 25, 2015

Passing the Time...

Greetings all!'s been a couple weeks right since I posted. I've been occupied with what they call "Life" in the past weeks or so. Nothing out of the ordinary but still occupied. I'm up tonight blogging to kill a whole hour before I need to get up to administer meds. I have an alarm that I do respond well too, however it's just easier on me [my body] to stay up until then. So I thought I"d post a quick entry as I attempt to keep these eyes peeled & the mind energized til 3am...Fingers crossed xxXxx :)

Lately life & it's many ups & downs have been catching up with me. I'm always on the go & hardly sleeping much. I'm sore a lot lately....A whole lot. More than usual. I know it'll pass but if it doesn't then oh well. I'm giving myself that pep talk, not for myself but more-so for those around me. I figured if I show some optimism in my health they'll back off with the worrying. Truth is, this is my life. It's always filled with pain, always has. Nothing probably won't change that. It's not that I'm looking forward to it or welcoming it into my life, in fact it's the very opposite. I just know the truth of my reality & that reality is living with OI can come with a lifetime of pain....You get accustomed to it. Some days you're able to manage without it showing on the outside & other days you can't hide it. And lately I haven't been able to hide it the way I'd like. The face never lies..It always tells on ya...Expressions that is. Just when you thought the phrase "hey you don't look so good" was a t hing of the past, someone bites ya in the butt & says..."hey you don't look so good"...LOL...I'll be fine though really. The cold weather contributes to bones that aren't in the best health by default so all I can do is bundle up, rest & pray for some relief. My age, having a baby & living with OI all play a major factor in my pain. It's come to a point where I've seriously gotta lay off the cheese burgers & Pepsi & start eating foods that will contribute to my energy level & exercise so that I can keep up with my growing Honey-Dew Melon: Haley Jean!!

Well I guess I'll get a head-start by peeling myself off this couch & get started. I know I've got 20 mins but hey....I'm starting to ramble & if I don't go now they'll be hell to pay...LOL..Overall we're doing well & HJ has been home nearly a month doing so fantastic that I can't contain myself. I'll try to check in again sooner than later. Oh, click the youtube link below for a little treat. Gonna go now so  I can catch some Zzzzz's

....Til next time. :)

Sunday, February 15, 2015

"We Can't Get Too Close"...

So...The most amazing thing happened on the way to the forum :)

NBC's "Grey's Anatomy" episode was centered around a couple who's unborn baby was suspected to have a diagnosis of OI Type II, one of the most fatal mutations that anyone can have. Statistically, most babies born with TII don't live more than a few hours after birth, sometimes a bit longer. This mutation consists of severely underdeveloped lungs, low birth weight, airway & respiratory problem almost no collagen & other health issues that can be irreparable. The couple decided it was in the best interest of the child to terminate the pregnancy. Many people of the OI Community weren't thrilled about the manor the news was delivered. Nor were they happy about the ending. For the past few episodes they ran this subject & I tweeted the show with Haley Jean's picture. I wanted to show that there is life beyond the diagnosis & in some cases OI isn't a death sentence....I got a RT from the show!! It was so exciting...I could barely contain myself. So many people RT, favorited & followed me back. I liked the idea of spreading awareness.

"We can't get too close" was a line from the show that will probably stick with me always. My parents faced this very potential option, told by medical officials to abstain from getting attached. Not much info was available in the 80's so it was a waiting game. This episode hit home for many people living with OI or somehow associated with it. That conversation, the tone, anxiety....The harsh truth of what is to come or what's to be is so heart-wrenching. Because I have Type III, the likelihood of the child having the same mutation was 50/50. While there were complications to be expected, none were like Type II. Many ask me how did I do it, how do I manage..My answer is always the same....I allowed Him to direct my footsteps, included Him in all of my decisions &  It was by God's grace that He carried us through the midst of the storm...

My goal is to tell others faced with this devastating decision that with God there IS life beyond the diagnosis...:)