Basically, these are all topics I'd planned on writing a blog each on, but realized I just didn't have the energy.
So I lazily cobbled this together!
(I really know how to SELL it, right?)
ANYway....
Struggling with depression in a big way.
The fatigue is even worse.
(I feel like my CFS is getting worse.
Hoping it's just pregnancy...)
Which is forms an ever-so-helpful film of uselessness that clings to my heart and mind these days, suffocating me.
Yay!
Depression and Chronic Fatigue are assholes.
Moving on...
Still radio silence on the employment front.
Applying/circulating to just about anything/anyone is still the name of the game.
Yet, we're having to weigh gas prices to pay to unemployment benefits, etc.
We've realized that over the last 5 years, we've fallen into the "desperation trap" taking crap jobs just for the sake of a job, rather than looking at the career-term picture...
Which has barely done anything to *really* help us.
Not that we're really in a position to be choosy at this point--
But we would like to break the cycle if we can.
Huz is taking some online classes in hopes of beefing up his skill-set from a resume perspective, but it's definitely not a quick-fix and there doesn't seem to be any opportunities forthcoming...
We're just holding on and hoping.
The childrens:
O is driving his mama and daddy to a sleep-deprived grave.
He's completely given up his nap, which he frankly did back in December when we put him in his big-boy bed, but I was in denial...
So yeah. No nap.
And?
He wakes up at 5:00-30 am no matter what.
We've tried early bed time, late bed time, sound machines, blackout shades, death threats (kidding!), everything.
Does not MATTAH.
7:30-8pm to 5:00-30am
Always.
With no nap.
My runs-his-ass-off-gets-CRANKY-when-sleepy Child.
We've considered dosing him, but figured that would just be a slippery slope...
We're working on consequences and following directions.
I think he's even more stubborn than me.
Ahem.
Baby P is moving and grooving in the womb, and making her mama very fat...okay, so it could be all the emotional eating...
In my defense?
Girlfriend kicks me 'til I eat.
No joke...
Hush.
All in all though, she'd healthy and working her way toward the finish line.
We have a 3D US scheduled for May 23rd which I'm excited about.
Can't wait to see her little faaaace!
My joints are killing me, and I've taken up residence in a recliner for the sleepings since late March, which sucks, but laying in bed is too painful.
The recliner is miiiiles better than the poang chair of O's gestation.
::shudder::
Mobility is rabidly escaping me.
Sigh.
But!
She's worth it, as was O.
Not sure it takes the sting off being able to feel stretch marks through my shirt though...
Ain't mudderhood grand?
To sum up:
Life, in a lot of ways, is a demoralizing mess, but it's got potential...
A good friend asked me the other day how life was, and I said:
"Well, we're broke and depressed, living at my in-laws with tiny people, but we still want to be married to each other, so that's gotta be good--right?"
And it is.
Showing posts with label Life. Show all posts
Showing posts with label Life. Show all posts
Sunday, April 29, 2012
Friday, December 17, 2010
Cerebral Palsy: It's Not as Sexy as it Sounds
I have Cerebral Palsy. I know I've mentioned it in various posts (like this one, that one, or yep, that one), but I realized today over coffee with one of my close friends, as she was asking me about my experience with it, that I've never explained it in my blog...
[Take a second to read the info on the Mayo Clinic page, if you want. I like that site because it lays things out very clearly and concisely.]
If you're wondering which things apply to me, here's a short list:
The lack of explanation is partly because it's a difficult disorder to explain, affecting each of us that has it a bit differently, partly because I don't even fully understand it, and mostly because that is not how I want people to "see" me.
A brief history of Me and CP:
I was born about 3 months early.
I was 2 lbs. 6oz.
I needed surgery right away (and lived in a incubator for the first few months)...My heart and lungs were underdeveloped.
They told my mother that I wouldn't live through the night.
When I did, then they said I wouldn't last the week.
As I proved I was going to be around awhile, then it turned into:
She'll be mentally handicapped, she won't talk, she won't walk. and so on....
I talked very early. And from what I was saying, it was clear that I was very smart.
But I didn't walk. I didn't move very well at all.
When I was 2 and a half, they diagnosed me with Cerebral Palsy.
Along with that was more of what I wouldn't do...and leg-braces and walkers and wheelchairs and the mine-field that is the school-yard playground.
When I was 7 years old, a surgeon decided that I would be a candidate for this experimental surgery. It was risky, but it was free. It in my childhood mind, offered the possibility of being normal.
Yeah, it could backfire, and I could never walk again or DIE, but WHAT-EVER.
Sign me UP!
The recovery from surgery was hell. It was long and excruciating and exhausting. Add in the less-than picturesque environment that was my home life, and I wasn't sure I was going to make it.
It took about 2 -3 years to get to the place I now (more or less) find myself physically. I had to relearn to sit, crawl, walk, the whole shebang. but the first day I went to school without a walker or braces or orthopedic shoes was one of the best days of my life.
YET,
I spent most of my childhood as the "handicapped" girl. The "retarded" girl. The "girl who walks funny" girl.
And I was bitter. I still was in pain. I still had tremors and a limp (among other things).
I still was never going to be an Olympic gymnast/ballerina/high-heel wearing supermodel.
I was never going to climb a tree. Or ride a bike.
People looked at me with that "Ohhh, she's special" look of pity on their faces...
It pissed me off royally. You mean I went through all of that for NOTHING?
(Being told that I was worthless at home really wasn't helping either)
Fuck me.
But then I pulled my head out of my ass and realized that the only way I was going to have a life is if I got the hell outta dodge and ignored all the voices said:
NO You Can't.
So I fought it. Lied about it even....I didn't have Cerebral Palsy, I just had been in a car accident. People seemed to accept and deal with that easier than CP. I did my best to hide my symptoms, and always tried to act like I was fine. If I was hurting, I tried not to show it. If I needed help, I would have rather injured myself than ask for it*. I avoided situations where my condition would be glaringly apparent.
I refused to apply for a handicapped placard. To me, that was like pinning a big scarlet H to my blouse. Hell to the no.**
I pushed myself and did things that I probably shouldn't have, but I was so desperate to just be like everyone else. To prove to myself that I wasn't trapped by my disability.
There are times that I did feel trapped. That I felt sorry for myself. I still do, occasionally.
But I know that I am so very lucky.
That it could have been so much worse.
Sure, I need help putting on socks and shoes, and it's hard for me to do certain things that most people take for granted, but at least I can feed myself. At least I can breathe on my own...there are those with CP that can't.
I do fear the future, what getting old will be like for me. For my husband and children. I worry that my son will miss out on things because of his mother's limitations, I worry that my husband will too, for that matter.
Sometimes, my fears overwhelm me, and I feel defeated. But I constantly remind myself that I so lucky...To have overcome so much. To have been able to live the life I wanted. To have amazing friends. To have a loving husband and beautiful son.
It took me a long time to accept that I had Cerebral Palsy, (and as such, there would be complications/limitations-I was gonna have to tackle life in a different fashion than I'd hoped) and a long time to not try and hide it.
I now am very upfront about who I am...as you may have noticed...ahem....perhaps...
I'm so happy that I finally let myself do that. It's made me a better person.
That being said...
The General Public can often be unkind to those who are disabled:
They often treat you like you're contagious, or that you somehow did this to yourself. Like you're not a whole person. They ask rude questions and make idiotic assumptions.
I had a guy who told me once: I really like you, but I could never date a cripple. I said: Well, I could never date an asshole, so no hard feelings.
My husband was once asked if he married me because he had a fetish for gimps. TRUE STORY.
(It's a miracle that individual remained alive....)
I don't mind if people ask questions. If they want to know more about my condition-what it is, what causes it, etc., but a little tip? Don't lead into your queries with:
"What's wrong with you?" Or, "So, are you like, retarded?"
It will not end well. When asking questions, be respectful. Or I will make you sorry.
(In all seriousness, if you have any questions, feel free to ask! I'll do my best to answer them!)
*If I'm being honest, I fall into that pattern of behavior still now and then because I don't want to be a burden, or be seen as weak. It's something I continually work on.
**I want to be very clear about something:
I have an enormous respect for the Disabled community. I was wrong to be ashamed of my disability. I was wrong to hide it/lie about it. No one should ever be ashamed of something like that. I was frustrated and afraid. I was made to feel like a burden by the people who were supposed to be caring for me. I just wanted to be treated like a person, and as a child/teenager, denying my CP was the only way I thought I could be. I would never want a young person with any sort of disability to read this blog and think that they should do that too. Be proud of who you are. Don't hide and don't lie. Be honest with the world and yourself. That's a more fulfilling life that faking it could ever get you.
[Take a second to read the info on the Mayo Clinic page, if you want. I like that site because it lays things out very clearly and concisely.]
If you're wondering which things apply to me, here's a short list:
- Variations in muscle tone-stiffness/weakness
- Stiff muscles and exaggerated reflexes (spasticity)
- Lack of muscle coordination (ataxia)
- Tremors or involuntary movements
- Slow, writhing movements (athetosis)
- Delays in reaching motor skills milestones (as an infant) , such as pushing up on arms, sitting up alone or crawling
- Favoring one side of the body, such as reaching with only one hand or dragging a leg while crawling-My right side is my weak side and my arm will hang and/or my leg will drag, especially when I'm tired or in pain.
- Difficulty walking, such as walking on toes, a crouched gait, a scissors-like gait with knees crossing or a wide gait-Before my surgery, I was on my toes and crouched...nearly impossible to walk that way.
- Difficulty with precise motions, such as picking up a crayon or spoon-Or holding a pencil, handling scissors, typing, buttoning/zipping/snapping etc. As a kid I went thru a lot of PT to learn how to do those things, and I still get frustrated while doing it from time-to-time...particularly when you add a squirming toddler to the equation.
The lack of explanation is partly because it's a difficult disorder to explain, affecting each of us that has it a bit differently, partly because I don't even fully understand it, and mostly because that is not how I want people to "see" me.
A brief history of Me and CP:
I was born about 3 months early.
I was 2 lbs. 6oz.
I needed surgery right away (and lived in a incubator for the first few months)...My heart and lungs were underdeveloped.
They told my mother that I wouldn't live through the night.
When I did, then they said I wouldn't last the week.
As I proved I was going to be around awhile, then it turned into:
She'll be mentally handicapped, she won't talk, she won't walk. and so on....
I talked very early. And from what I was saying, it was clear that I was very smart.
But I didn't walk. I didn't move very well at all.
When I was 2 and a half, they diagnosed me with Cerebral Palsy.
Along with that was more of what I wouldn't do...and leg-braces and walkers and wheelchairs and the mine-field that is the school-yard playground.
When I was 7 years old, a surgeon decided that I would be a candidate for this experimental surgery. It was risky, but it was free. It in my childhood mind, offered the possibility of being normal.
Yeah, it could backfire, and I could never walk again or DIE, but WHAT-EVER.
Sign me UP!
The recovery from surgery was hell. It was long and excruciating and exhausting. Add in the less-than picturesque environment that was my home life, and I wasn't sure I was going to make it.
It took about 2 -3 years to get to the place I now (more or less) find myself physically. I had to relearn to sit, crawl, walk, the whole shebang. but the first day I went to school without a walker or braces or orthopedic shoes was one of the best days of my life.
YET,
I spent most of my childhood as the "handicapped" girl. The "retarded" girl. The "girl who walks funny" girl.
And I was bitter. I still was in pain. I still had tremors and a limp (among other things).
I still was never going to be an Olympic gymnast/ballerina/high-heel wearing supermodel.
I was never going to climb a tree. Or ride a bike.
People looked at me with that "Ohhh, she's special" look of pity on their faces...
It pissed me off royally. You mean I went through all of that for NOTHING?
(Being told that I was worthless at home really wasn't helping either)
Fuck me.
But then I pulled my head out of my ass and realized that the only way I was going to have a life is if I got the hell outta dodge and ignored all the voices said:
NO You Can't.
So I fought it. Lied about it even....I didn't have Cerebral Palsy, I just had been in a car accident. People seemed to accept and deal with that easier than CP. I did my best to hide my symptoms, and always tried to act like I was fine. If I was hurting, I tried not to show it. If I needed help, I would have rather injured myself than ask for it*. I avoided situations where my condition would be glaringly apparent.
I refused to apply for a handicapped placard. To me, that was like pinning a big scarlet H to my blouse. Hell to the no.**
I pushed myself and did things that I probably shouldn't have, but I was so desperate to just be like everyone else. To prove to myself that I wasn't trapped by my disability.
There are times that I did feel trapped. That I felt sorry for myself. I still do, occasionally.
But I know that I am so very lucky.
That it could have been so much worse.
Sure, I need help putting on socks and shoes, and it's hard for me to do certain things that most people take for granted, but at least I can feed myself. At least I can breathe on my own...there are those with CP that can't.
I do fear the future, what getting old will be like for me. For my husband and children. I worry that my son will miss out on things because of his mother's limitations, I worry that my husband will too, for that matter.
Sometimes, my fears overwhelm me, and I feel defeated. But I constantly remind myself that I so lucky...To have overcome so much. To have been able to live the life I wanted. To have amazing friends. To have a loving husband and beautiful son.
It took me a long time to accept that I had Cerebral Palsy, (and as such, there would be complications/limitations-I was gonna have to tackle life in a different fashion than I'd hoped) and a long time to not try and hide it.
I now am very upfront about who I am...as you may have noticed...ahem....perhaps...
I'm so happy that I finally let myself do that. It's made me a better person.
That being said...
The General Public can often be unkind to those who are disabled:
They often treat you like you're contagious, or that you somehow did this to yourself. Like you're not a whole person. They ask rude questions and make idiotic assumptions.
I had a guy who told me once: I really like you, but I could never date a cripple. I said: Well, I could never date an asshole, so no hard feelings.
My husband was once asked if he married me because he had a fetish for gimps. TRUE STORY.
(It's a miracle that individual remained alive....)
I don't mind if people ask questions. If they want to know more about my condition-what it is, what causes it, etc., but a little tip? Don't lead into your queries with:
"What's wrong with you?" Or, "So, are you like, retarded?"
It will not end well. When asking questions, be respectful. Or I will make you sorry.
(In all seriousness, if you have any questions, feel free to ask! I'll do my best to answer them!)
*If I'm being honest, I fall into that pattern of behavior still now and then because I don't want to be a burden, or be seen as weak. It's something I continually work on.
**I want to be very clear about something:
I have an enormous respect for the Disabled community. I was wrong to be ashamed of my disability. I was wrong to hide it/lie about it. No one should ever be ashamed of something like that. I was frustrated and afraid. I was made to feel like a burden by the people who were supposed to be caring for me. I just wanted to be treated like a person, and as a child/teenager, denying my CP was the only way I thought I could be. I would never want a young person with any sort of disability to read this blog and think that they should do that too. Be proud of who you are. Don't hide and don't lie. Be honest with the world and yourself. That's a more fulfilling life that faking it could ever get you.
Tuesday, July 6, 2010
Let's just call this Free Association, shall we?
Things on my mind: AKA things I-stress-about-and-drive-myself-nuts-with
Owen is 8 months and crawling. WOAH.
We still live with my in-laws. This August will be TWO years. WHAT?
We need health insurance, Like last year. Pre-existing conditions make that impossible/muy Arm and a Leggy. SUCK.
Chronic fatigue blows. You look fine, so people want you to BE fine, but you're not. REALLY.
Cerebral Palsy blows. I'm am SUPER lucky that (thru PT and massive surgery as a child)for the most part, I look fine/live normally but as previously stated, I'm not. SWEAR.
I will never drive a car. Yes, I probably could finagle my way into a Driver's License and behind the wheel, but it's not safe, so I ain't gonna, no matter how much protestation arises. EVER.
I think I'm going a little gray. I am devastated. PATHETIC.
My husband is an amazing man, and it breaks my heart to see him feel so defeated all the time. SIGH.
I'm growing super weary of always feeling "a day late and a dollar short," but I'm sooo grateful that at least it's only a dollar now. PROGRESS.
Should I feel guiltier for not going back to work? Given our financial sitch, I know people think I'm being a choosy beggar (and who likes those?), but I would be working just to pay for childcare, and I cannot fathom working just to leave O with strangers, just to come home and be too exhausted to spend any time with him. BOOO.
I want my libido to come back. I think my husband feels neglected. He used to feel a bit "overworked". TMI?
I worry that O will feel like he's missing out b/c his mommy is disabled. SOB.
Sallie Mae is well on its way to owning me for the rest of my life, for a degree I have never (in the professional sense) used. FAIL.
That degree is technically how I met my husband. An $80,000 husband. WIN? (yes.)
My new mantra (in efforts to be more positive) is: Be Positive, Be Patient, yet Be (realistically)Proactive. We'll see how it goes. SLOWLY.
Want to be a great wife, a great mother, and a great friend while still maintaining time for myself which makes me feel selfish, but hello? I know intellectually it's not, so I'm striving for that balance. POSSIBLE?
Should I be teaching O more? WE read and sing together, we listen to classical and classic punk? We talk to him and snuggle him all the time, but is that enough? Should he already be learning to read and know sign language and speak Latin, and have mastered the art of French cuisine? Have I doomed him to a life of mediocrity because he watches Sesame Street so I can fold laundry? NEUROSIS.
I could really go for some Yogurtland and a pedicure right about now. DREAMING.
Instead i have to go pick up and kiss my baby who just woke up from his nap. AWESOME!
Owen is 8 months and crawling. WOAH.
We still live with my in-laws. This August will be TWO years. WHAT?
We need health insurance, Like last year. Pre-existing conditions make that impossible/muy Arm and a Leggy. SUCK.
Chronic fatigue blows. You look fine, so people want you to BE fine, but you're not. REALLY.
Cerebral Palsy blows. I'm am SUPER lucky that (thru PT and massive surgery as a child)for the most part, I look fine/live normally but as previously stated, I'm not. SWEAR.
I will never drive a car. Yes, I probably could finagle my way into a Driver's License and behind the wheel, but it's not safe, so I ain't gonna, no matter how much protestation arises. EVER.
I think I'm going a little gray. I am devastated. PATHETIC.
My husband is an amazing man, and it breaks my heart to see him feel so defeated all the time. SIGH.
I'm growing super weary of always feeling "a day late and a dollar short," but I'm sooo grateful that at least it's only a dollar now. PROGRESS.
Should I feel guiltier for not going back to work? Given our financial sitch, I know people think I'm being a choosy beggar (and who likes those?), but I would be working just to pay for childcare, and I cannot fathom working just to leave O with strangers, just to come home and be too exhausted to spend any time with him. BOOO.
I want my libido to come back. I think my husband feels neglected. He used to feel a bit "overworked". TMI?
I worry that O will feel like he's missing out b/c his mommy is disabled. SOB.
Sallie Mae is well on its way to owning me for the rest of my life, for a degree I have never (in the professional sense) used. FAIL.
That degree is technically how I met my husband. An $80,000 husband. WIN? (yes.)
My new mantra (in efforts to be more positive) is: Be Positive, Be Patient, yet Be (realistically)Proactive. We'll see how it goes. SLOWLY.
Want to be a great wife, a great mother, and a great friend while still maintaining time for myself which makes me feel selfish, but hello? I know intellectually it's not, so I'm striving for that balance. POSSIBLE?
Should I be teaching O more? WE read and sing together, we listen to classical and classic punk? We talk to him and snuggle him all the time, but is that enough? Should he already be learning to read and know sign language and speak Latin, and have mastered the art of French cuisine? Have I doomed him to a life of mediocrity because he watches Sesame Street so I can fold laundry? NEUROSIS.
I could really go for some Yogurtland and a pedicure right about now. DREAMING.
Instead i have to go pick up and kiss my baby who just woke up from his nap. AWESOME!
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