A lot has changed since this blog originally began.
If you've visited here before, then you probably notice that a bunch of posts are now missing. I removed them. I left a few old posts if they have can be applied to the current direction of this blog.
I also used to use code names for everyone. For the new direction of this blog, let me introduce myself: my name is Leah. My husband is Pete. We have a 5-month-old daughter named Lucy--she's a mutt that we adopted around the 4th of July this year. (in case you haven't figured it out, Lucy is our puppy).
So what is this new direction? Well, it's life. My life. Our life. There are so many incredible things happening right now that i want to chronicle our life.
So what's going on? And what do you, the reader, have to look forward to?
- For starters, we are newly-weds, so we have a condo to decorate and transform from the "wolf den" to a home. (the condo comes with a catch--trust me).
- I, Leah, have a connective tissue disorder called Ehlers-Danlos Syndrome (AKA EDS; Note: for more information see the post from 12 March 2009). I've decided that i want to do something about it. I just have to figure out what--i suppose talking about it is the first step.
- Related to my EDS, Pete and I are trying to have a baby. Yes, moms and dads, that's true. With EDS there can be plenty of hurdles to overcome, so this blog can be a testimony to my family, my friends, strangers, and to myself that even though this road might get rough. It'll all be ok.
- AND! we have a super-cute, super-smart puppy! :)
So there is a lot to look forward to.
18 September 2011
12 March 2009
Tonight on Grey's there was a sick band geek who said:
"Once people see you as sick, they don't see anything else."
I think that she has finally put into words how i've always felt. As i mentioned before i have a disease. It's called Ehlers-Danlos Syndrome (EDS). Simply put, my body doesn't produce collagen. I guess the details of it doesn't matter.
=====================
But what does that mean for me in my day to day?
Well, I'm in pain constantly. I don't do steps--my body can handle 3 or 4, but a flight of stairs make my legs ache. When there is 'severe' temperature/weather changes, my pain level increases. (thanks to living in VA--this happens often). Standing for a long period of time doesn't work for me either. I'm on high doses of pain meds just to cut the pain. Some days they work, others they don't. My ankles roll while i'm walking. My hips pop out frequently. and my knees dislocation often. Fortunately, everything typically goes back into place when it pops out. I typically compare a lot of what i deal with to arthritis and feeling like i'm 79 years old.
let's see, what else. I scar even with the smallest cut (i have this scar on my upper lip where i was hit with a matchbox car when i was two or so--i have another on the side of my right knee where a dogs claw scratched me at least 10 years ago). i have soft velvety skin. (ok, that's not really a bad thing). I'm super flexible which leads to a lot of "party tricks."
The bad part (wait, is this really the only bad part?) is that i love to dance. A night of dancing wreaks havoc on my body and walking is not my friend for the next (at least) 2 days... ...sometimes more.
The disease is hereditary. I inherited it from my mom and my sister was just diagnosed. My currently-non-existent-but-future children will have a 50/50 chance of having it as well.
The great part about this is that I have a type of the disease that really just affects my daily life as i previously mentioned, but it will get worse as i get older, as opposed to the type that affects your life span.
The bad part is that, while they'll deal with things that i've dealt with, they could have symptoms way worse than mine. Or they could luck out--like my mom--and have very few symptoms.
So while i fortunately 'control' the type of the disease that i have, i can not control the severity of it.
(maybe i'll talk more about my EDS on here).
=====================
Back to what was said on Grey's--
Once i was diagnosed, I kept my disease quiet. I didnt want to be known as that girl. Because she was right, "once people see you as sick, they don't see anything else."
And i truly felt that way for a really long time. It was like if i let people know, i'd become 'weak' or 'disabled'. and i just wanted to be known as being me. not my disease. So i kept it hidden for a long time and quietly deal with the pain.
Then i met Anna--my scottish friend--via facebook. She also has my disease. She unfortunately has more severe symptoms and is now facing Crohn's disease as well.
She's taught me, mainly just by example, that hiding what i deal with doesn't help anyone. First, EDS goes significantly undiagnosed--so talking about it raises awareness. Second, talking about it, makes my friends aware to help me when i might need it and don't want to ask. And, third, not talking about it doesn't make it go away.
For so long i lived by the words that the band geek spoke that i could have used a friend.
Now, I'm not afraid to tell my friends about it. I feel that it might make them uncomfortable sometimes, and i don't want them to be afraid to ask me any questions about it. But it's also helped out in that they know i'm not supposed to lift much weight, so they keep me accountable and make me put down the heavy object or to grab the elevator instead of trekking up the stairs like i would do.
(i'm stubborn, independent, and hard-headed, so i'm constantly pushing myself to the limit and past it)
....but now that my friends know, they help me. They stop me. And they don't make me feel 'different' because i need the help and i can't do it on my own.
and i love them for that.
=====================
Moral of the story:
Even if you don't want to shout your differences from the rooftop (or your soapbox), don't hide it from your friends. Friends are there to support you just like you are there to support them when they need the help.
And if they can't handle the truth about you, then they suck at life anyway and you can find better friends. :)
"Once people see you as sick, they don't see anything else."
I think that she has finally put into words how i've always felt. As i mentioned before i have a disease. It's called Ehlers-Danlos Syndrome (EDS). Simply put, my body doesn't produce collagen. I guess the details of it doesn't matter.
=====================
But what does that mean for me in my day to day?
Well, I'm in pain constantly. I don't do steps--my body can handle 3 or 4, but a flight of stairs make my legs ache. When there is 'severe' temperature/weather changes, my pain level increases. (thanks to living in VA--this happens often). Standing for a long period of time doesn't work for me either. I'm on high doses of pain meds just to cut the pain. Some days they work, others they don't. My ankles roll while i'm walking. My hips pop out frequently. and my knees dislocation often. Fortunately, everything typically goes back into place when it pops out. I typically compare a lot of what i deal with to arthritis and feeling like i'm 79 years old.
let's see, what else. I scar even with the smallest cut (i have this scar on my upper lip where i was hit with a matchbox car when i was two or so--i have another on the side of my right knee where a dogs claw scratched me at least 10 years ago). i have soft velvety skin. (ok, that's not really a bad thing). I'm super flexible which leads to a lot of "party tricks."
The bad part (wait, is this really the only bad part?) is that i love to dance. A night of dancing wreaks havoc on my body and walking is not my friend for the next (at least) 2 days... ...sometimes more.
The disease is hereditary. I inherited it from my mom and my sister was just diagnosed. My currently-non-existent-but-future children will have a 50/50 chance of having it as well.
The great part about this is that I have a type of the disease that really just affects my daily life as i previously mentioned, but it will get worse as i get older, as opposed to the type that affects your life span.
The bad part is that, while they'll deal with things that i've dealt with, they could have symptoms way worse than mine. Or they could luck out--like my mom--and have very few symptoms.
So while i fortunately 'control' the type of the disease that i have, i can not control the severity of it.
(maybe i'll talk more about my EDS on here).
=====================
Back to what was said on Grey's--
Once i was diagnosed, I kept my disease quiet. I didnt want to be known as that girl. Because she was right, "once people see you as sick, they don't see anything else."
And i truly felt that way for a really long time. It was like if i let people know, i'd become 'weak' or 'disabled'. and i just wanted to be known as being me. not my disease. So i kept it hidden for a long time and quietly deal with the pain.
Then i met Anna--my scottish friend--via facebook. She also has my disease. She unfortunately has more severe symptoms and is now facing Crohn's disease as well.
She's taught me, mainly just by example, that hiding what i deal with doesn't help anyone. First, EDS goes significantly undiagnosed--so talking about it raises awareness. Second, talking about it, makes my friends aware to help me when i might need it and don't want to ask. And, third, not talking about it doesn't make it go away.
For so long i lived by the words that the band geek spoke that i could have used a friend.
Now, I'm not afraid to tell my friends about it. I feel that it might make them uncomfortable sometimes, and i don't want them to be afraid to ask me any questions about it. But it's also helped out in that they know i'm not supposed to lift much weight, so they keep me accountable and make me put down the heavy object or to grab the elevator instead of trekking up the stairs like i would do.
(i'm stubborn, independent, and hard-headed, so i'm constantly pushing myself to the limit and past it)
....but now that my friends know, they help me. They stop me. And they don't make me feel 'different' because i need the help and i can't do it on my own.
and i love them for that.
=====================
Moral of the story:
Even if you don't want to shout your differences from the rooftop (or your soapbox), don't hide it from your friends. Friends are there to support you just like you are there to support them when they need the help.
And if they can't handle the truth about you, then they suck at life anyway and you can find better friends. :)
07 December 2008
Matters of the brain Vs. those of the heart.
Amongst my friends, I'm a walking encyclopedia. I either know the answer, or i'll go look it up because i HAVE to know. My friend, Alice, called tonight to simply ask how many teaspoons are in one tablespoon. (three). But it made me think about how analytical i have always been in my quest to know all that i can.
It reminded me of a story that my mom told at our last sleepover. (oh. Alice, another friend-Emily, and I have been friends since we were 5. We've recently started having sleepovers again like we did when we were kids. I highly recommend it.)
So the story:
I was at that age where kids start to talk. And the first subject that starts this long road down the gossip trail is Santa Claus. I still believed. And the kids told me otherwise. So when i went home from school that day, i was bummed, crushed, heart broken. My mom asked what was wrong so i told her what the kids said. She, unfortunately, confirmed in the kindest way she could think of. So i sat there in my little kid body and thought for a minute while staring at the ground. I looked up and said, "but you can't be santa claus, you don't have enough money [to buy me all the toys]." The conversation continued and my mom told me how she had a pair of my grandpas boots to stamp in soot from the fireplace and make tracks to the tree.
Me: "Are you the tooth fairy?"
Mom: "yes, i am. I get your teeth while you are sleeping."
Me: "and the Easter Bunny?
Mom: "yes."
Me: "but you cant be the Leprechaun--your feet are too big!"
It was my mom and I growing up. Just us. So all holidays were special. For St. Patty's Day. She'd dip her fingers in green glitter and "walk" a little trail from the front door to a little basket of candy.
Apparently, I've always been an over-thinker. Or maybe it is over-achiever. Or, perhaps, I'm just curious.
Receiving the call from Alice made me think of the story about santa claus because a kid should not think about their parent's financial situation. What made me think of that at such a young age?
-------------
As i've grown, I'm constantly told that i'm indecisive. This phone call today has made me realize that i'm NOT indecisive. I am just an over thinker. I think too much about everything. My days are spent in my head playing out every scenario. Even down to what i'm going to have for lunch. I think about my options and then i think about how i'm going to feel after it. It sounds totally ridiculous.
It does, doesn't it?
But i'm glad that i've thought about this because i've always felt bad for not being able to make decisions.
[one decision i'm currently working on is where i want to take this blog and what is going to be my focus]
And vocalizing these thoughts and realizations. I've come to realize that there are--at least in my head--two types of decisions: matters of the heart and matters of the brain. Matters of the brain i will toss back and forth, run through every scenario, and play out every possibility until my brain can't take anymore.
Matters of the brain are: What's for dinner? What movie do you want to see? What should i wear today? ...you get the idea.
Matters of the heart on the other hand. I dint need minutes, hours or days to decide. Those i can decide in a moment.
With a matter of the heart, it doesn't matter what all the possibilities are. You know instantly what is the right decision. Because with matters of the heart it's not about how your decision affects everyone around you. It only affects you and that other person. ...i think that sums that up.
..now if only i could get this through some one's thick skull.
I hope this makes sense.
It reminded me of a story that my mom told at our last sleepover. (oh. Alice, another friend-Emily, and I have been friends since we were 5. We've recently started having sleepovers again like we did when we were kids. I highly recommend it.)
So the story:
I was at that age where kids start to talk. And the first subject that starts this long road down the gossip trail is Santa Claus. I still believed. And the kids told me otherwise. So when i went home from school that day, i was bummed, crushed, heart broken. My mom asked what was wrong so i told her what the kids said. She, unfortunately, confirmed in the kindest way she could think of. So i sat there in my little kid body and thought for a minute while staring at the ground. I looked up and said, "but you can't be santa claus, you don't have enough money [to buy me all the toys]." The conversation continued and my mom told me how she had a pair of my grandpas boots to stamp in soot from the fireplace and make tracks to the tree.
Me: "Are you the tooth fairy?"
Mom: "yes, i am. I get your teeth while you are sleeping."
Me: "and the Easter Bunny?
Mom: "yes."
Me: "but you cant be the Leprechaun--your feet are too big!"
It was my mom and I growing up. Just us. So all holidays were special. For St. Patty's Day. She'd dip her fingers in green glitter and "walk" a little trail from the front door to a little basket of candy.
Apparently, I've always been an over-thinker. Or maybe it is over-achiever. Or, perhaps, I'm just curious.
Receiving the call from Alice made me think of the story about santa claus because a kid should not think about their parent's financial situation. What made me think of that at such a young age?
-------------
As i've grown, I'm constantly told that i'm indecisive. This phone call today has made me realize that i'm NOT indecisive. I am just an over thinker. I think too much about everything. My days are spent in my head playing out every scenario. Even down to what i'm going to have for lunch. I think about my options and then i think about how i'm going to feel after it. It sounds totally ridiculous.
It does, doesn't it?
But i'm glad that i've thought about this because i've always felt bad for not being able to make decisions.
[one decision i'm currently working on is where i want to take this blog and what is going to be my focus]
And vocalizing these thoughts and realizations. I've come to realize that there are--at least in my head--two types of decisions: matters of the heart and matters of the brain. Matters of the brain i will toss back and forth, run through every scenario, and play out every possibility until my brain can't take anymore.
Matters of the brain are: What's for dinner? What movie do you want to see? What should i wear today? ...you get the idea.
Matters of the heart on the other hand. I dint need minutes, hours or days to decide. Those i can decide in a moment.
With a matter of the heart, it doesn't matter what all the possibilities are. You know instantly what is the right decision. Because with matters of the heart it's not about how your decision affects everyone around you. It only affects you and that other person. ...i think that sums that up.
..now if only i could get this through some one's thick skull.
I hope this makes sense.
Subscribe to:
Comments (Atom)