Sometimes even the things you want more than anything are scary.
Petitions.
Filing.
Dissolution.
Cutting apart what you thought held you together for a long time.
But it didn't. It didn't hold you together. You are the glue that holds you together. It's always nice to have someone to lean on. It's always nice to have that support, but you are the one who gets out of bed every day and puts one foot in front of the other.
No one else can do that for you.
And the future is so bright. Anything is possible. Absolutely anything.
Showing posts with label support. Show all posts
Showing posts with label support. Show all posts
Tuesday, July 24, 2012
Thursday, July 5, 2012
Independence
Yesterday was the 4th of July.
That is a day to celebrate independence.
Yesterday felt weird. It was the first day in what I am sure will be a string of building new traditions. Which, although liberating, is strange. And the 4th was always a big deal. The biggest deal of all of the holidays. And I have a confession.
I HATE the 4th of July.
I think the parade is boring and the fireworks stink.
There, that is MY declaration of independence.
But yesterday was ok. Too hot to really do anything so it was quiet and involved a nice long nap and sadly a terrible headache. The first really terrible headache. Which I have been nervous about. I should have known better. I was tucked on the couch and told not to move. I was kissed on the forehead and asked if anything could be done. I was told that being taken care of was his most important job. : ) I nearly cried.
And I got to thinking. About IIH and the role it played in the demise. I started to picture myself reading this blog and panicking as I wondered if that would be me and MY marriage and so I have decided to delve into it just a little bit. Just enough to let potential caregivers of someone with IIH know what it is like and what I want when I feel like crap.
IIH is frustrating for everyone. When you love someone and they are in pain your first response is to fix. Pills, ice, band-aids; anything to make it better. That is impossible with IIH. The thing you have to remember is that you can't feel their pain. And therefore you can't judge it. That was one of the mistakes that was made. It was by far not the worst mistake or the only mistake. It was not the one that sealed the deal or made up minds. It was something in a long lists of mistakes. It was by far not the deal breaker, but it did break me just a little bit more.
To have your life change and then to be made to feel over dramatic and useless when dealing with that change.
So my advise to all caregivers. Just be there. When pain hits just be there. I don't know how your sufferer reacts but I do know what I do, I hide. I slink off into another room and try and pretend that everything is ok. I rub my head and sigh until someone walks into the room and then I straighten like a kid who's hand was caught in the cookie jar.
Catch them. Sit them down. Kiss their forehead. Tell them to stop. Ask them what they need. Give it to them. Listen. Believe. Love. And if they need to pretend that they are fine and keep slogging through, let them. But be ready for the fall.
Just be perfect, like Prom Date. Maybe I will have him teach a class.
That is a day to celebrate independence.
Yesterday felt weird. It was the first day in what I am sure will be a string of building new traditions. Which, although liberating, is strange. And the 4th was always a big deal. The biggest deal of all of the holidays. And I have a confession.
I HATE the 4th of July.
I think the parade is boring and the fireworks stink.
There, that is MY declaration of independence.
But yesterday was ok. Too hot to really do anything so it was quiet and involved a nice long nap and sadly a terrible headache. The first really terrible headache. Which I have been nervous about. I should have known better. I was tucked on the couch and told not to move. I was kissed on the forehead and asked if anything could be done. I was told that being taken care of was his most important job. : ) I nearly cried.
And I got to thinking. About IIH and the role it played in the demise. I started to picture myself reading this blog and panicking as I wondered if that would be me and MY marriage and so I have decided to delve into it just a little bit. Just enough to let potential caregivers of someone with IIH know what it is like and what I want when I feel like crap.
IIH is frustrating for everyone. When you love someone and they are in pain your first response is to fix. Pills, ice, band-aids; anything to make it better. That is impossible with IIH. The thing you have to remember is that you can't feel their pain. And therefore you can't judge it. That was one of the mistakes that was made. It was by far not the worst mistake or the only mistake. It was not the one that sealed the deal or made up minds. It was something in a long lists of mistakes. It was by far not the deal breaker, but it did break me just a little bit more.
To have your life change and then to be made to feel over dramatic and useless when dealing with that change.
So my advise to all caregivers. Just be there. When pain hits just be there. I don't know how your sufferer reacts but I do know what I do, I hide. I slink off into another room and try and pretend that everything is ok. I rub my head and sigh until someone walks into the room and then I straighten like a kid who's hand was caught in the cookie jar.
Catch them. Sit them down. Kiss their forehead. Tell them to stop. Ask them what they need. Give it to them. Listen. Believe. Love. And if they need to pretend that they are fine and keep slogging through, let them. But be ready for the fall.
Just be perfect, like Prom Date. Maybe I will have him teach a class.
Sunday, May 13, 2012
Change
A week ago today I moved out of my house.
I am not going to air my relationship dirty laundry here, but I am not going back.
Since leaving I have not had a headache.
I have people to thank. Prom Date, TJizzle, Mom, Step-Dad, Mrs. Rocketship, the Doosh. <3
Happy Mother's Day.
I am not going to air my relationship dirty laundry here, but I am not going back.
Since leaving I have not had a headache.
I have people to thank. Prom Date, TJizzle, Mom, Step-Dad, Mrs. Rocketship, the Doosh. <3
Happy Mother's Day.
Saturday, May 5, 2012
Growing up
I don't buy any of that new age crap. I typically don't go in for inspirational sayings. I think when shit gets tough either you suck it up and change something about it or you stop complaining.
I have always picked my friends with pretty much one things in mind, do we laugh? If the answer is yes then for sure we can be friends. If the answer is no then we prolly aren't going to get along. I know, I'm not very picky. I can take a lot of shit. I can be pretty much whatever you need me to be, as long as you make me laugh.
But something about that has changed. I don't know if it's the diagnosis or simply a result of getting older, but I have found myself craving relationships that are far more real than that. Friends that will not only talk but listen. Friends who will offer advice and assistance when needed and sometimes just listen to me bitch about what happened that day.
It's required changes on my part. I have had to learn to trust people. I have had to tell people what is really going on and not just the rosy picture that I like to paint in my head. And in return I want friends who will do the same with me. Friends who will trust me with things they keep a secret from other people.
And I feel better. About my life and the scary unknown. I feel like I can face it because it's not just me and Hubs against the world. There are others who will hold my hand and help keep me going.
And there are still those people who I just laugh with. Because they are fine too. There is nothing wrong with that. But I am no longer scared that the people who have stuck around are going to run because I share something real with them because if that happens it is their problem not mine.
: )
I have always picked my friends with pretty much one things in mind, do we laugh? If the answer is yes then for sure we can be friends. If the answer is no then we prolly aren't going to get along. I know, I'm not very picky. I can take a lot of shit. I can be pretty much whatever you need me to be, as long as you make me laugh.
But something about that has changed. I don't know if it's the diagnosis or simply a result of getting older, but I have found myself craving relationships that are far more real than that. Friends that will not only talk but listen. Friends who will offer advice and assistance when needed and sometimes just listen to me bitch about what happened that day.
It's required changes on my part. I have had to learn to trust people. I have had to tell people what is really going on and not just the rosy picture that I like to paint in my head. And in return I want friends who will do the same with me. Friends who will trust me with things they keep a secret from other people.
And I feel better. About my life and the scary unknown. I feel like I can face it because it's not just me and Hubs against the world. There are others who will hold my hand and help keep me going.
And there are still those people who I just laugh with. Because they are fine too. There is nothing wrong with that. But I am no longer scared that the people who have stuck around are going to run because I share something real with them because if that happens it is their problem not mine.
: )
Saturday, April 28, 2012
I'm so Neeeeeeervous
I have suffered from anxiety for as long as I can remember.
It was pretty obvious.
Still I didn't seek help for it until last year. I woke up from a kidney stone procedure and due to some drugs was calm. My heart wasn't racing. My mind was quiet. I looked at Hubs and said, "is this what it's like for you?" When he said yes I knew it was time to talk to my PCP. The doctor prescribed Lexapro for me and it worked wonders. I was able to face things head on again. I didn't have to look at things from the corner of my eye. My brain no longer invented things to worry about. It was glorious.
Then I was diagnosed with IIH.
Things got worse again on the anxiety front. I chalked it up to the extra stress and went on my way assuming that things would be better when I started to get used to this diagnosis. It has been getting worse. Not all of the time. It will hit me out of left field and suddenly I will be freaking out about something. It is unpleasant and causes me to do and say things that are completely out of character. Even as I am doing and saying them I am embarrassed and ashamed because this is not like me. But it is like it is out of my control.
Tonight was especially bad.
So I googled it. And the results were astonishing. On the message boards it seems like everyone is talking about how they feel the exact same way. There are numerous studies with IIH patients presenting with psychiatric complaints. They surmise that it might be an effect of the increased pressure on our brains.
And now I just want to cry because not only am I not alone but I don't think I am crazy.
And again I am left wondering, how long has this been going on? How long has my pressure been high? How long has this been screwing with my brain? And they say that IIH probably doesn't cause these symptom simply makes them present more strongly. But maybe I would have been functional without meds if I didn't have IIH.
And does any of this really matter? Or does it just give me another reason to be angry? Another reason to hate this condition and the lack of research and the lack of attention and the lack of support and the lack of everything. I don't know.
It was pretty obvious.
Still I didn't seek help for it until last year. I woke up from a kidney stone procedure and due to some drugs was calm. My heart wasn't racing. My mind was quiet. I looked at Hubs and said, "is this what it's like for you?" When he said yes I knew it was time to talk to my PCP. The doctor prescribed Lexapro for me and it worked wonders. I was able to face things head on again. I didn't have to look at things from the corner of my eye. My brain no longer invented things to worry about. It was glorious.
Then I was diagnosed with IIH.
Things got worse again on the anxiety front. I chalked it up to the extra stress and went on my way assuming that things would be better when I started to get used to this diagnosis. It has been getting worse. Not all of the time. It will hit me out of left field and suddenly I will be freaking out about something. It is unpleasant and causes me to do and say things that are completely out of character. Even as I am doing and saying them I am embarrassed and ashamed because this is not like me. But it is like it is out of my control.
Tonight was especially bad.
So I googled it. And the results were astonishing. On the message boards it seems like everyone is talking about how they feel the exact same way. There are numerous studies with IIH patients presenting with psychiatric complaints. They surmise that it might be an effect of the increased pressure on our brains.
And now I just want to cry because not only am I not alone but I don't think I am crazy.
And again I am left wondering, how long has this been going on? How long has my pressure been high? How long has this been screwing with my brain? And they say that IIH probably doesn't cause these symptom simply makes them present more strongly. But maybe I would have been functional without meds if I didn't have IIH.
And does any of this really matter? Or does it just give me another reason to be angry? Another reason to hate this condition and the lack of research and the lack of attention and the lack of support and the lack of everything. I don't know.
Friday, April 20, 2012
I have no problems
I have 6 or 8 problems at the moment. Most of them are pain related.
I am considering driving off a bridge but Hubs has told me that I need to wait at least three days. He says at that point we can reevaluate. I am becoming convinced that he will never see things my way. If I became a quadriplegic then I couldn't feel pain right?
And that was an absolutely terrible thing to say.
Horrible.
Sometimes I think awful things. I think what many people fail to understand is the nature of this condition. They fail to realize that this is a never ending cycle. When I am in pain there is nothing I can do. I just have to push through it and continue on with my life because the other option, sitting at home moaning, isn't really feasible for me. So I plaster on a smile and take care of the kids and pretend like it doesn't feel like there is a burning steel rod shoved into my neck.
This weekend I have really nothing to do, which is nice. I can catch up on some training stuff I have put off for basically the whole school year and wallow in my misery. Completely healthy. The Doosh will be in town which will be uplifting I am sure. He will give me really motivating advice...
"Stop being a little bitch."
"Rub some dirt on it and walk it off."
"No one cares."
Thanks Doosh. I love you too.
I am considering driving off a bridge but Hubs has told me that I need to wait at least three days. He says at that point we can reevaluate. I am becoming convinced that he will never see things my way. If I became a quadriplegic then I couldn't feel pain right?
And that was an absolutely terrible thing to say.
Horrible.
Sometimes I think awful things. I think what many people fail to understand is the nature of this condition. They fail to realize that this is a never ending cycle. When I am in pain there is nothing I can do. I just have to push through it and continue on with my life because the other option, sitting at home moaning, isn't really feasible for me. So I plaster on a smile and take care of the kids and pretend like it doesn't feel like there is a burning steel rod shoved into my neck.
This weekend I have really nothing to do, which is nice. I can catch up on some training stuff I have put off for basically the whole school year and wallow in my misery. Completely healthy. The Doosh will be in town which will be uplifting I am sure. He will give me really motivating advice...
"Stop being a little bitch."
"Rub some dirt on it and walk it off."
"No one cares."
Thanks Doosh. I love you too.
Saturday, April 14, 2012
The Wait is Over
So the wait is over.
I was not offered the position.
And while I keep telling myself that is ok there is a part of me that is totally not ok with any of this.
I just don't understand how much bad news a girl can be expected to take before she flips the hell out. I found out the answer last night. Three major pieces of bad news in 4 and a half months. That is how much it takes before a girl flips the hell out.
I flipped out.
I never flip out.
Ok, that is a lie. I freak out all the time. But I freak out in private. Typically in my car. Typically because I am jealous of people who can relieve their pain with a pill. Typically because I miss my life before when I felt like a normal girl.
Last night was not in private.
And I try to put a happy face on it because no one likes a cry baby. I don't like a cry baby. I like to make fun of my problems because then they are not so big and scary. It's like imagining a spider wearing polka dot boxers and a clown wig. As soon as you can laugh at it it's not so scary anymore.
So yeah. I thought I was fine because I was laughing. And I am fineish. And I will be finer.
Good things in my life...
The puppies who are snoring next to me.
The husband who loves me
The mom who feeds me
The friends who take care of me
The doctors who are knowledgeable about me
The Stinker and all of the other kids who I already make a difference for every day
Maybe my mom was right. Maybe the universe is trying to tell me something. Maybe I am not done here. Who knows.
I was not offered the position.
And while I keep telling myself that is ok there is a part of me that is totally not ok with any of this.
I just don't understand how much bad news a girl can be expected to take before she flips the hell out. I found out the answer last night. Three major pieces of bad news in 4 and a half months. That is how much it takes before a girl flips the hell out.
I flipped out.
I never flip out.
Ok, that is a lie. I freak out all the time. But I freak out in private. Typically in my car. Typically because I am jealous of people who can relieve their pain with a pill. Typically because I miss my life before when I felt like a normal girl.
Last night was not in private.
And I try to put a happy face on it because no one likes a cry baby. I don't like a cry baby. I like to make fun of my problems because then they are not so big and scary. It's like imagining a spider wearing polka dot boxers and a clown wig. As soon as you can laugh at it it's not so scary anymore.
So yeah. I thought I was fine because I was laughing. And I am fineish. And I will be finer.
Good things in my life...
The puppies who are snoring next to me.
The husband who loves me
The mom who feeds me
The friends who take care of me
The doctors who are knowledgeable about me
The Stinker and all of the other kids who I already make a difference for every day
Maybe my mom was right. Maybe the universe is trying to tell me something. Maybe I am not done here. Who knows.
Saturday, April 7, 2012
Home.
I take a medicine for blood pressure.
My blood pressure has been waaaay lower since my IIH has been gotten under control somewhat and I am convinced that my elevated ICP had something to do with it. Surprise surprise, there have been no studies.
Even so, I plan on taking this blood pressure medicine until I die.
It lowers the heart rate as well, which calms me down. If I could take a medicine that kept my heart rate at like 30 I would. The day that must not be spoken of I got a stern reminder of what it was like before I started taking my anxiety medicine and my blood pressure medicine. It was not good. My heart was racing, there were butterflies in my stomach, there was a lack of focus on the world but a hyper focus on my problems, and there may have been a panic attack.
It was unpleasant.
Things are better.
I worry though (obviously). I worry about not being hired by TFA and then I worry about being hired by TFA. I have lived in this town my whole life. Everyone I see knows me. They know who I am and what I am about. If I say something outrageous they discount it because that is just how I am. If I do get hired by TFA I will have to start a whole new life and decide who I am.
And when I fall apart? There won't be anyone outside of my house to take me in and make me remember who I am and why I'm awesome.
Because I am awesome.
My blood pressure has been waaaay lower since my IIH has been gotten under control somewhat and I am convinced that my elevated ICP had something to do with it. Surprise surprise, there have been no studies.
Even so, I plan on taking this blood pressure medicine until I die.
It lowers the heart rate as well, which calms me down. If I could take a medicine that kept my heart rate at like 30 I would. The day that must not be spoken of I got a stern reminder of what it was like before I started taking my anxiety medicine and my blood pressure medicine. It was not good. My heart was racing, there were butterflies in my stomach, there was a lack of focus on the world but a hyper focus on my problems, and there may have been a panic attack.
It was unpleasant.
Things are better.
I worry though (obviously). I worry about not being hired by TFA and then I worry about being hired by TFA. I have lived in this town my whole life. Everyone I see knows me. They know who I am and what I am about. If I say something outrageous they discount it because that is just how I am. If I do get hired by TFA I will have to start a whole new life and decide who I am.
And when I fall apart? There won't be anyone outside of my house to take me in and make me remember who I am and why I'm awesome.
Because I am awesome.
Monday, March 5, 2012
Excitement
SO! Got a message on the bookface today from the NewsMan. He got an email from someone who read my article who's daughter has IIH. Terrible that she had IIH, but cool that the article did what it was supposed to do! This poor girl has been having a rough go of it lately and so I am going to call her tomorrow. Hopefully we will be able to get together and talk about how much this thing sucks.
I took a nighttime nap tonight. I am a failure.
Pretty awesome day for me on the IIH front. Nice sunny day which meant nice clear head. Exhaustion reared it's ugly head about 6 though. Sometimes it happens that way, I'll be fine fine fine fine fine and then all of a sudden I am falling asleep. I am still groggy, but that could have been the deep sleep.
I had a dream that I was asleep and someone knocked on the door. I had to let them in but by whole body was asleep so I was dragging myself to the door. It was incredibly frustrating because the person was rather upset with me.
Thursday, February 23, 2012
Karma
I used to believe in karma. I thought there was a balance to the world and that things happen for a reason.
I don't think I believe that anymore.
I have started reading blogs. Mostly medical blogs. Mostly blogs about people who are worse off than me so I can keep everything in perspective. First Wills pointed me to this blog. It is about a girl who is around my age and has Stage IV breast cancer. It is sad and happy all at the same time. Then there is this blog. It is called Jamsie Beats the Tumor. It is about a baby boy who gets a very aggressive and rare tumor. They start of with Day One, diagnosis and James dies on Day 24. It is heart wrenching.
I am thankful everyday that I do not have cancer. If I had a choice between cancer and IIH I would pick IIH most every time. I mean, if I had like a little mole that could be removed and they could promise it would never come back I would probably go for cancer. Still, cancer is terrible and horrible and I wouldn't wish it on my worst enemy.
I would kill for their support groups though.
Even if you have a rare kind of cancer there are commonalities that you can use to connect to other sufferers/survivors. It is also so familiar to people. If you tell someone you have cancer they kind of know what you're going through because it is slightly similar for everyone. Everyone knows of someone with cancer. Everyone knows the side effects of chemo. Everyone knows how much it sucks.
I am going to do that for IIH.
Everyone is going to know what IIH is. That is my goal.
Wear your pj's inside out for me. I want a snow day tomorrow.
I don't think I believe that anymore.
I have started reading blogs. Mostly medical blogs. Mostly blogs about people who are worse off than me so I can keep everything in perspective. First Wills pointed me to this blog. It is about a girl who is around my age and has Stage IV breast cancer. It is sad and happy all at the same time. Then there is this blog. It is called Jamsie Beats the Tumor. It is about a baby boy who gets a very aggressive and rare tumor. They start of with Day One, diagnosis and James dies on Day 24. It is heart wrenching.
I am thankful everyday that I do not have cancer. If I had a choice between cancer and IIH I would pick IIH most every time. I mean, if I had like a little mole that could be removed and they could promise it would never come back I would probably go for cancer. Still, cancer is terrible and horrible and I wouldn't wish it on my worst enemy.
I would kill for their support groups though.
Even if you have a rare kind of cancer there are commonalities that you can use to connect to other sufferers/survivors. It is also so familiar to people. If you tell someone you have cancer they kind of know what you're going through because it is slightly similar for everyone. Everyone knows of someone with cancer. Everyone knows the side effects of chemo. Everyone knows how much it sucks.
I am going to do that for IIH.
Everyone is going to know what IIH is. That is my goal.
Wear your pj's inside out for me. I want a snow day tomorrow.
Subscribe to:
Posts (Atom)